A continuation of this "Thinking..." series-part 4

So I last left off with Gonzo's adoption and finalization.  He settled in nicely, we got set up with all the specialist he needed to see.  The only two hiccups were that he was only a month away from his 3rd birthday when he came home, so there was no time to start early intervention, so he was without therapies until the beginning of July (for four months) while we waited for his special needs preschool placement to begin.  The other hiccup was dental (seems to be a pattern as he are having a mess of a time getting J's dental work done now).  But all in all, it was  a smooth transition, getting back to work was easy, we found a great summer sitter for after school for G, and were able to alternate our schedules easily.  I was even able to go to both a week long conference in Wisconsin in the Spring, and to work with colleagues in our fields in Illinois and Missouri in the summer, and  fields in North Carolina in the early Fall (I worked in plant genomics and agriculture research at the time)  Though I did miss out on the winter Puerto Rico trip due to changes that happened before winter. 

All in all, we adjusted well to being a family of three, and things were going very smoothly, and we knew that we wanted to add another child to our family within the following 18 months after Gonzo's adoption was Final in July.  As we learned it can take a long time to get an adoptive placement, we decided to update our home study that August, figuring that it would be at least the following Spring or Summer before we would be matched.  We focused solely on the US this time, both public and private, and focused again on special needs and were approved for one or two children so that we could potentially adopt a young sibling pair or two singles.  We really wanted to make sure there was at least 18 months in age between Gonzo and a sibling, so we really limited ourselves to looking for a child under the age of 2 1/2, which is very limiting in the US system unless you have a good nest egg for a private adoption.  We had used up our nest egg and the cushion of a second mortgage with the legal battle for Gonzo, and so we were limited to low cost placements with close travel.  We had begun to rebuild some savings specifically for adoption, but did not have a lot to go with.  But we figured we had plenty of time before there was even the possibility of having to travel to meet a child, and then a couple of months after being matched to continue to prepare for the child (as that is how G's adoption played out and most other adoptions from foster care that I had heard of played out). 

Even though Spence-Chapin's great special needs program was within our budget and travel range, we knew they require a year between placements, so there was no point in  inquiring on their site until at least February (one year after G came home).
( Special Note:  If you are a home-study ready family and interested in adopting an infant with special needs there is a beautiful baby boy who has been waiting at Spence-Chapin for nearly 6 months.  Please check out Theo.  If I was home-study ready, I would bend over backwards to add him to my family.  But alas, I am not in the position to do so. )

Now back to our regular blog post:  We renewed our home-study with Adoption Star's special needs infant program, and then just focused on the public listings both in and out of state, mainly through www.adoptUSkids.org the national photo-listing of kids waiting in foster care who are freed for adoption.  If anyone is interested, a few years ago I wrote a couple of articles on how to use the US system to find a match and how to improve your chances of being selected.  Those can be found here:
Tips for finding a Child
Proactive tips for a faster adoption match

So, we began sending our home-study and family profile out for children that felt would be a good match for us and we for them.  One of the children was a little guy in CT who looked a lot like G and had similar issues, but he kept flitting on and off the lists.  We came close on him, though he had family ties and decided that it was in his best interest to stay within an hour of his biological grandparents so that he could retain those ties, which is good for him.  On was a little girl in NJ who was older than G (she was 5 1/2 at the time), but by enough that we felt it would work, who had CP and a few other issues.  We actually got matched with her about a year later (after J came home), and found that upon review of her full disclosure that she was aggressive with children younger than her, and with G being only 3 and J being an infant with special needs, we decide that we were not ready to take on the risk.  She is still waiting even now, to our sorrow, but we made the decision we knew we had to for the family setting we had at that time.  If you think you may be a family match for her, please bring her home.  Here is a link to her public page: Natasha age 10

One was a little girl, infant,  in North Carolina's public system who had a number of issues which are just too long to list here, the primary one being hydroANencephaly (an issues we would become very familiar with a year later through a family member).  We inquired on her and began asking around of the adoption and special needs groups to get an idea of what it would be like to parent a child with her list of issues (hydrocephalus, potentially deaf, potentially blind, decreased hypothamic activity, etc...). As we were talking to a number of people and researching her condition to figure out if she would be a good match for our family, we received an email from a fellow adoptive parent who knew of a baby with similar issues available through a private agency in PA.  She sent us his recruiting flier and the information to contact the agency.

It was a Tuesday in October when we looked over his flier, and contacted the agency to express our interest in learning more.  We faxed our home-study and family profile, and they faxed us his medical information.  Being a private agency adoption he would not come with medical and special needs assistance the way that adopting from foster care provides.  However, that night we called the adoption specialist in our county (who also went to our church so we knew her outside of adoption as well).  She talked to us about the medicaid waiver program which we should be eligible for, to help with his medical care costs, and we should be eligible for SSDI as well for him, which would provide some extra funds to care for him.  So, our primary concern at that point (the financial impact of adopting an infant with extensive medical needs) was alleviated by finding out about these programs that would help until we could the applications and such done for his adoptive assistance.

Side Note: The adoption assistance programs are in place to help families that are willing to adopt children with special needs.  In the past (which still happens today more often that anyone likes), children with special needs were (are) put into institutional settings to manage their needs.  The cost to the state/country for each child in an institutional setting is well over $5000 a month in addition to their medical costs (that is staff, feeding, etc...).  Also, children do not have the stimulation of family and regular life, nor the advocacy ability of a loving family, in order to help them reach their full potential  and become contributing members of society as much as they are able (which kids like my boys have full potential with the right early support to become completely self supporting adults with college degrees, jobs, families of their own, etc... a chance the would be greatly diminished is raised in an institutionalized setting).  The cost of the children staying in foster care is less than $3000 a month plus medical (I can not remember where I got these estimates, I wrote it out when I got the info, but did not write the source down, I'll try to find it sometime).  For adoption assistance for kids with high needs, most states give around $400-600 a month plus medicaid to supplement your family insurance to cover the kids additional needs (thus reducing the amount the state spends on medical care per child as your family insurance is primary and the medicaid support only covers what they do not).   This gives people who have the heart and commitment to adopt kids who require more care and availability the financial boost to do so (as without it most people could not handle the additional costs of raising a child with special needs), while also saving the state and country more than ten times the funds per child for institutional care.  AND the best part is that it gives the children a chance to grow up in loving families and a much better chance of becoming contributing members of society with full, active lives of their own.  It is a win all around.

Now back to our post... So we decided that with the programs to help bridge us over until his adoption assistance would be accepted (or to use if he ended up not getting adoption assistance--it can be tricky with placements from a private agency), we decided on Wednesday that we would be happy to be his family. His needs were a bit daunting as he was a 28 week preemie who had already had heart surgery, had 2 massive brain bleeds, hydrocephalus, and a number of other issues.  But something about him just felt right, so we stepped out and accepted him. The call we got after that kind of knocked our socks off.  He was being released from the hospital on Monday and if we could please come down that weekend so we could do the training at the hospital for his care needs, then he could join our family directly. To learn more about his initial needs, please see this post from a couple of weeks ago which lists his pre-adoptive needs.  Luckily Philadelphia was in driving distance, and they waived all of the placement fees for his adoption, and we flew into a tizzy.  We both had to get time off from work (easier for me than for A as Cornell was an amazing place to work), scurried to get things together for an infant as we have not planned AT ALL on receiving a child that young.  So an infant car seat, a bassinet, and some infant clothes, blankets, infant bottles, etc, etc... (how often do you have only 2 days to prepare for newborn (he was 2/12 months old but was such an extreme preemie that by the end of October was at a newborn size 7 pounds 2 oz and development level) especially since everything has to be washed in infant detergent and all that BEFORE he comes home). 

So we got that all in place, and then left Friday morning (only 3 days after learning he existed).  We got to the hospital around noon, met with the agency social worker, then got to go to the NICU to meet him and talk with the doctors and nurses.  The agency social worker hung out with Gonzo while we were in the NICU itself as he was too young to be allowed in. We spent a lot of time talking with the doctors.  His potential could have been anything, there was even a very slim chance he would have no issues when he grew up.  But an extremely high chance (over 75%) that he would have severe spastic quad CP.  There was a good chance that he would never roll over, never speak, maybe even never hold his own head up.  There was a chance that he would be blind, and as he had failed 2 newborn hearing screenings, a chance that he was deaf. 

 I took G down for lunch with the social worker, and A stayed with the baby, we brought lunch back upstairs and we sat in the NICU waiting room and talked.  That afternoon, sat down with the social workers, and signed the adoptive placement papers (as I mentioned previously, you have to have 6 months at least after placement before the legal adoption is finalized).  So he was placed in our care. We went over to the hotel and had dinner together.  Then A and Gonzo stayed at the hotel while I went back for the pre-arranged overnight training stay, where the baby, by now called Josiah by us though his legal name was "baby boy" and I had a private room so that I could care for him with all his monitors and such and the NICU was just a couple of doors down and a quick phone call away.  It was a long night, and a lot to learn, but we managed it.  Monday he was released into our care, and once the ICPC was done (luckily it was very fast and had been started the week before when we had declared our intent to adopt (not so much paperwork as with a public agency)) and we headed home with our new, beautiful, and medically fragile baby boy.

