Why June 30th, 2014 means so much to this family...

(Micah: Once again, to finish out the week of Jael, the lovely Rachel will tell the story of the little girl who has stolen our hearts and made sure that no matter where we go, we won't be without medical insurance.  L'chaim! To Jael!)

 Rachel:  To be honest, June 30th has been a fairly unremarkable day for us in the past. I actually don't remember much from the previous halfway points of the year. But in 2014, June 30th means a wee bit more to our little family -- and it all begins with a story (surprise!). This is Jael's story.

"The Lord himself goes before you and will be with you, he will never leave you nor forsake you. Do not be afraid, do not be discouraged." 

Deuteronomy 31:8 (NIV)

     The idea of having a c-section terrified me. The separation right after birth, the lack of control, four days in the hospital away from the boys, the two weeks of not being able to drive, even the six weeks not being able to lift my two year old all haunted me (It's kind of funny now how unimportant all these worries became)! In the days leading up to the c-section, I found this Deuteronomy verse listed above comforting to my soul -- and after the introduction of Jael into our lives, it became a sort of theme verse for me.

   Jael is one incredible little girl. There is so much about her life that is a miracle that it's clear how God's hand has been upon her. Not only was she born into a family with two big brothers to contend with, but she was also born with something else -- arthrogryposis multiplex congenita (AMC for short). Amidst the story you've heard over the past few days of me going into shock and, subsequently, the ICU, we didn't really get to meet Jael until day two of her life -- a day that quickly moved us past the close shave I had and into a different world entirely.  

(As it so happens, June 30th is Arthrogryposis Awareness Day, which is why it's so near and dear to our hearts now.  For even more accurate info, click this link, which has a lot of easy-to-understand thoughts that would have been nice to know when we were trying to get up to speed :  http://amcsupport.org/awarenessday.html  )

So Arthrogyposis Multiplex Congenita is a very rare joint and muscle disorder -- the kind Jael has happens one in every 10,000 births.  Basically, Jael's joints didn't form correctly while in utero, so they have very restricted function. (You'll see that in many of her early pictures, this shows up as her looking very stiff or rigid) This disorder affects each person differently, and there are over 400 causes, and in many cases the cause is never determined. Jael's particular arthrogryposis affects her shoulders, elbows, wrists, thumbs, knees and ankles.

Meanwhile, back on the day after Jael was born, there we were -- meeting our sweet baby girl, googling arthrogryposis to figure out what exactly the doctors thought she might have, and trying (on the fly) to alter our lifestyle and life expectations for our baby girl. Actually, I sorta freaked out and called Micah, who was with the boys. He was very unconcerned. "Is she dying?" he asked. "Well, no." I said. "But this is still a big deal. You need to google it." (by the way- I do NOT recommend googling it. If you want some good information about it try amcsupport.org or the link above).

On our last day of our hospital stay (two days after we found out about her condition) , we had this really cool consult via satellite between us at the Beverly Hospital and a geneticist at Boston Children's Hospital. It was almost out of a futuristic movie -- with the doctor on a screen with a robotic body. At one point, the doctor wanted to see us better and tried to move the robot forward but accidentally moved it left. It was a much-needed moment of humor.

That next day, my mother-in-law took the boys, my mom took Jael, and I sat solo in the quietest place in the house (the basement) and called a variety of specialists, early intervention, masshealth, etc. for two straight hours. Every time someone asked me to spell arthrogryposis, I would have to google it (the spell check in Word does not recognize it as a word). When we had for our first early intervention evaluation and our therapist knew how to spell it, I almost cried! Finally, someone who was familiar with this!

 

And so we began a very different role of parenting a medically complex child. Our rather simple life was suddenly filled with specialist appointments (I think we are up to seven specialists who follow her routinely), weekly early intervention visits, daily physical therapy, MRI's, ultrasounds, x-rays, second opinions, surgeries, and a great unknown future.

                                               (Here we are doing physical therapy with her)

But God is good. So so good. We have learned so much these last nine months about his goodness to us. We see little miracles all the time in everything Jael does. Her first smile- miracle. Rolling over by four months- miracle. Sitting up by six months- miracle. The tiniest little bend in her left arm while she's laying down- miracle. Her little giggle or watching her face light up when she sees her brothers- there's nothing like it. He has surrounded us with such an amazing support system in our family, our church, and our friends -- all who recognize that this is our new life and love us for who we are and what we can offer in this new adventure.

We are excited to see Jael continue to learn how to move and see how she figures out how to do things. It'll look different from the way we do it, but she'll do it! And we will continue to be blessed and thankful that God added Jael to our little family as we get to watch her grow and be a part of her precious life.

Isaiah 40:28-29

New International Version (NIV)

28 Do you not know?
    Have you not heard?
The Lord is the everlasting God,
    the Creator of the ends of the earth.
He will not grow tired or weary,
    and his understanding no one can fathom.
29 He gives strength to the weary
    and increases the power of the weak.