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.

Thinking....part 2....

Well, it seems weird to call it thinking part two (as when do we even NOT think) but to keep it consistent as it is really the extension of yesterday's post, I figured it was best to do that...

So, where was I...oh yes, so we decide that both emotionally and financially pushing forward with the international adoption was not something we were able to do at the time, we turned our focus to adopting a child from the US foster care system.  We got our homestudy revamped for that focus, and began inquiring on children that were available that we felt would be a good match for our family.  We sent out over 60 inquiries.  We heard back from only about 15 (which is really incredibly high, as usually you don't even get any word, so to even hear back from 25% is huge.  Most we were told either were already in a matching process, or that we were not a fit for their criteria.  There were a couple that were interested in seeing our family profile and pictures.

...sorry for the interrupted story, I'll have to finish later, I just wanted you all to know that I did write a bit today...time is moving too fast some days.

Thinking........always a dangerous activity....part 1....

I think I wrote a while back about the analogy I had heard of going from say Las Vegas to Los Angeles and how even if you did not know the exact route, if you knew the basic direction, and you keep going in that direction, then you will eventually get there.  The second portion of that analogy is that if you set out in that direction, and then change your mind and start heading in another direction, and then change your mind and start heading back, and so on, you could essentially be lost forever, turning in circles and never actually getting anywhere.  To way to get somewhere is to keep heading in that general direction.  It is sticking with a single decision that keeps a person moving in the chosen direction, and making each decision based on that initial decision.  If you always override your past decision in favor of a new one, you end up floundering in the wilderness, unsure of exactly where you are, how you got there, or where you are going. 

So, you may be wondering why I am thinking about that...well, I have had many pockets in my life of that aimless wandering without a real goal in mind.  I have never really liked those times.  And I feel like I am in one at this point, and have been for a couple of years.  So I am going to try to put some of my mental meanderings into words.

In 2003, I spent 7 months (May 1 to a few days before Thanksgiving) volunteering as in many ways an interim research director at ECHO (www.echonet.org) in North Fort Myers, FL.  Their research director was leaving to move back to Canada in June and his replacement research director was not able to be there until October.  So they needed someone to learn what research was going on, and to keep it moving forward, to be able to bring the new director up to speed.  That way there would be no break in the research, no stopping and starting.  It was an amazing experience.  ECHO is an amazing organization, an amazing blend of science and spirituality.  Living with others of like mind, working side by side with people dedicated to "...using science and technology to help the poor..." which was the core of the mission statement when I was there.  The revised mission statement is "ECHO's Mission is to equip people with resources and skills to reduce hunger and improve the lives of the poor. "

It was the most fulfilling 7 months of my life.  But volunteering full time is a not an easy to sustain lifestyle, as income is a necessary part of our culture.  But I felt very honored to have the support, financial, emotional, and prayerful, of all of the people who helped me be able to do that work.  As I was nearing the end of my time at ECHO, I was trying to decide what to do next, what my next step would be. 

I am a very visual thinker (I tend to think in concepts and visuals).  As I was meditating on my path, the visual that came to me was like standing in a clearing in a forest.  It was a small, sunny beautiful clearing, surrounded by a fence with many gates.  From the clearing, like spokes of a wheel were many paths going in many different directions.  All looked inviting, all looked clear, but I could not see more than a few paces down any path.  I had a sense that I could choose any one of the gates, and by opening one the others would be locked.  It was a pivotal decision making time, but I had no idea where any of those gates would lead.  I try not to waste my time wondering how my life would have been if I had chosen a different path.  At the time, there were some easy to see paths from the point that I was at, but with each one there were so many unknowns.  I chose to return to Ithaca at that time, to return to the career field where I had the most training and experience (at that time plant genomics).  And to return to where I had my church,friends, family, and other known  entities.  In short, it was the least risk path.  I knew it when I chose it, I knew it was the path of least risk.  I also knew it was not the most potentially fulfilling of the paths that lay before me, both of the ones I could see the next steps in or the ones that were just a vague idea.

I returned to Ithaca, got a position working in agriculture at Cornell again, and decided to settle in to work towards another dream of mine--adopting children with special needs.  So I bought a house, and then I met A.  I really had never had a spousal type relationship, so this was a new experience.  I put my adoption plans on hold, and developed a relationship with A.  We had a ceremony solidifying our commitment a year later, and revived the mutually agreed upon path to adoption, with somewhat different parameters than I originally planned, as I was planning on foster to adopt, knowing that most foster children return to their parents (which is normally a very good thing).  So I was prepared to be a safe haven and support for children whose home lives had become unsafe, and to help them while their parents found stable ground.  But A felt that getting attached and losing them was more than A could handle.  So we chose to do straight adoption, looking at children internationally, kids who were already freed for adoption in foster care, and private agencies.   We began the path to adopt a beautiful boy named Rustam from Russia.  He is and always will be the first son of my heart.