That is how Josiah first joined our family (and the real trials of life and death, hope and futility, fear and faith, love and sorrow, and all those other balances...) began..

And our Little Gonzo was a Big Brother now.  One year after we met Gonzo, 9 months after he arrived home. 

Part 3...Thinking....

Sorry for the delay.  The last couple of days have been busy.  Lets see, where was I in the story...

Oh, we had heard back from some of the case workers about children we had inquired about.  One was a little boy in Texas who was just over 2 years old with a number of developmental issues.  We almost made it to the final three pool.  Many agencies and foster care systems select the three most likely families for a final in depth evaluation in order to choose the best family.  So making it to the final three is a really great step.  Around the same time, we were in the final running for a child through Spence-Chapin, an infant with FAS.  She was a beautiful little girl, and we were excited about the possibility of adopting her.  But we were not the family selected for her, which was about a month later.  Soon after that we were called about an infant boy through Adoption Star who had holoproloencephaly, but he would need to be picked up the week, and we did not have the funds available for the placement fee at that time, as the fees for his adoption were higher than we were prepared for (around $6000, about twice what we were prepared for).  With infant adoption, even special needs, even with reduced fees some adoptions are more costly for a variety of reasons. 

Soon after that the case worker from the Texas foster care system contacted us again.  She said that the chosen family had turned down the little boy after getting his full disclosure information packet, and  they were again selecting potential families and wanted to know if we were still interested in being considered for him.  We said yes of course, however a couple weeks later we learned we were not chosen again.  Around that time, we had heard about a baby boy in Louisiana whose issues I can not recall now.  We sent in our home study and had some conversations with the case worker, and she with our social worker.  We did end up in the final running for him, but were not the family chosen.  Hurricane Katrina hit about a week after that.  I remember praying that the chosen family had been able to get there, so that he was with his family during that stressful time. 

An Aside:  That is one of the problems with the adoption journey.  You invest a little piece of your heart in each child, even the ones you don't inquire on.  But you rarely, if ever, have a chance to learn what happened to them.  Some kids in the foster care system that I have watched for a long time are still there, their pictures and descriptions being updated periodically, growing older and older without a family to call their own.  Hopefully they have not been moved too many times.  Multiple changes in family is NOT good for children.  So I just continue to pray for them and hope that they are well and that a family match will be made for them soon.  Often it is not that there are no families willing to accept them.  More often, it is the case of overloaded case loads, or case workers that have decide that only a particular family will do, and so they bar matching based on a prejudice (family needs to make a certain income, family needs to be the same race, family needs a stay at home mom, family must have no other kids, family must be experienced, must be a two parent family, must be a particular religious denomination, must be a certain age, must be in a certain locale, etc...), without giving the child a chance to know the love and stability of family.  While there are laws in place to protect children from the preconceived notions of caseworkers, it is hard to get them enforced.  So some kids sit in foster care while literally hundreds of families have expressed an interest.  On the adoption boards, it is heart breaking when you see a child that so many have expressed a desire to adopt, but they are rejected by the caseworker for no real reason.  And for years the child loses out on having a good family.  While I believe that the foster care system is far better than some alternatives (like institutionalization, which is not as bad in this country as it is in others), there is just so much bad practice, poor oversight, caseworkers and such that like the power and have forgotten about helping the kids, and so much bureaucracy that paperwork trumps the needs of the child very often.  But it is a necessary function to keep kids safe. There are GREAT caseworkers out there, great supervisors, great, caring compassionate people in all levels that DO care for the kids and have to fight with the system they work for to ensure what is best for the kids.  I have been honored to meet and work with quite a few of them.  It is a system worth fixing.  Okay, off my soap box now.

So, anyway, where was I, oh yes, after we were not chosen for little Lucas, we continued, as we had been, sending out our inquiry forms to any child's caseworker we thought we were a potential match for.  We were in contact with The Cradle out in IL about a beautiful baby girl with Apert Syndrome.  During the process, one of the people I talked to was surprised I had not seen her picture, so she told me the link to go to.  She did not, however, tell me that it was a private link, as most of the agencies I had been working with had a handful of public photos with the child intros.  She was such a beautiful baby, that I shared her picture on an email list as I child I was hoping to adopt.  But when the agency found out, there was a lot of backlash, and we were taken out of the running because of it.  I never thought to ask, as I had not run into many private pictures before that from the agencies I had been working with.  And the few times we were given private photos, it was stated right up front that they were private and not to be shared.    So that miscommunication ended that exchange. 

During that time we were contacted again by the Texas case worker.  For a third time, (once before we were in the loop and now twice since) the family who was selected for this little boy backed out once they got his full disclosure packet.  There were doing another family selection and wanted to know if we were still interested, and to make sure that we understood what global developmental delays, product of a consanguios relationship, prenatal exposure to drugs and alcohol, and a benign cyst in his head meant.  She was tired of people saying they were ready to parent him and then when they go the reports and such, realized he had more issues than they realized.  So I said yes, we understand what that set of issues could mean for his present and future, and yes we were still interested.  We moved on to the next level of selection and went to the three family committee (or rather our social worker got all of the information together and went to the meeting as out representative as is usually the case).  A few days later we got a phone call.  Our family had been selected for little G, who was now 2 years and 7 months old.  The information packet with pictures and his full disclosure was being sent to our social worker for our review.  (and we were told it was private info not to be shared until we signed an intent to adopt and the process was fully underway).

So about a week later we got a call from out social worker and went to her office, expecting a thick folder with his disclosure, after all he was only 2years 7 months old, how much of a folder could he have.  When we arrived, she told us to sit down, and had an odd look on her face.  First she handed us a stack of pictures and a letter that had come with it which was summary of his issues essentially.  He was quite cute.  Then she walked into her office and brought out a huge stack of papers, over 1500 pages.  THIS was his full disclosure.  half of the bulk of it was redacted reports of the early CPS visits, the allegations, the court findings, etc...  Both from before he was removed from his home and after.  There were the reports from the foster home she had been in and why after only a few weeks the foster parents requested that he be moved.  This little guy, at not even three years old, had gone through so much.  First his conception was not a consensual one, and was a very traumatic even for his 14 year old birth mother.  As she had no way out, she turned to drugs (primarily any pills that a 14 yr old can get her hands on and alcohol) to deal with the painful and trapping situation she was in.  He was actually fairly healthy when he was  born, and was sent home with his young mom to home that was really not a safe place for either of them. My heart continues to go out for his birth mom, even today.  She has walked a hard and rough road so young. The initial CPS call had been before he was born, but the findings were unfounded.  During the first year of his life there were over 5 visits to the home.  By the time he was 13 months old (when he and his mother and her sisters were removed from the home) he was emaciated, did not crawl, or walk, or talk, and had only two reactions when he came into foster care--if offered a bottle he would suck it down as fast as he could, and if someone raised their voice or their hand, he would visibly flinch (something he still does to this day).  He did not play with toys, did not interact with other people, and as one foster parent described him "was like a wild animal". 

G had bounced through five foster homes before his parental rights were terminated.  He learned to crawl around 22 months old, and walk at 2 years 2 months old.  He started to say words around that time.  An MRI revealed an anacroid cyst in his head (left side), and genetic testing ruled out a number of possible disorders.  He was diagnosed with PDD-NOS when he was 2, as well as his global developmental delays, hypotonia (very low muscle tone), weaker right side, and potential minor genetic issues not screened for due to his beginning.  We read every page (1500 pages...) of his full disclosure packet.  We could understand why he had been turned down by four families prior to us (one was a former foster family before they started family selection), his paperwork was daunting.  But we talked about it and decided that we felt we could handle his issues.  So a week  after we first got his information (it took a few days to read it all), we sat with our social worker and discussed his issues, and then we signed the intent to adopt and set it back to Texas.  That was in early October.  A couple of weeks later we had a conference call with both social workers, his foster mom, his speech therapist, his occupational therapist, and his physical therapist.  We asked a lot of questions and got more concrete information about him as a person, not just a report on paper.  We even got to hear him on the phone for the first time.  He was only saying one or two words at a time, but he had a cute voice.  His echolalia was evident, as he would repeat what his foster mother said.

 We arranged to go down to meet him in person and spend time with him a couple of weeks later.  So November 2nd we flew to Texas, and spent 10 days with him, mostly at his foster home.  His foster mom was great.  She was the one who had gotten him into early intervention and worked hard with him on his developmental growth.  We learned of his incredible fear of water, his love of pushing buttons, and his sweet smile.  We even got permission to have him a couple of nights at our hotel, and took him to the zoo.  He was very overwhelmed by the zoo at first (and by the fact that he really had only known us a week), but after we sat quietly by the duck pond and fed the ducks with the quarter machine duck food, he started to relax and was able to enjoy himself.  We took him to a couple of playgrounds, which he had never been too, and he loved it.  It was a great "get to know you time".  I wish we could have taken him home then.  But alas the process is long.  We had to wait on paperwork and such.  We also got to meet with his doctor while we were there, and got information to take back to the doctor we had chosen at home.

