It’s getting harder to write as our story is growing. I am constantly afraid… afraid of complaining too much or putting on a mask. So much has happened these past weeks and months and there is still so much to process and feel and think, and yet life is being lived. I don’t want to be fake with people, nor do I want to dwell in my emotion. Its quite the dance isn’t it?
We went camping this past weekend 🙂 it was glorious for everyone but jack… he didnt like it 😦 I think it was primarily his age… he looked at me as if he was asking, “where is my bed? where are my toys….?” Friday night he slept terribly as I expected. At 3 am I drove him in the car to catch some last zz’s… Saturday night is what makes memories my friends…
Saturday night at 12 am Jack started having a hard time breathing so I pulled him in to my sleeping bag hoping he was just cold. Then at 2 am Seth got up with him to drive him around. He was coughing pretty bad now… My mom actually woke up by it thinking that it was an animal outside!
I had always wondered when you knew you were supposed to bring your child to the ER… when were they sick enough to justify the trip?
Answer: when you’re camping and your child cant breathe… or when your mom tells you, “you need to bring him to the ER for a breathing treatment and medicine.”
So thats what we did. We drove an hour in the middle of the night… 2 hours there with fabulous nurses and a doctor in training.
We asked the head doctor if it was the cold or the campfire or some allergy or asthmatic attack… she kindly responded….
“No, it wasn’t the cold…. it’s because he is in the world…”
And that’s when it hit me…
All of this that I have been experiencing this year… its because we are in the world!
The heartache, the questions, the desires for wholeness, and joy, and love, and to be known and understood, and to understand others and everything…. So many good meaning people try to affirm me that Jack is perfect… or that he will be “okay”. Neither of these are correct my friends… Jack is an absolute doll who I am wholeheartedly grateful for… but he is not perfect. In fact, he is perhaps my reminder that there is more that lies under the surface. Jack needs more than fingers and toes… he needs someone to redeem him from this broken and hurting world.
I have been seeing glimpses of Jack… behind the syndrome…
I feel like apert is Jack’s mask… it is not his identity.
My prayer for jack is that he will overcome! That he will be more than a conqueror…. through Christ who strengthens him…
For now we see in a mirror, dimly, but then face to face. Now I know in part, but then I shall know just as I also am known.
Our new piece of furniture is this ancient stander. Since Jack doesn’t put any weight into his legs, his hips are very tight and to protect them we strap him into this to work on trunk control and strength. He doesn’t put direct weight into his arms with his shoulder blades rotated the wrong way so this allows him to work on standing and “tummy time” without having to push through his arms. He doesn’t like it much… but he does like being able to look out the window!
This is Jack and his cousin Kate… Despite everything, Jack is growing up! He adores his cousins and anyone that will read to him 🙂
We are blessed beyond words to have Lucy in our every day… She brings light and life and laughter and beauty to my otherwise monotonous days.
Jack is such a lover boy 🙂 he wants to cuddle and play every moment of every day. I long for the days where he will run and jump with the other kids… but for now I get him all to myself 🙂
We were so encouraged by our church family who came out and helped us move our life north where we are closer to therapy and work!
these two kids absolutely adore each other…
Things coming up:
- Tomorrow he gets his leg braces (or AFO’s “ankle/foot orthotics”) which will hopefully give him a flat surface to stand on since his arches are backwards and he has an extra foot bone in each foot… (yes, he would have had 6 toes if he wouldn’t have had them all fused together! I already miss his cute elf feet! haha)
- MRI on october 29th to check on the hydrocephalus.
- 2nd out of 3 hand surgery on october 31st where they will be releasing the ring fingers, enlarging the webspace of his thumbs so he will be able to pinch better, and releasing the rest of his toes
- He will be getting glasses sometime this year to help with his right eye
- Sleep study in December to follow up with his sleep apnea
- Whatever else the jackman deems appropriate as he reveals the mysteries within 🙂
Please pray with us:
– that Jack would stay healthy these next few weeks so we can stay on schedule for the surgery
– for travel mercies as I take Jack to Boston myself this time
– for Lucy mostly as we settle in to our new home
Thank you friends! I feel so raw… but so cared for knowing that you care and support us as we seek to honor God in everything we do…