Rustam still resides in a place in my heart, and will always be there.  He was my one armed bandit.  He had hanhart syndrome. The amazing child with only one arm, and completely fused finger on the good arm, as well as fused toes, and some heart and kidney issues.  We had a couple of videos of this amazing child.  He was so smart and capable.  He could use his little lobster hand so well, and loved playing ball, running around, and just being a kid.  You could tell from the videos that he was a strong willed little guy, interested in exploring his world, and willing to exert his own control over his life.  He probably would have been a challenge to parent, but strong willed children usually become successful leaders as adults if their strength can be channeled properly.  So are very worth the challenge.


For a few months, we focused on talking to specialists about his issues, preparing his bedroom, and we even had the chance to send some things to him with another family who was adopting a child from that orphanage.  We had completed all of the paperwork, gotten all of the clearances, and had been raising the money for the travel expenses.  We were awaiting a travel date for the first trip to go to Russia and meet him, sign the first round of papers, have court, etc....  Then we got the call that another family in Russia had committed to adopting him.  That is the risk of international adoption.  IF a family there chooses a child they take precedence over someone who has not yet been there.  So he was no longer available...We were broken hearted, but were bolstered by the fact that he would have a family, a mom to tuck him in and give him kisses. 

We grieved but decided to continue with our plans to adopt internationally and selected two little guys from a different section of Russia--one who had been a preemie and one who had some issues with his hips and leg length.  We redid our paperwork  for the new region and began preparing for the adoption of Kostya and Andre.  My dad got his passport so that he could be an extra set of hands during the process and the travel to bring the boys home.  We altered the kids room (added a crib for little Kostya), and began getting toys that were appropriate for a slightly older child than we had planned on as Andre was 4.  While we still grieved the loss of Rustam as our son, we were committed to bringing home these two little ones.  As our original home study and immigration clearances were for up to two children, those did not have to be redone.  So paperwork did not take too long to redo.  A couple of months later, as we awaited a travel date, we got another call of bad news.  Andre had been taken into foster care in Russia and the family wanted to keep him and someone had stepped forward from Russia to adopt Kostya.  So another major loss.  It was like getting hit with a shot gun blast, as my heart was still an open sore from losing Rustam. 

But we were firm in our commitment to give a child with special needs from Russia, as children with special needs are placed in mental institutions at age 5 and are not available for adoption after that.  They live out their lives, like the US used to treat people with disabilities--hidden away from sight, treated poorly due to the belief that they are essentially of lesser value than "regular" human beings.  Not given the chance to grow, learn, and become productive members of society.  So, we lifted up our broken hearts, and committed one more time, to a little boy who was in yet another region of Russia.  As many of our clearances had expired we used a sizable portion of our saved funds (which had been dipped into for the second attempt) to redo all of our paperwork for yet another region.  This time we were hoping to bring home Kirril (whom were were going to rename Korey).  He had hydrocephalus and possible mild CP. 

We did not prepare for him.  We were too gun shy and our hearts were broken.  We spent a month doing things, only to learn that our funds were too depleted to have enough for the first trip.  We decided after a few weeks, that we were in no condition to weather another loss, and we now needed more time to raise more money.  We had already lost over $8,000 to the process of international adoption, most of which was spend on all of the document preparation, getting the right seals and stamps, translation, and then redoing it a couple more times.  So we regretfully stepped back from Kirril, something that makes me sad to this day, as I followed his picture for a long time, and learned that even though a couple of families traveled to meet him, both families turned him down.  He most likely ended up in a mental institution when he turn 5.  Having been hurt by the losses so many times and lost so much money, we decided to concentrate on  adopting from the US. 

I will have to continue this story tomorrow.  my little man J had aquatic PT today and it is tiem for me to head over to school to pick him up for that....

Attempting to use mobile posting.

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 81--Still breathing...