When we left, we had high hopes that he would be home for Christmas.  Late in November, while all of our paperwork was in process (interstate adoption can actually be harder than inter country adoption, as I heard from someone in Belgium and someone in Canada, it was easier for them to adopt a child from the US than it is for someone from a different state to adopt a child within the US--something is wrong with that picture).  We got a call from the international agency we had been working with.  Our dear, dear Rustam was available again.  Upon further medical testing, the family decided NOT to adopt him.  So he was available.  So of course we filled them in on the in process adoptive placement, and as both parties were agreeable, we made the snap decision to get our dossier translated and sent to the region in an effort to try to bring our boy home.  The next day, we went over the new reports, some dated earlier than the ones we had previously, but with different information on them.  We felt jerked around by that point with the whole international adoption issues, and since we had G firmly in process and he was coming home soon, we did not want to jeopardize his adoption by chasing a ghost.  So we went above the agency's head to their parent agency, told our story and our concerns, asking for clarification of the information we were given and the discrepancies.  We still wanted to move forward, we just wanted to make sure it was real.  We got a reasonable explanation back from the parent agency, and were satisfied with their response.  however, the subsidiary agency got very upset with us for asking our questions above their heads (questions that they had been asked but could not provide satisfactory answers to).  They terminated our contract, and thus we lost Rustam again.  In hind sight we could have fought the hard fight and tried to get accepted through the parent agency to try to bring him home, but as it was, our funds for adoption were low, and though we could get a second mortgage on the house to do it, we really had to focus on G in Texas, as he was a sure thing, and Rustam was not.

So we again grieved for Rustam.  But we had to focus on preparing for G to come home.  We had a travel date of December 22nd to bring him home.  So our plan was to fly down on the 22nd, get all the papers signed, stay in Texas, with him with his foster mom, for Christmas (rather than rush him to unfamiliar territory right before Christmas, and then come home after that with him.  We were awaiting final confirmation of the travel plans, when on December 19th we got a call that said that a judge blocked the adoption because he did not think the child should be placed out of state (enter the joys of ridiculous financial incentives given to the state for placing children in state even when the agency has gone to extreme measures to place him in state without success, and thus turned to out of state to find a proper home). 

So began the most ridiculous and expensive part of our adoption journey.  There was no way that this boy, whom had been given up on by so many people, and had spent the past two months with daily phone calls, videos, photo albums, and his foster mom preparing him to move to our home, there was no way we were going to allow some short sighted stuck up judge to deny him the family he had been being prepared for.  So we fought, we called our adoption lawyer in NY, who could only advise as he had no jurisdiction in Texas.  Then we called every lawyer we could find in the greater Houston area.  Well, A did most of that work, I was focusing on my job a lot during that period as we were very busy at work, focusing on my job kept me sane, and it was our primary income to support our hopefully growing family.  most of the ones we talked to said they felt our pain, yes it was unjust, and not right, but they would not take the case.  The Texas agency had been told not to talk to us--though not all listened, because they hated the injustice, and they explained to us that it was a good ole boys club, and if they stepped on a judges toes, they would be "punished" by the judge ruling against them in the next few case brought to court, thus messing up foster care placements and adoptive placement just out of vindictiveness (of course they said this off the record, and I respect their need for privacy and the protection of their positions). 

We finally found a lawyers ballsy enough to take the case, and who charged an exorbitant fee.  A's niece was a new lawyer fresh out of law school and got us some information that we passed on tot he lawyer in TX.  Then on the adoption lists, I got some information about the Child Placement Act of 1994, which states that you can NOT be denied placement merely because of geography (out of county, out of state, etc...).  So the judge's ruling was illegal.  We passed this paragraph of a huge, multi page bill (so easy to miss), on to our lawyer in TX.  She was able to get the judge to recuse himself from the case (which saves face for him and fixed the problem for us as it went to another judge who was aware of the fight).  The legal costs topped $9,000--so yes we did take out that second mortgage on the home.  We were told that most of the time people just give up when they are denied.  And if we had not already "lost" so many kids we had been preparing for through the international adoption process, we might have been more likely to give up.  But it just was ridiculous NOT to fight against a prejudice and self-seeking judge.  He later claimed, for the record (trust me we heard about some things he said off the record (primarily about our family make up) that make me realize he is NOT a good man), that he had not realized so many attempts had been made to place in the state, which was not true as he was told that at the hearing in December when he denied the placement. 

That new judge said that he trusted the agency to make the right placement for the child.  So they contacted us and within 10 days, I was on a plane to Texas.  i spent a week with G so that he could get to know me again, and so I could try to explain snow to him as it was February and he had never seen snow like what we get up here--Texas was balmy to me in February (A had to stay home and work as we did not have the funds for both of us to be out of work and both fly down).  To make sure everything was by the book, the state requires an overnight visit in the prospective home prior to final placement.  That is usually waived for longer distance adoptions, but with all the issues the agency decided to make sure it was done.  So a caseworker flew back to our state with us, inspected the home as required, G spent the night while the caseworker enjoyed the bed and breakfast that was down the street.  She came over in the morning and we signed all of the final papers for his placement.  We got the normal six month post placement, pre-adoptive time shorted to five months, and were able to finalize his adoption in our own state.  July 31st was his finalization day.

So that is how Gonzo came to be our son.

I know this series of posts is entitled thinking, and you can think a lot more thoughts in a short period of time, but it take days to try to write it out. I will continue this story, as it is pertinent to what I am thinking about.   But right now I need to spend some times with my boys.  They are playing Monkey Ball on the game cube right now.

New name and some of J's history...

Okay, so while the blog address is staying the same, I have decide to change the blog title to more appropriately reflect the content of the blog.  While I originally set out to chronicle my daily actions toward losing weight, it has turned into a blog chronicling the transformation of my life in a multitude of areas.  So I have changed the name to better reflect that focus, which is much broader.

Okay, so Today I am going to talk a bit about my son's (J--age 4 & 3/4) journey, as we had a slightly shocking eye appointment today, and I just, for myself, want to process it, thus I will tell some of his story, mainly his medical stuff, focusing on his eyes after the initial history.

J was born a preemie (12 weeks early) to a 25 year old birthmom who had had 9 pregnancies (5 live births, 3 abortions, and J--probably more since then but I only know of a teeny tiny piece of her story).  J had no prenatal care prior to being born and about two to three weeks before his early birth she had gone to the doctor seeking an abortion, but was told she was past the 24 week mark and thus too far along.  She arrived at the hospital a couple weeks after that in labor with him stuck breech in the birth canal.  They had to perform an emergency c-section to get him out, as he was being crushed by the contractions.  He was bruised all over his body from the contractions crushing him, he was cyanotic, and had breathed in meconium, in addition to being nearly 3 months too early.  His apgar score at 1 minute was 1 (zero is dead).  We had the chance to talk to the doctor that delivered him, and she said when she pulled him out she did not think he would make it.  But oddly, this little fighter managed to have a 5 minute apgar score above 7.  So the doctors and nurses were amazing at reviving him, and he had an amazing will to live. He as just shy of 2 lbs 10 oz.  His birthmom contacted an adoption agency that day and arranged to sign him over to the agency.  As a single mom with five boys at home already, and with his likely daunting issues, she knew she could not take care of him and that someone else could.

Josiah had heart surgery at three days old, to close a hole in his heart that was normal for a developing baby in the womb but that needed to close with him outside the womb, as oxygenated blood was mixing too much with depleted blood, thus reducing the ability to keep his body oxygenated. He was on a blown oxygen as his lungs were not ready to breathe well enough, he later was slowly weaned off the supplemental oxygen during his 2 1/2 months in the hospital.  During the first two weeks, Josiah developed a Grade III brain bleed (intraventricular hemorrhage--IVH) on the left side of his brain and later a Grade IV IVH in the right ventricle.  As the chance of death is over 50% for one grade III or IV bleed, the fact that he survived both a grade III and a grade IV on opposite sides is incredible. A grade III causes damage by increasing ventricle size due to the added fluid from the blood, and a grade IV causes damage by both increasing ventricle size and by blood actually absorbing into the brain tissue itself, severely damaging the brain tissue. On top of that, he developed post-hemorrhagic hydrocephalus, which is a build up of cerebral spinal fluid in his ventricles which puts a great amount of pressure on the brain from the inside, which in an infant forces the skull to open wider in an effort for the body to save the brain from being crushed between the ventricles and the skull. 


