"You didn't give me these arms, but you gave them a family to hold.
You didn't give me my body but you've truly shaped my soul. Your love has given me wings and how my spirit soars. Knowing that I always will be yours. Forever and for always I am yours."

Thursday, April 12, 2012

Going from unknowns to knowns then more unknowns

The girls are spending their first day at school!  What a significant day in their lives.  Jaeya has had such fear of the big unknown entity called SCHOOL.  Her whole life she was told she couldn't go to school because she would break her bones.  She begged me not to make her ever go to school because she would break.  The fear of this unknown was beginning to consume her.  I knew we needed to conquer it before it ate her up.

So, I told Miss Jaeya that she was going with me to take Meisyn to school yesterday to give them the enrollment papers and visit Meisyn's teacher.  Jaeya made sure I knew she was NOT going to school herself or would end up broken in half.  (This gesture of breaking in half was very clear!)  I wish I had a video of her and Meisyn as they entered the school.  Their eyes about bulged out of their heads.  This place looked FUN not scary.  Jaeya would look around and repeat in an unbelieving voice, "School?"  I would nod my head and ensure her that indeed this was school.

As you can likely guess, we did end up visiting both Meisyn and Jaeya's classes and the girls did not want to leave.  We had to leave for the doctor during the middle of Jaeya's music class where they were listening to Stravinsky and making a huge firebird.

Today the girls were up at 6 am and counting each minute until they got to go.  Jaeya only teared up and mentioned China ONE time last night.  HUGE PROGRESS.  Meisyn is in the kindergarten so doesn't go until noon.  Big bummer.  But I took Jaeya as Lan and Caden escorted her to her classroom filled with classmates that treat her like a diva.  Uh, no better way to delight Jaeya.  They may regret that at some point, LOL!  With a big smile on her face she motioned me to leave so I did.  My kids are in a Montessori school so Lan, Caden and Jaeya are in the same class.  That really helped.

At noon I took Meisyn to her class where she was enthralled by the teacher who sat with her and helped her with letters and sounds.  She was in heaven.  I then peeked in on Jaeya and when she saw me she broke into a great grin....and then sudden anxiety.  She quickly said, "No school all done!"  I assured her that school was not done.  I was just visiting after dropping off Meisyn.

My dear friends.  This adoption stuff is hard.  It is so exhausting financially, emotionally, and particularly in my case physically as I have to carry my girls everywhere.  I am so grateful for children who can just get to and sit on the toilet themselves.  That is a blessing we don't have with Jaeya and Meisyn.  Seeing my daughters as they embarked upon their first day at a real school made every single annoyance and hardship appreciated. Giving them the chance to go to school like other children is priceless. Just this one day has made everything worth the work and the worry.

I need to share about our visit to the doctor.  Dr. Bunker has been with us through some scary things with the kids and with my near death experience.  He is able to be frank and open with me about things that aren't pleasant to think about.

I put Meisyn on the exam table and showed him her floppy body and the big scoliosis and kyphosis of her back.  At adoption we knew she didn't walk and that she had been diagnosed with bilateral hip dysplasia and rickets.  There is so much more than this I fear.  I told him I prayed he would tell me he thinks Meisyn has had polio.  I don't want it to be the alternative that I am suspecting it may be.  He just gave me a sympathetic look and replied that he was too young to know much about polio although it may be.  The doctor has never seen such a floppy child such as her in his 20 year practice.  Her legs can be contorted to put her feet behind her neck.  Dr. Bunker requested an emergency referral to the neurology department at Primary Children's Medical Center.  These are Ammie's docs.   It is very possible that our dear, amazing, gentle, smart Meisyn has some form of muscular dystrophy as she has severe neuro-muscular dysplasias.  All forms of MD are inevitably terminal.  We know that Ammie may leave us too soon but his will be a sudden leaving.  A seizure will come that sends him into cardiac arrest.  With MD we would have to watch Meisyn waste away until she could no longer breath on her own.

I am waiting for the neurology department to call with an appointment time.  I'm trying not to get ahead of myself and worry until we know for sure but I know my doctor well and could tell he was worried.  However,  I can say with complete confidence and assurance that our Meisyn is a blessing and we are privileged to have her in our forever family.  No matter what happens and how long she has to be on this earth she will LIVE a full life.  Should she leave us far too soon everything we have done to bring her into our family will be worth it. We are completely smitten with our Meisyn.


  1. Stef ... I'm not MD expert, but here is a quote from the National Library of Medicine page on MD: "Some types of muscular dystrophy, such as Duchenne muscular dystrophy, are deadly. Other types cause little disability and people with them have a normal lifespan." Lots of hope, in that statement, even if it is MD and I know its not the life you hoped, but Stephen Hawking has tremendously impacted society forever, despite his physical limitations due to MD. Best of all, you all will bring great joy to Meisyn and her to you, no matter what ... how fantastic is that? -- Amy K.

  2. Praying! Let us know as soon as you have the appointment.

    And what a beautiful first day of school!!! :):)

  3. Oh how sweet they went to school!! They seem like wonderful little girls.

  4. Oh what fun to see pictures of your beautiful girls, and in school! What joy on their faces.

    I just discovered that you've been updating your blog (actually Meikiina did) so will have fun going back and reliving parts of my trip through your blog.

  5. Stefani,
    I just cried as I read your post. I am praying for Meisyn and Jaeya. We go to Primary Children's also, to the spina bifida clinic. KaiLi receives such wonderful care there. Don't you just feel reassured by their knowledge and their care for the kids? Just know that my family's prayers will be with you.
    Teri W.

  6. You made school look so fun that even I want to go! I wish we had a Montessori school here. Your kids are so lucky to have you for their forever-mama; for however long they have in this life they will have love and joy and hope because of you. Because of my own 'aching back' I've wondered how hard it will be for you to manage the added physical burden of lifting and carrying little ones who can't do it for themselves. My prayers are with you Stefani that the Lord will ease your load. You are such an example to not only your children but everyone who watches you. You make me want to be a better person; you show me that more can always be done to serve. Thanks for sharing your blog/life with us.

  7. My thoughts and prayers are with you and ALL the family. It's good that the girls are in a great school. Hopefully you will have peace through all the doctor appointments. Please call if you need anything. I am here.


  8. HI, Beautiful Family! A friend forwarded me your blog. We adopted our 10 year old daughter in November from China and she was just diagnosed last month with Collagen 6 Muscular Dystrophy. She is in a wheelchair but loving life and doing soooo well in school. We are preparing for scoliosis surgery this summer. Would love to chat sometime if yo would like.
    our blog is www.pathsofjoy.blogspot.com
    Prayers your way!