So, today was originally the day by which I had planned to move much closer to my weight loss goal, but alas, it is a slower process.  There is much that I started out with doing correctly, that I was unable to create a good habit with.  And many other things that I have done well that are improving my life as a whole:

WALKING:  I am walking 1-2 miles almost every weekday, which is a huge plus all around.  It helps keep the muscles in my legs feeling good, it helps strengthen my heart and lungs, it releases tension throughout my body, it uses some of my excess stored energy, it helps my body be better at using insulin, and it helps me clear my mind and have a stronger sense of peace. 

BETTER FOOD CHOICES: I have cut out a significant portion of fast food from my weekly diet.  For a while I was having a McD meal at least 4-5 times a week (not good health wise or $$ wise). And now I only go to the golden arches about once a month.  I have been eating more yogurt and oatmeal, and less sausage egg and Cheese sandwiches.  I still need to continue this transition, but it is in a good progress.  I'd say I am past the half and half mark, so the oatmeal/yogurt or small bagel/yogurt is beginning to be predominate.  I am much more likely to be eating turkey on WW with a piece of fruit or a V8 for lunch instead of greasy burgers and fries (which also helps in the $$ department as it is so much easier to bring my lunch).  I am getting 5-7 servings of fruits and vegetables everyday.  I am drinking at least 10 cups of water every day.

FEELING BETTER:  I am feeling better--about myself, my body, my life, and my overall situation.  Even though there are still many things not where I would like them to be, the past 80 days of focusing on transformation have been very beneficial on my perspective.  I may not have lost 80 pounds in 80 days.  But I am 20 pounds lighter than when I started this journey, but more that the 20 pounds, I feel better about my body.  I have more energy than I did, I mentally feel more lovable and real again, and overall, I appreciate all of the amazing things that my body does.  I have even been taking steps to take better care of my self inside and out.  I got contacts again which I wear about 1/2 the time, and I feel better when I do because I love my eyes, and I appreciate them.  I got my hair cut into a totally different style last week, and I love it because it is fresh and new, not the same style I have had most of my life (I mean seriously, I have had the same hairstyle (a bob) 90% of the time since I was 5 years old  with only short jumps into other styles, so this hair cut is new for me).

BETTER FRUIT:  I am bearing better fruit now than I was 80 days ago.  My children are happier and more at peace because I am happier and  more at peace (it is amazing how that works).  I am applying for real jobs again, and have regained the confidence that I need to trust myself to be able to have a real, full time, higher paying, more responsibility laden job again.  And not only applying, but actually looking forward to working and having colleagues again.  I trust that my kids will be okay without me having to 100% available for them at all times. My faith is increasing, and my desire to really rebuild my relationship with my God is growing.  So much as happened over the past few years, and I feel like I have been walking around in the dark, bumping into things, and now I feel like I have found the light switch.  My exploration of God and different spiritual and philosophical paths are coming back into an actual way of life again, rather than just something to study.  I am more at peace, more joyful, more faithful, more patient, more kind, more loving, and have more self control.  I am working towards being a good person in my daily walk, and re-developing the gentleness that I used to have in abundance.  I feel like a tree that had been going barren for a while, but now those fruits are beginning to grow again, slowly but surely.  And I have gotten into a better mental, emotional, physical,and spiritual place from which I can tend my tree of life so that it can bear strong, wholesome fruit.  I can feel God again, not just knowing in my head, but knowing in my heart.

There are still may things I need to work on.

For the weight loss, I need to continue to change my habits from eating unhealthy things to eating healthy ones.  I need to take on and tackle the problems I have with portion control, as that is probably one of the biggest culprits in my weight battle. I need to work on the timing of my eating as well. I need to continue to increase my physical activity levels, and add in some more muscle building and aerobic work.

For my financial health, I need to continue to find income generating opportunities, and hopefully one of the jobs that I have interviewed for will turn into a job.  I also need to continue to make good financial decisions, and not let myself get swayed by others or by wants that are not needs, or wants that are not practical at the moment (I have no problem with wanting and getting what you want, but it has to be within reason given current situations).

For spiritual health, I will continue my studies and exploration of what others have found helpful and will continue to incorporate various spiritual practices into my daily life, keeping what brings me closer to God and leaving behind those which are not right for me. 

For mental/emotional health, I will get back to my exploration of EFT and other tapping techniques, as they are extremely helpful in reducing stress and overcoming emotional blocks.  Also, i will return to my commitment to do meditation on a daily basis, and would like to incorporate some movement and sound based techniques that I have heard are very centering.

So I hope you will continue to follow me on my next 80 days of transformative path walking.  Yes I often take baby steps, and sometimes even take a coupe of steps int eh wrong direction, but overall, it is an amazing journey (at least for me).