We brought him home at 2 1/2 months old directly from the NICU. He had a laundry list of diagnoses including: 1) Prematurity, 2) post-hemorrhagic  hydrocephalus 3) GER (gastroesophogeal Reflux) 4) ROP (retinopathy of prematurity) 5) Anemia of prematurity 6) neutropenia 7) Reactive Airway Disease 8) failed newborn hearing screening (twice) and 9) I can't remember what the ninth on the the list of 9 was now, I have it at home somewhere . So basically he was a child who could potentially be blind (ROP), deaf (failed hearing screens), on a feeding tube (narrowly dodged a nissen wrap thanks to a GI doc willing to trust us to do the hard work of feeding him every hour with thicken formula and working hard to get enough food into his body without it ending up in his lings--the first 8 months were hell, as he had to be fed every hour and had to remain upright for 30-45 minutes following each feed--try to imagine how life is like that), with risk of severe CP, MR, and a host of other issues.  We were told at the hospital that it is hard to give a prognosis, but to be prepared that he may be just barely functioning, may never roll over, may never speak, may never be able to do anything (BOY did HE blow that out of the water).

So, that is his basic beginning, to lead into what I want to talk about today--his vision.  Josiah has been going to the eye doctor since he was a tiny infant (in between trips to the ICU, the eye doctor even visited him in the ICU one time so that he would not miss his visit).  So for the first few months he went every couple of weeks to ensure the the ROP was resolving and the blood vessels were not getting too out of whack.  The reason they have them go so often, is that with ROP, the blood vessels grow incorrectly and can actually grow abnormally to the center of the eye instead of on top of the retina.  Retinal detachment can occur, causing blindness.  But if caught early enough they cauterize the blood vessels and stop the destruction of the eye, but that also results in impaired vision.  Anyway, we went every couple of weeks and though the blood vessels were growing slightly abnormally they kept growing int he right direction.  Appointments were then moved to every month, then every 3 months, and by 14 months old, his eyes were developed and the ROP resolved on its own. 

The second problem with his vision then came into focus ( :P ).  With the brain bleeds and hydrocephalus (all that pressure), there was some damage to the optic nerve on the right eye (right side brain damage causes the physical body problems on the left side, but the eye on the same side as the damage). He was down to seeing the eye doctor every 6 months. He was diagnosed with both far-sightedness--so he can see things farther away okay, but up close is blurry.  And with strambizmus (lazy eye) on the right side.  He got glasses that he needed to wear 3-4 hours a day, and we began patching the good eye to force him to use his weaker eye.  As he got older he would remove the patches, so we moved up to eye drops that cause the left eye (his good eye) to be blurry, thus making him use the right eye.  He did fairly well, and by the time he was 2 1/2, his second pair of glasses corrected the strambizmus well enough that patchign adn drops were stopped.  We were cleared to see the doctor one a year and have him wear his glasses 5-6 hours a day, especially when he was doing table work (coloring, puzzles, playdough, etc...).  Last year's eye appointment went well, his eye was still weak but seem to have stabilized, we did not need a new prescription as they had only slightly changed, and he was to continue to wear his glasses 5-6 hours a day.  Which he usually did at school.

Well, over the past few months he has been growing more and more resistant to wearing his glasses, and within the past few weeks outright refusing to wear them, even at school.  So it was time for his appointment, and today's eye appointment was a shocker.  Both eyes now require vision correction at all times (though is left eye is in the regular range, and has not changed too much), but his right eye has deteriorated horribly.  He can not see much at all, he could not even see the large E on the chart.  Technically, he is blind in that right eye now.  The doctor said probably he has not been wearing his glasses because his eyes have changed enough that the lens may make his vision worse.  So new ones have been ordered.  And we are going to implement an aggressive semi-patching routine with a high prescription strength lens on the right to try and get as much vision as we can.  We will be going back to the every 3 months visits to the eye doctor.  But he said there may not be anything that can be done.  With the brain bleeds he had, and the fact that we did do so much early on to strengthen that eye, it is very probably that the damage to the optic nerve was too much, and that it will continue to diminish.  But he is not willing to give up just yet.  The early patching and blurry drops should have corrected it.  He said they don't like to talk about the possibility of it not getting better until around 5 or 6.  Which is why I am just now hearing that this is a possibility.  As he has not been wearing his glasses these past couple months, that could be why it is such a drastic change from last year. 

I was not prepared for this news, as I really thought his eye issues had stabilized and we were just at the management phase.  But alas, that is not the case.  It is possible that he may end up legally blind in that right eye, and there is nothing we can do but try to stop the degradation as much as possible by forcing him to use the right eye.  It is going to be an interesting summer... 

Day 24--Is life really supposed to get MORE topsy turvy when....

Is life supposed to get more topsy turvy when you decide it is time to take steps to make your life better? Maybe that's why they call it transformation?...

I suppose it makes sense, as in order to change and move forward, you need to address all of those things that are holding you back from reaching your full potential.  So when it comes time to move, you have to detach all the lines clinging to you.  Which means that situations will arise that I need to find a way to deal with effectively and gently (neither of which I did this past week), so I can let go of what ever is holding me back and actual move forward. So after a rough weekend and start to the week dealing first internally and then externally (and now both) with some long standing issues, I was hoping for a chance to breathe.

But alas, when I got home last night there were two empty beer can sitting on the table.  As I don't drink beer (or extremely rarely do and NEVER the cheap tasteless stuff) and the only other person who had been in my house while I was gone was A, well it seems that A has decide to make it clear that drinking is still an issue.  I have known it was still going on even though A kept saying "I've been sober since June".  I have been able to smell it on A, and I have seen the empty cans in A's jeep.  But I have chosen not to address it with A as I feel that since we are no longer a couple, it is none of my business if A wants to continue to drink.  It just bothers me that A was drinking in my house (which I am sure was probably happening before as A gets ready there every day and spends a lot of free time there when I am gone during the day), and that A left the cans where the kids could see them.  As I had a bunch of stuff on the table I did not notice them at first.  G sat down to do his homework and he was the one who mentioned them.  He expressed that he knew whose they were, and seemed very sad, as A had promised him that the drinking was done, no more beer. 

I am actually less upset over this than I thought I would be.  In some ways I am relieved because I have not had the energy to bring it up, and have not felt it was really any of my business.  So i left a note thanking A for being honest with me about the drinking, and asked that the cans not be left where the kids can see them.  So, that was a good diplomatic solution, as A is free to live life however A sees fit, and I am also free to live my life the way that I see fit. 

It is a very calming thing to know that you don't have to get upset about actions that in the past had been very upsetting.  We are not together, we are living separate lives, and therefore I do not need to worry how A's actions and choices are going to impact my life (well at least not as much).  I feel an odd sense of peace about this.  So it is not as topsy turvy as I though I was going to feel when I started writing this post about 12 hours ago.  Yeah, I am just getting back to it.  I picked a $30 writing assignment at 11:15am with a 12 hour deadline, and so have had to focus on getting that submitted after the kids went to bed.  It was more work than I anticipated, but i was able to submit the project at 11:07pm.  So i made the deadline and hopefully it will be approved, and I will be $30 richer.

Anyway, I did laundry at the laundry mat this morning after dropping the kids off, so didn't get to the library until around 11:00, and then started this blog before realizing I needed to see if there were any assignments up for grabs.  Which of course, there were and I spent the rest of my morning doing that.  J had aquatic PT today, so my work time was an hour shorter.  He did GREAT at swimming.  I was so proud of him.  His legs are scissoring more even in the water (hip abductors seem to be getting tighter) and the past few days I have noticed it more in his left than in his right, which is not normal for him. So I think its time to see his orthopedic surgeon for a followup and a hip x-ray.  I am praying that the left hip has not dislocated (with the spacticity it is always a concern as the tight muscles and tendons pull on his bones--which is why he has malformed feet even with bracing since he was a baby).  Its been over a year since his last x-ray, which showed some wearing of the socket, and flattening of the ball, which is why we all have been trying to get him UP on his feet as much as possible.  If the hip joints get too far out of shape, his ability to walk will be further compromised.  I know you are probably thinking "geez Heather, don't you have enough going on without worrying about these possibilities?"  but it is not worry, it is awareness of them so that I can ensure that we can proactively address the issues in an attempt to prevent them rather than having to react when something does go wrong.

Okay, it has been a long day (aren't they all) and I have neither read nor watched netflix today--I have been trying to get some free relax time in to soothe my soul, which fun reading in particular does for me.  however my eyes have been tired and burning (too much work on the computer) by the time I go to bed the past couple of weeks, so reading is hard.  In that case I watch an episode of a show (movies are just too long).  But tonight it is time to just crawl in bed and sleep.

Okay on to food for today:
Breakfast was a small (actually real portion size as opposed to the mega sizes you get elsewhere) sausage, egg and cheese on a English muffin from Cumberland farms (only $1.79) when I stopped to get gas.  can you believe these gas prices?!?!Oh and a medium coffee with cream and sugar

I did not have time for lunch today, so when I got home at 4:00 I had a bowl of Cheerios with milk, and then a piece of bread with peanut butter on it.
At 6:30 we had dinner, which was Tuna fish sandwiches, homemade french fries and canned peaches.
I drank 4 cups of tea throughout the evening.  I think I am going to have a small piece of toast with butter before I turn in, as the tea has given me heart burn, which will make it hard to sleep if I don't put something else on my stomach.
I feel like I have been seriously lacking in the vegetable department this past week, which means my kids have to.  that is never good.  I will be planning better.
I

Day whatever--18 I think it is, it's been a LOOOOONG day

SO...Today was abit of a crazy day (why does it seem I say that lot).  In the end though it turned out to be a GOOD GOOD day.

