Wednesday, May 7, 2008

Why Special Needs??

    When Paul and I started this process, we requested a NSN (non-special needs) girl, as young as possible. However, if you know anything about China and adoption, then you know that the adoption line has turned into a virtual parking lot. In June, it will be 2 years since we logged in and 2 1/2 years since we started the process. If we would have continued to wait for NSN, we could be waiting an additional 2 years. When we started the process, we were told it would take 6-9 months.


   Every week, our agency gives an update. One week, when discussing the wait, they suggested everyone consider the special needs children. Much earlier in the process, when I first learned about the "waiting children", my first reaction was there is no way we could care for a child with medical disabilities , nor afford the expenses. I just assumed that they were children with too many needs for us to handle as well as our other children. But after some very time consuming seraching, I quickly learned that these kids are "normal." Most of the waiting children are healthy, but may have some type of medical issue that is correctable. The more I learned about these kids, the more I realized this was something our famly could handle. Because of our children, there were some needs that we knew we could not handle, but many of the needs seemed very manageable. There are several thousands of children on the "waiting children" list with many minor needs, and some with more complicated problems. But because they are considered imperfect, they are harder to place. After deliberating for several days and contacting several families who have personally dealt with the same special need as Mylei, we decided to move forward.

      Mylei has a form of spina bifida called meningocele.  This means that she has a hole/cleft in her vertebrae that allowed the spinal fluid to leak through forming a sac on her back. (More about this later.)  The "sac" should not have contained the spinal cord itself or the nerves.  This means damage for her should be minimal.  

     The ironic part of the story and how God works - I don't think I would have considered her had I really understood the wording on her diagnosis.

    To get to that,  I'll have to explain a bit about the waiting children program and how it works.  When considering the program, the first thing one has to do it fill out a checklist of things they would be willing to consider.  To be honest, I am pretty sure I checked "no" for spina bifida.  I always thought this was the kiss of death and that the children were immobile and wheelchair bound, etc...  Anyway, when the agency gets a list of special needs children, they look at the checklist and match them with families and the needs they said they would consider.  So, the line starts again for this list.  We would have been family #4o meaning there were 39 people in front of us who would have to be matched before us.  They get 3 or 4 lists a year, so who knows how long this would have taken.  The other option, which is a new option, is a shared list.  This lists is available to,  I believe about 50 other agencies.  So, at the same time, people from other agencies could be looking at the same child.

     I had been looking at the list for several weeks.  While looking at the list one day, it really hit me.  These are little human beings, little lives.  Every day I am passing them over because they have too many problems or they are not cute enough.  I felt like a horrible, shallow person.  I called to talk to the director of special needs about my feelings.  She explained that just because I am passing them by does not mean that other families are doing the same.  She assured me that they would all find families.  She went on to say that one just has to really go with their gut.  I felt a bit better.  I continued to ask her a few questions.

     I asked her how often files come in for the shared list.  She said since it was new that there wasn't a pattern, several had come in since the beginning of the year.  "As a matter of fact," she said, " we may even have some later today or tomorrow."

     Since I had been pouring over the lists, I knew all 75 names and would recognize any additions.  The only problem was that this day was Thursday and on Thursday I tutor from 2:30-3:30.  I looked at the list right before I left- nothing new.  I left tutoring right at 3:30 and flew home and started looking at the list.

     That's when I saw her, a new name. Li Na.  I clicked on her name to look at her picture and her diagnosis.  Immediately, I thought she was so cute.  Her diagnosis was congenital lumber vertebrae cleft.  Paul was looking at the list on a separate computer.  So, I showed him her picture and asked him, "WHAT THE HECK IS CONGENITAL LUMBAR VERTEBRAE CLEFT."  Of course he didn't know, so I said, "I don't care I am asking for her file!"   Once you have a file, it is ok to say 'no', but it is so hard to get a file.  So, I sent an email to the lady at my agency asking her to lock in on her file.  That is the only way to be able to consider a child on the shared list.  You have to be the first one to lock in on her file.  Then, you have 48 hours to speak to an international medical specialist and make a decision.  At the 48 hour mark, the file unlocks.  At that point, it can be locked again, but the agency has to get to it before another agency.  Our file did unlock once and was able to be locked again.

     The 48, or 96, hours were stressful, don't get me wrong.  We paid $480 for an international specialist to look at her file and review it.  Paul left and went to Colorado with the tennis team for UD (he's the chaplain).  So, I was alone researching like mad, talking to other families with children from China with spina bifida (even one family who told me to call them while they were on vacation in Hawaii), praying, etc...  By the time I had to make the decision, I had a lot of peace!  At one point I thought, "Who am I to hold out for another healthy child?  I have 3 (praise God) healthy children.  Adoption is the only way some will get a child.  They deserve the healthy ones!"  And, I just knew I was making the right decision.

    Back to Mylei's condition... Meningocele is a less severe form of spina bifida.  But, we have to prepare for the worst and hope for the best.  The worst being some paralysis, bowel and bladder incontinence, and numbness.  Right now, according to the last report, she is running and hopping!  That is a good sign!

     It will be interesting to get her home to a doctor.  Remember the international specialist I paid $480 to speak with???  The first thing she asked me was, "Has she had surgery yet?"  I wanted to scream, "WHAT IN THE HECK ARE WE PAYING YOU FOR!!??  We have pictures of her back and it is odd.  There is not a sac.  It also doesn't appear she has had surgery because there is no evidence of a closed wound.  You know, a scar with a long line and little lines running the opposite direction.  Her back, way down by her bottom, has a discolored indentation.  It almost leads me to believe she has spina bifida occulta.  This is the most mild form.  40% of the population has it and most don't even know it.  It is sometimes marked by an indentation, a birthmark, a discoloration, a patch of hair, etc...  Who knows!  Her back just does not look like any of the other children's back I have seen with the sac and all.

     We did not set out on this journey as a rescue mission. However, that is exactly what we have done.  We are rescuing a beautiful little girl from the possibility of growing up in an institution without ever truly knowing what love is. Yes, there is the possibility that she may not walk "normal", or that she may need more procedures, but more importantly, she will grow up with the love and safety of a family that will be her "forever family." I also hope that our children will learn that every child, regardless of medical dissabillities, or special needs,  are just as deserving of love as a "normal" child.  This rescue mission is really not about us, please don't applaud us or think highly of us.  We are humbled knowing that we really did not chose her.  We'd like to think that God has enough faith and assurance in us, that He chose us to be her "forever family",  I have a feeling she will bless us much more than we will bless her.

~Author ~


cherryt7 said...

I am so excited for your news of this past week! I meant to comment the other day and I was having a brain lapse on how to sign in and comment, duh! Anyways, congratulations and she's beautiful!

Josh said...

Hi April!

I just read through your posts - I'm so glad you're blogging about your journey! I've been following the adoption stories of several friends, and it's really exciting and a challenge to me!

China is especially on Josh and my hearts, and we've considered the possibility of adopting some day down the road. Who knows!

Anyway, just wanted to say hi. :O)
Rachel (Wiley) Destree

Tony and Rett said...

Our kiddo had a medical need that we also checked "No" to on the questionnaire. However, I would not be complete without her! (And her sister!!!) Thank goodness God knows what He's doing!