So this morning I was getting myself all worked up about today's pulmonary appointment for Josiah with the new doctor in Albany.  As I had had such a hard time dealing with the office of our primary doctor the other day trying to make sure that J's medical records were faxed correctly, as when I called Albany the other day they were not there yet (problematic,annoying, upsetting, see Tuesday's (day16) post for more info, etc...).  so I was getting myself unduly worked up for this appointment.  So after I dropped the kids off at school, I went to the pond.  It was a nice, though crisp, morning.  I first tended to the car, refilled the washer fluid, checked the oil and transmission fluid, all that jazz.  Then I headed for the path around the pond.  I needed to center and de-stress as I knew I was allowing undue stress, by worrying about the appointment for the afternoon.  So I did four laps around the pond (a little over a mile total as 3.5 laps = 1 mile according to the sign).  It was great to walk and breathe, to enjoy the spring like feel, talk to the ducks and the robins, etc...  (Yes I know there is a winter storm warning tonight with the prediction of 8-12 inches of snow, but I am believing that it will fall east of here instead).  So it was a good releasing walk.

Then I prepared my vanilla yogurt with instant oatmeal and dried cranberries, and enjoyed my breakfast.  I did scrounge enough change in my car to buy a cup of coffee at the gas station.  And I had a bottle of water already in my car.  After breakfast, I headed over to the library to try to get some work done as I have had a very unproductive week with my writing.  I have a couple of deadlines today that I need to meet before midnight, so I was hoping to get those two done this morning, but alas I still have some proofreading and a bit more info search on one. That is what I will be doing after I finish this blog--blogging helps me let go of the distracting thoughts rolling around my head and clears the way for me to be more focused. 

Anyway, I was at the library and A called.  We talked about A finding a new job, so of course I start looking up numbers and checking A's email to see if any of the resumes I sent have been replied to.  I gave A number's and then looked at various help wanted sites and gave numbers and such to A for those.  Then A asked me to send resumes and cover letters to a couple of the places, which I did---Okay, okay I know you are reading this thinking "isn't A your ex?  Wasn't part of your reason for leaving is that you felt A needed to grow up and learn to be independent?  Isn't this an awful lot like a codependent relationship?  Does it really help YOU to do all of these things that A should be doing?"  Yes, Yes, Yes, and not really.  It starts out innocent enough, I offer a little suggestion and am willing to help a bit and soon I find myself getting more and more irritated as I end up doing more and more.  So I am getting better as saying what I did today after I felt my tension, stress, resentment, and all those old feelings starting to rise up--I said "Okay I will send this one resume then I need to get some of my own work done."  And A was okay with that.  So it is progress, no guilt trips from A, no buried resentment from me.  We are making progress towards being friends and showing respect and compassion for each other.  I still need to learn to say that sooner as A is capable and I thank would be willing to do what needs to be done if the door where shut.  I have just never been good at shutting the door when I see a need.  That is not a bad thing, but it can lead to bad things like resentment and being over burdened and not allowing the other person to be all they can be too.  It is a fine line, but one I plan to walk with anyone I meet.  The world needs people who can see others with compassion, who are willing to reach out a helping hand to someone who may have fallen down.  Finding the line between helping them do what they at that moment are incapable of doing for themselves (and that changes moment to moment as we all reach breaking point in some areas), and giving them the push they need to fulfill their own needs and be proud of themselves.  Definitely a hard line to gauge with some situations.

After that I did work on my articles, but time was running short.  So I did not get as much done as I wanted to.  Then I was starving (stress makes me VERY hungry) and I had only brought crackers for lunch.  So after filling the car with gas and setting aside money for later I had a couple dollars and swung by Taco Bell/Long John Silvers and got a piece of fish and a soft taco supreme for lunch.  It helped calm my frazzled nerves as I went to pick up J for his appointment (I know, this eating for emotional reasons IS something I am working on, but sometimes when new coping mechanisms are not working and you NEED to calm down, you do use the coping mechanisms that you have in the past.  It is THE vital reason why when someone is trying to give up an old coping mechanism (or "habit" as most people say), that you simultaneously replace it with a more healthy and doable coping mechanism (positive habit).  The switch when super stressed though takes more time than when it is just a regular day.

Anyway, I picked up J from school and we headed for our 1 1/2 hour drive to Albany to get to the doctor's office.  You would never know I spent 8 years living in the greater Boston area, and some of that time commuted daily into Boston, (and later into Billerica on the 128 spur)  If you could see how much I HATE driving in cities, especially when I don't know where i am going AND have already been dealing with stupid stress all day due to the impending appointment.  So we finally get there, and thank GOD (literally, not just saying that) they offer free valet parking for outpatient visits, as by the time I pulled up in from of the building I needed to be at (Albany Med is a HUGE place) I was running a bit late.  I had to jump out, put J's wheelchair together.  I drive a sedan now, and it won't fit put together as it is not a standard sling seat wheelchair, it has a solid seat and back which pop off  to fold and the big wheels pop off as well.  So it is handy to collapse, but it still takes a bit of time to put it together and lock everything in place before I could get him out and head inside the building.  It makes me miss my station wagon (the car that died last month and I just sold to the auto salvage this week).  I used to be able to just pop the back off and fold the handles down and leave it together the rest of the way.  But I am ever grateful for the car I have as it was true gift from God.  A good car, runs well (does need a ball joint soon but that is new) and had lower mileage (under 100K is low to me), and I got it for $400 (even though I offered $500 which was what I had at  the time).  It was worth over $3400 according to Kelly Blue Book.  But circumstances and timing were such that I was available to be blessed by it when it became available to be a blessing to me.  Anyone who tells me god does not meet our needs either has never had a true need (need and want are totally different things) OR is just not paying attention.

So, I am just rambling on nd on tonight, holy cow.  We went upstairs,and I just did not know what to expect (having dealt with over 2 dozen doctors for my kids in the last 5 years, I have experienced the whole gamut, the good, the bad, the ugly, the arrogant, the kind, the understanding, the nasty, the foolish, the compassionate, the fun, etc....), and I was humbly and pleasantly surprised by how nice, how congenial, how joyful and gentle, and fun the whole place was--from the receptionist at the desk (who was bogged down with phones ringing, paperwork, checking people in--she was really extremely busy) to the nurse who took his vitals and history, to the doctor himself--It was a kind, happy, amazing group.  If you have need of a pediatric pulmonary specialist and live near Albany (or like us live 100 miles away), go there, they are top notch.  My stress just melted even while we were in the waiting room because the energy of the place was peaceful and joyous.  I have never heard so much laughter--from patients and parent, from nurses and doctors, from the administrative and lab staff--I was just amazed....  That was most certainly a gift from God, from eh Almighty, From Source, from the Universe, from the Great Dragon, from the Well of Intention--whatever YOU call that Powerful Consciousness that all things originate from.

Anyway, J's oxygen sats were at 100% and with a cold no less, so that was amazing!!  The doctor was very boisterous and fun, a rough and tumble kind of guy who really kids with the kids.  A Patch Adams follower if I am not mistaken by the way he interacts with everyone.  It was so refreshing after all that stress i had built up.  J was responsive with him, still a little clingy to me, but much  more interactive and open than he usually is with a new person, particularly a doctor.  J's lung sound good.  He feels the medication regiment is good, though he did add Zyrtec for whenever J has a nasal irritation (allergy, cold, etc...) as with his weak ability to cough, he can not adequately clear his airway, which has been an ongoing problem when he has post nasal drip as he has had the last couple of weeks.  He did give me a sheet with breathing exercises to work on increasing J's lung capacity and diaphragm strength, but did say that J is really too young for them, but it can't hurt to try to introduce them to him if I wan to, but to just be aware that he may not really be able to understand.  It si the same thing with stretching, he understands to a point that stretching his arms and legs will help him do more, just like these breathing exercises with help him breathe better, but he is four and our natural instinct is to listen to our body,a dn when it says "ow" to stop.  That is a very good body awareness.  however in J's case he will have to learn to override that to to what degree is safe to override it in order to see maximum benefit.  But yes he is too young to really get it, but not to young to introduce it to him.  So I found it great that the doctor gave us the exercises.  He also is switching his cream for his skin issue, which makes me happy as the last script just was not helping as much as it needed to.  J still has an undetified skin issue.  He really needs to see another dermatologist.  But this doc beleives as I do that it has some sort of possible allergic reaction or body over reaction to a virus, like colds.  So he is trying a differnt approach than the other doctors (plural yes) have tried to manage this itchy skin issue.

Anyway, it was really great to get such a good Doc.  We go back in July and he wants to talk about doing a trial break from the meds for the summer as J rarely gets sick in the summer.  I am all for that, as the long term side effects of ANY medication are bad.  So if we can find pockets of time when his body can be safely med free, I am ALL FOR IT.  I LIKE this doc.  That is a huge relief.  (Most of J's docs I like becasuse it is important to trust your doc and if yoiu don't then it is vital to find one you can so that you know you are all on the same page).

On the way home J wanted McDonalds for dinner, so we swung into horrible-for-you-food place and he got a chicken nugget happy meal, and I got two dollar menu cheeseburgers and a dollar cup of coffee (I had set aside just enough money to cover our meal, am I good or am I good).  I had a bottle of water in the car as well.  We then drove home, or rather set out to drive home suddenly realizing that it was nearly 5:00pm and we were int eh downtown of a large city, which meant dealign with rush hour traffic.  So it took MUCH longer than planned to get out of Albany and onto the Northway for the 2 hour drive home.  I picked up G from my Dad's (originally A was supposed to have the day off but yesterday soemoen called and asked for a switch and A said yes!?!?  So my mom took a half day today to pick G up from school and took him to her house, but she and my step dad had practice tonight (my mom and step dad are professional singers now, they just had their first album released!!!  but they are new to it, and they also continue to sing with their singing group which is where they were headed tonight).  So they dropped G off at my Dad's which is where I picked him up at like 7:30, well it was 8:00 by the time I left after chatting breifly with my dad and my brother.

So it was a little after 8:00 when we got home, did jammies, had a snack, did meds, etc, etc... 

So I am writign on my blog, thinking about my articles, and had a snack of airpopped popcorn (which luckily did not disturb the kids) with shaky cheese on it.  And a couple fo cups of water.  I also snacked on few jelly beans and earlier (I forgot to mention) on the ride home J was having some skittles and I had a handful of those ~20 maybe.  So a little too much pure sugar today on top of both lunch and dinner being major chain fast food.  So not a good eating day overall.  My body, brain and spirit are tired.  I really  have to breathe more and stress less about things like new doctors.  It really wiped me out, but I am SO SO SO glad that the doctor and that office are both exactly what J (and I ) need for his pulmonary stuff.

Well, I best get my articles finalized and get to bed.  I  know there is a possible snow day tomorrow for one or both of the boys depending on exactly where, when and how this winter storm hits (final storm of the season I hope, I am aching for spring in the Mountians, outside my front door (at least I get a taste of spring everyday when I take the boys to their schools as robins, ducks, and melted snow--leaving BARE GROUND--are things I can find down there).  So, tata for now...

Day 17 (right?)

Sorry for the over 24 hours without an update (I know I don't have you waiting on the edge of your seatrs, but it is fun to pretend...). 

Okay so yesterday just was a really long day.  After I got hoem I had a letter from the state tax department sayign I am being audited this year (I had expected an audit fromt eh federal, but I figures the state would be fine).  So now I am going back to HR Block on Friday (as I signed up for audit protection as I knew the federal would likely be flagged--anytime you have a major change in your income and refunbd status you risk being flagged).  I just had been planning on  my state refund like NOW, and was surprised that they also have chosen this year to aduit.  So more stress on top of a stressful day. 

Last night I got a call that we were having my Mother's birthday party, half an hour before we were supposed to be there (her actual birthday is today).  So that was an unplanned thing, but it was fun. 

We had a yummy roast, mashed potatoes, and salad.  then cake and ice cream for dessert.

It was an overall stressful day though, so I am still feelign quite tired today.  Today was also a crazy day as after dropping the kids off to their schools (over 50 miles away) I had to turn around and come back to our home school district for J's CSPE/CSE transition and CSE meeting for next year.  I was a few minutes late for it.  It was a long meeting (nearly 2 hours by the time I got out of there), but I thkn it was aproductive meeting.  J will be in our home school for Kindergarten, in the only K class they have, and this year's class only has 6 kids in it.  He will get a 1:1 aide for specific times (~3 hours a day) and they are aware of the physical assitance he will need to transition from wheel chair to walker, walker to regular chair, chair to floor, etc.... as well as the toileting assistance (you can't expect him to toilet himself when he can not stand without holding on and has only one good hand, I tried to pull my pants down mimicing 2 bum legs, poor trunk balance, a locked left arms and having to lean using one good arm to do it--trust me, he will figure it out before I ever will).  So the joys of being cogitively, socially, and emotionally "normal" in a body that is tripelegic.  But he does work hard.  the 1:1 aide will also assist him so that he can participate as much as possible in regular PE,l which I think he will love and will help motivate him in his efforts towards independent mobility.  He is sucha  gem.  Overall the meeting went very well.

After the meeting I ran home, let the dog out, did a 2 second check of my email and gathered up J's swim things and headed out the door with just enough time to get back to his school and pick him up for his weekly aquatic PT session.  I did swing into Nice & Easy and grab 2 slices of pizza and bottle of water onthe way down for my lunch on the go.  I should have planned better and made a PB & J sandwich, but alas I did not. 

So now we are home and I am making a meat loaf for dinner.

**UPDATE**
Just a quick update to finalize food journaling for this day.  I had meatloaf, rice, and corn for dinner, with a little ketchup on the meatloaf.  I also had 4 oz jiuce and a bunch of water.  I DID eat a few jelly beans in the later evening.

Day16--Breathing, breathing

WELL!!!

It has been one of those days...ya know one of THOSE days....

I have spent most of the morning on the phone with six different doctors offices.  Transitions specialists is never easy, especially when you have a primary care doctor who is at the office (at our center) one 1/2 day a week and serves hundreds of children in four different health centers, but is the only pediatrician within 40 miles of home?  I am VERY seriously looking for a new primary care doctor, and maybe I will go with a family practitioner, as all of my choices are limited. 

So basically the ball is now well underway for the switching to the new neurosurgeon--that was the easiest set of phone calls of all.  I thought that the switch tot he new pulmonary doctor was going well, but on double checking the new one has not received his records and the old one will not accept a request over the phone from me, but would from the doctor, however the new doctor has a policy that they never request records and told me to have my primary doctor call the old one to have them sent, and well the challenges I have had with the office staff there have been mind-blowing and are long in frustration.  So I am actively looking for a new primary for the kids so that there is some semblance at least of continuity of care.  SOMEONE who will actually read the reports from the specialists and put them all together to consider the entire child--that is what the primary is supposed to do. 

So I was frustrated earlier to the point of tears.  So I went over to the pond and finally most of the path is melted, so I walked a couple of laps around the ponds.  There were a few ducks, about 5 robins, a red wing black bird, and flock of geese flew over head.  The brook by the pond was completely free of ice and the pond is starting to melt.  So spring is here (today is the first day I have seen a robin).  So that walking, breathing, and recognising the signs of spring was all very helpful.  It is necessary to refocus and rebalanced my core, my spirit.  I am now at the library and listening to some subliminal audio stuff.  Every little bit helps.

So, for food journal...
I ate a vanilla yogurt with one packet of oatmeal (instant) and dried cranberries mixed in (I've given up trying to cook the oatmeal without anything to cook with, so I just mix it dry into the yogurt, and it works beautifully).  I also had a bottle of water.

After my lovely (ack!) conversation with the final doctors office before I had to walk away from it for a while I did give into my emotional eating issue and on the way to the pond stopped to get coffee (which I had planned on) and gave in to a little single serving bag of pork rinds (which I had NOT planned on).  So a little slip, but I did resist the urge to stop a fast food place and down a thousand calorie value meal, so that IS progress and I will celebrate it.

For lunch I have left over potatoes and ham and carrots in the car waiting for me.  With a bottle of water of course.

And I just burped and can taste the pork rinds, that is a flavor that sticks with you for a long time.....blech.

Day 14--hair cuts, hydrocephalus, and Anticipating tomorrow's weigh in

Well, the evening went alright.  I had to give G a hair cut as his hair was just getting out of control.  I had figured I would do a simple trim with scissors, but alas G has  LOT of sensory issues with his head.  The joys of autism....

So what was going to be a quick trim before bath turned in to a full blown hair cut with the clippers because he moved at the wrong moment while I was trimming and ended up with a nearly bald spot.  So then, it was a bit of a wrestling match to get him to sit and calm down so that I could quickly buzz the sides and back of his hair and then a backwards buzz on top to keep the top a little longer, like he likes it.  It came out nice, but it takes SO MUCH out of both of us to do a full hair cut.  He is okay with the clippers as long as they have a guard on, but terrified of them when I have to take the guard off to clean up the back  neck area and his side burns (for an eight year old he has the most amazing side burns--and always has).  He is getting better as he gets older, as it used to take one person to hold him and the other person to quickly buzz his hair.  We had a friend/neighbor who owns a beauty shop and she was really good with him, though even there we had to double team him.  He now will sit fairly still, and let you do it, as he is realizing that it will be done faster that way.  But the tickling hair makes his squirm too, more that most people would.  Over all though we got a good hair cut and then he got int he shower, which helped get all of the little bits of hair off.

J asked me if I would cut his hair too, but I told him that I am out of energy and I would do his hair later this week.  His hair does need a cut, but where G's hair is straw straight like my own (must be the shared Native American blood in us), J's hair is made up of those amazing little, tight spring curls as he is mostly African American.  So doing J's hair requires more energy, creativity, and slow work than buzzing G's hair off.  And as J does sit patiently while you work on his hair, I enjoy taking the time to think about what style would be good for him.  I am really tempted to grow it longer and see what we can do with it, but it is already getting very difficult to pick out each morning, as it forms mats overnight. But both boys have amazing hair.  G's is actually darker than J's hair.  G has jet black straight hair, and J has dark brown curls.

I had a little cry tonight after the kids went to sleep.  Sometimes you just need to cry.  I hate it when the kids are sick, it brings back memories of sitting by J's hospital bed during our numerous ICU stays when he was a baby) and wondering if he was going to make it.  I had a moment of that tonight, because even though he is getting through this cold/sinus/URI, his temperament has been really off--very moody, very changeable--it makes me worry about his hydrocephalus.  I have been trying to find a neurosurgeon closer to here, as his neurosurgeon that did his original surgery and that we have had do all the follow ups is now 8 hours away.  So, now that I am 99% sure we are staying here at least for a few years, I think it is time to find a neurosurgeon closer to follow J.  I had done some initial contact over teh last few months, but have yet to set anything up. Last year's appointment showed a possible increase in ventricle size, but he was showing no symptoms, so the doc recommended that we seek out someone who specializes in static hydrocephalus to follow him.  I have worked on that some (it is not a common speciality). I think I will be working on that more tomorrow, to get him an updated CT scan and in to see a new neurosurgeon.  He should not be this moody, even when sick he is usually not moody.  And as personality changes, particularly moodiness, is an early warning sign of increased pressure, I am feeling very strongly the need to have him checked out.

I did sit by his bed and pray over him for healing for a while. So I feel confident that the Spirit will lead me to the right people for him.  So tomorrow will be productive in that direction.

It is now time to head to bed.  I will just update the food journal as to what rounded out my day....

Dinner was Tuna Helper (generic brand) doctored up with left over veggies and some extra pasta.
And my evening snack was 1/2 sleeve of whole wheat crackers with cream cheese.
And I had a cup of tea and a glass of water.

Tomorrow is my weekly weigh in, it should be interesting...

Day 12--darn germs, darn them all to heck!!

Well, now everyone is sick.  I am not too bad just exhausted.  G was home this morning but I wanted to see if J would be okay to go to school, so we headed out (A came over to be with G).  By the time we got about 3/4 of the way there, J's eyes were glassy and he was coughing and his energy level had dropped.  So I called the school and let them know he was not coming.  Then we turned around and headed home.  You know when you have been sick and you still don't feel great, but if you get up, get ready, and head out, a lot of times you start feeling better than you thought you would?  Well that was what I was hoping for with J (and myself frankly), but alas, a bit more time to rest and recoup is at hand.

So we went to the bank to deposit some money to cover a check I wrote yesterday (I hate doing that--sending the check before the cash is in the bank, but oh well, I figure it will take a day or two to get to the place, so I had time as I was depositing cash).  Anyway, we came home.  I have been low on food and low on cash (waiting for a couple of checks that seem to be taking way too long in coming and playing phone tag with people in my effort to find out where they may be). I called community action to get a food box, then loaded trash and recyclables in the car.  I got stuck in the driveway, so had to get the landlord to come sand and help push me out (the landlord was already there with a couple of painters to paint the other half of the duplex which is for rent).  Then I headed out,dropped the trash and recyclables off at the transfer center, and went to community action to pick up a food box for us and a food box for my Dad's house that A can take over to him. 

When I came back A helped me unload the boxes and the landlord came up to A and apologised for not recognizing A the other day when greeted, as A had contacted him once about an apartment.  I was saying that originally A had thought of renting the other half of the duplex, then the kids would be able to go from one home to the other with out having truly separate houses.  It would probably be easier on them.  He asked why A didn't take it, and A said it was just too much money.  SO the landlord offered the apartment to A for $200 less (or we could have a lower flat rate for the house and each pay half, which would lower my rent by $100).  Anyway, that is something A is thinking about.  I am not sure now if it would be a good thing or a bad thing.  It would be good for the kids, I still think that the more they can feel like they have access to both parents the better, but will A respect my boundaries?  Will I have the peace and be shown the respect that I would want if A lives next door?  or will it be always a "see, you can take me back?  See we are great together?"  and then all the crap that our NOT healthy relationship was could be there a lot (bickering, fighting, A drinking, etc...).  So, well it is something to think about.  And can A pay that PLUS utilities or will I be forever hearing "help, my electric is getting shut off." or "can you cover this month's rent, I don't have it".  Those are MY worries about the situation.  The pros are that the kids would have one big home with both parents while A and I each have our own space.  All of the kids toys would be here and we would not have to worry about whose house should have which of the big toys, videos, or games.  And if one of us needed to run to to the store or to the dump or something, the other would be here to watch the kids.  It is very handy, I know because when i first moved here my sister lived int he other side of the duplex, and both being single moms with two kids, it was extremely helpful to share a house like this. 

Anyway, after that I put away the food and made mac and cheese and hot dogs for the kids for lunch at 11:00.  J's appetite is finally back.  I had some box mac and cheese and a hot dog as well for lunch with a cup of water.  I had not had any breakfast aside from a cup of coffee with cream and sugar, which is odd as I usually need breakfast. 

A laid down in my bedroom to sleep as with taking care of the kids, A has not gotten a lot of rest.  I laid down with J after lunch so he would take a nap, and I fell asleep for about 30 minutes--which is rare for me to do int eh middle of the day.  G has been playing Harry Potter.  My sinuses are driving me nuts and making me sleepy.  But I am finally on the computer and will hopefully get an article or two written before J wakes up.

This afternoon around 3:00 I had a bowl of cereal (all bran strawberry medley) with skim mil and 2 pieces of toast with butter (so its like I ate my breakfast after lunch).

I'll write more late...oh J is awake, so probably no more computer time for a while.

Day 11--how do you release anger so that you can BE love, peace, etc....?

***WARNING: RANT BELOW******

(Which probably means I will say things without thinking or meaning fully, so bear with me, THIS is what I am trying to overcome within myself so I can live a life projecting Peace, Joy, Health, and Calm (which is far from where I am today))

Today has started off quite difficult.  I got J ready for school, as at first he seemed to be doing better and he really wanted to go to school.  After getting him dressed, his eyes started to droop and his cough picked up, so I asked him if he wanted to stay home or to go to school (as he was looking like another day home would be right, and school might be too much today and flare up the illness).  He insisted that he waited to go to school.  I had arranged with A to come over in case either of the kids needed to stay home, as G was kind of off yesterday.  but G woke up, no fever, no cough, not feeling ill at all.  So I thought to myself "well, that will give A a change to rest" as A is sick too. 

So A arrives and looks at J and says, is he well enough to go?  And I said that he was in that gray area between definitely well enough to go to school and definitely not well enough.  And I told A that he had said multiple times that he wanted to go.  So I am in my room getting my socks on and I hear A saying to J "you could just stay home with me, don't you want to stay home with me?  we could watch movies and play games."  And of course J said yes he wanted to stay home and watch movies and play games.  As I was on the fence about him being truly well enough to go to school, it did not bother me that he chose to stay home and give his body more time to recuperate.  But I WAS bothered by the way A addressed it with him.  Side note: when A does not feel well, it is expressed as though it is the end of the world, and work ethic goes right out the window at the first sniffle, and when A does work while under the weather, it is all anybody hears about, and I get so tired of the maurter routine. Right now it is true, A is quite sick with bronchitis and does need these days off from work, but that is not always the case. We all get sick, we all go to work sick sometimes, we all have days and weeks that our bodies are fighting some crappy cold, flu, bronchitis, etc...  But we don't all see the need to harp on it and be completely incapacitated by it, or to complain how incapacitated we are by it but still doing what needs to be done [can you tell I'd REALLY frustrated and at my wits end with this?]. 

I am trying to instill in my children a good school/work ethic, where if you are well enough to go, you go and do the best you can, but that it is okay to be sick and stay home and take care of yourself.  And part of that is recognizing when you THINK you might be alright but are not sure, and are willing to give it a try knowing you may have to leave early if it proves to be too much.  This is vital for J especially, as with CP he is more likely to get sick, and needs his sick days for the days that he truly can not work, and part of this process is for him to learn to read his own body, to know when he feel he can or cannot do what he needs to.  When I am feeling in the gray area for him, I always want to give him the choice, not based on what fun things he might get to do if he stays home, but based on how his body feels and whether he wants to try to have a regular day. 

And of course then G says "I want to stay home and watch movies and play games too"  To which I have to explain that J is staying home because he is sick not because he wants to do those other things (which makes me sound like a liar as A had just convinced J to stay home by telling what they could do rather than asking him about how he was feeling).  So then G starts rubbing his throat, and telling me he has a fever and all that (he did not have a fever, I checked to appease him).  Since I had already run down through the list of body ailments with him before  I had him get dressed, he had already told me that he felt fine (no sore throat, no head ache, no cough, etc....). 

It's just.......What a HORRIBLE example of school (and eventual work) ethic, to convince a child to stay home to watch movies instead of honoring his desire to try to go to school when we was in that questionable, in between health state.  (for the record, I actually AM glad that he is taking another day to recoup, as I don't like to push him too much.  My issue is the method and rational used  to override his original decision to try to go to school and to bring him that decision for himself).  And the effect on G is well, appalling, because now he knows that if he can PRETEND to be sick, he will get to stay home and watch movies and play games.  If I had not been insistent A probably would have kept him home "just to spend time with him". 

Since breaking up with A, G has missed only 2 days of school this school year (for illness, he has missed a couple for specialist doctor appointments) and J has only missed 5 days of school since September for illness.  Last year, when A was making the decision of whether to keep them home or not (as I went to work at 5:15am), they missed nearly that amount each MONTH.  But that is in the past, and I have to look towards the future.

If that had been the end of it, things would have been fine.   But on the drive here A called first just to say hi.  I asked how J was doing, and he was fine, coughing and sneezing some, but okay.  10 minutes later another call
A: "where is the fruit? I can't get him to eat anything." 
me: "canned fruit is in the cupboard, is he drinking?  when he is sick, if he doesn't want to eat its okay as long as he is drinking"
A: "yes he is drinking and he ate some of his cereal." 
me: "oh then he IS eating something?"
 A:"yeah" 
Me wondering what the call is about. Then a little more chit chat which was pointless enough that I don't remember it, and I really wanted to get off the call so that I can do my morning meditation and get centered to have a good, productive, positive day....

Then another call, 10 more minutes later:

 A:"he is sneezing a lot and has a clear and whitish snot." 
me:"oh, maybe his allergies are acting up." 
A:"no, its green snot" 
me:"I thought you just said it was clear and whitish"
A:"well whitish green"
me: "clear or milky usually indicates allergy, and milky yellow to green can indicate infection"
A: "its on the green side"
me: "well, call the health center when they open and see if you can get him in, because if he has a bacterial infection now on top of the virus he is getting over, then it will need to be treated."
A:" they don't open until 9, I can't call them now."
me:"oh, I though they opened at 8:30"
A: getting agitated "no, they never open before 9:00, I know I tried many times one day a few weeks ago!"
me: (I was getting a bit snippy because the conversation seemed to be futile, just call the damn doctor sometime today, I don't care what time the health center opens--that is what was running through my head, but what I said was:)"okay, I thought they opened at 7:30 a couple of days a week for blood work, but that's okay wait until 9:00, its not a big deal"

A: "why do you always do this, why do you treat me like I'm always wrong!?"
me: "I wasn't, I just thought they opened earlier, its not a big deal, you can call whenever you think they will be open."
A: "well, I feel like shit, I don't feel well and because I have been with J, I can't get ANY rest to feel better myself, so cut me some slack."
me:"I don't feel well either, so I am sorry if I seemed short to you, I was not trying to be.  You are not the only one that would like to rest.  My throat has been sore for days, I have had a cough for 5 days, and  my sinuses are clogged and painful.  And I had a fever last night.  So YOU are NOT the only one who doesn't feel well."
A: "well why didn't you tell me."
me:"I did say last night I had a sore throat and cough for 5 days and a ton of post nasal drip.  But I am not going to sit around and harp on it all day.  What good would that do?  I don't feel well, but that is not going to stop me from taking the kids to school or doing my work.  So why would I keep talking about it?"
A: "We could have helped each other if you would just open up to me, if you would just depend on me and let me take care of you."
me: "what do you  mean, we are helping each other--You're with J while he is sick and I take G to school.  its not about opening up, I mentioned it, and that was enough, there isn't anything you could do for me, you can't take away the virus or make the cough better, so I am not sure what you mean."
A: "that's right, I can never do ANYTHING right!?!  You don't NEED me, you've made that clear.  You never gave me a choice in the matter. There is someone else, I know there is!! I believe in the vows we took, but you never wanted to honor them, you just left, it was your choice  (screaming at me at this point)!!"
Me: "Goodbye A"

And I hung up.  I have learned that when A wants to go into a tirade about how horrible of a person I was because I left last year after A started drinking YET AGAIN, and a few months prior to that final relapse, we had discussed alcoholism (we discussed it many times, not just that once) and A had said that they boys should not have to experience growing up living with an active alcoholic as A's father had been a raging alcoholic and knows what hell it is.  So we agreed that if A started drinking again that A would leave so the kids did not have to experience more of what they lived from mid-2008 to December 2010.  To me, that was decided, and when A picked up the bottle again, the decision had already been made mutually, while we were both in a good frame of mind a few months before that event.  I did honor my vows, but I did not vow to be verbally and emotionally abused by a drunk or to subject my kids to the hell and chaos of living in a household with a verbally belligerent, irresponsible drunk.  I did not make any vows to the disease of alcoholism and I made it very clear in my vows that God and my relationship with God came first, follwoed by my relationship with A, and living with A while active in alcoholism has taken me so far away from my connectionw ith God, that it is nearly impossible for me to imagine how to reach back across that gap.  So I did honor my vows, but A can't see it.

We did have another conversation after that, in which A insists that I must be seeing someone and just can't accept that I really LIKE being single, I was single most of my adult life before meeting A and did not really mind it then either.  It is not that odd to like yourself enough to enjoy being single.  A did accuse me of bringing everything back to the disease.

 But it's not about the disease, it is about what I am willing to live with.  Why won't I get back together? Because since A moved closer it has become painfully obvious that we do not and are not at all ready to move forward in a helathy relationship.  I was willing to look at reconcilliation in December, but the first 3 weeks A was back in the area were pure hell.  Aand while it has improved, I am no longer interested AT ALL in trying to reconcile.  I AM interested in building a friendship, as there is a reason that I fell in love with A, A is an amazing person (most noticable when sober AND when not screaming at me about broken vows and how I ruined all of our lives by leaving (though point of fact A's life is the only one that went down after that, J G and I have been doing better (well G is having some trouble, but he always has)), and I enjoy A's company, and also we have 2 kids that we need to raise together, and that is much easier when you can be friends.  I actually love A, but i am not in live with A, and I can not enable A to live the kind of life where I am sucked dry and left gasping for breath, or where the kids are there to support and uphold A emotionally rather than the parent holding up the kids.  but A can't see it.  A is not a bad person at all.  A is actually a very good person with a very kind heart, but the tough skin, the anger, the bitterness, and the shame A carries gets in the way.

And I am understanding that.  This morning's reliving of hell made my heart ache and scream.  I have a big ball of anger, resentment, and maybe even hate sitting in my chest that has grown over the past few years.  I am working hard to get it to break apart and dissapate.  That is what this blog really is about, it is about getting through that block, shedding those unwanted pounds of negativity, and healing my heart so that I can reconnect with God and truly live a positive life of peace, love, joy, and giving.  So that my kids can live without the extreme stress that an unhealthy parental relationship brings to all of us, so they too can connect with God and live lives of joy, peace, and faith.  So that A can let go and move forward without feeling the need to be with me. 

You know that song that goes "how can we be lovers if we can't be friends? how can we start over if the fighting never ends?"  that is exactly what I feel in thsi situation.  If A is not able to let go enough to try to build a real, solid, true friendship, what on earth makes A think that getting back together would work?  Your spouse or partner should be your best friend, and it needs to flow from a deep, heartfelt, lasting friendship, upon which a romantic relationship can then be built. I do not think at this point that this relationship will reach the point of even considering to build a romantic side again, but I truly, deeply desire a solid mutally respectful friendship, and I don't give up easily. What the past few months have taught me is that it is going to take a long time (probably years) and a lot of healing and regrowth in order for A and I to have a deep friendship that bring us both honor and respect.

I could not do my mediation this morning, too much negative crap was in the way for me to be able to focus.  And it is a good thing money is tight at this second (come on tax return, get here) as I could not go be a glutton to try to bury these negative and painful feelings (the oatmeal with vanilla lowfat yogurt and diced peaches I brought had to suffice (oh and I did scrap together enough change to buy a cup of coffee, as I forgot to bring tea this morning)).  By not burying them under food, I was able to blog about them and have the cathartic realease that I needed.  Oddly, I do feel better, calmer,  Like squeasing puss from a pressure filled wound (gross I know) it feels better.  It still hurts, the wound is still there, but maybe it is not festering as much.  The pressure has been realeased and some of the junk squeezed out, and now my body (and mind and spirit) can work better on elimiating the infection and bringing healing.  I am sure A would hate the fact that I am writing this, but I need to express and tell of my expereinces, and A is part of my experience. Part of the journey of my life.  Now I think I can get down to doing some work....

Thank you for being part of my blogging life....leave a comment and let me know you are here...