Day 42

You could probably title our day today as “Transition Day” for the family. Justus continued to show improvement. He keeps getting stronger and stronger. But for the family, today marks some significant transitions. First, this morning was the first morning in 42 mornings where Justus woke up without his parents in the room. That’s right, last night we kicked the parentals out of the room and sent them to a hotel room graciously donated by some dear friends. Tonight for the first time, the parents will sleep in the room with him, but for six hours there will be no family member watching him as he sleeps! And perhaps the hardest transition for me, today I officially began the transition back to Lakewood. I’m back home and will stay here through the weekend. I’ll likely travel down for a couple of days, but it will be to visit before returning home. I’m officially home, which is a positive transition, but not without it’s own level of sadness.

#TeamJustus together weathered some dark days of this storm with our little warrior. For those of us who were on site it certainly was a gut wrenching experience at time. For me, I’ve told many people, watching my daughter suffer was almost harder than watching my grandson go through his battles. Of course, all of our dark days are put into perspective when the Lord wakes us in the middle of the night to pray for the Wall family! We have so much to be thankful for. Why? This side of heaven we’ll never know for sure! But for me leaving him today was hard, knowing this time I’m really leaving for good (other than visits). There are several hard parts about this transition. None are harder than missing out on his progress. That’s why I chose to post this video of him riding the tricycle. I want you to notice the entourage following him, complete with PT/OT and music accompaniment, and if you listen you’ll even hear grammy’s tearful voice. We know we are in for a long road, but how fun are high points like this one!!! I was there to watch him ride, but I know I’ll miss others exciting firsts. It’s part of the new season we are entering with him.

Some of you that have had to go through similar types of transitions, I hope this resonates with you. Someone who had to make the move sooner is my daughter Jordan. If you’ve been with us then you might remember way back on day 13 when she wrote part of post #2 ( I asked her to share some of her perspective about her transition back into normal life. Here’s Jordan (age 25):

The last few weeks I’ve been coming back and fourth from work and Portland. Since then, I’ve started a second job, school has started and I’ve fully immersed back into a regular schedule. Its hard to explain what it feels like to be away from him.

Last night I cried myself to sleep. Justus had a great night, he was asleep when I went to bed, but someone posted a picture of him and I saw it and was immediately overcome. I miss Justus. Yes I miss being in Portland caring for him but I miss him. I miss hearing him laugh, joke and talk to me. When I’m at the hospital I don’t realize how much I miss him. In a post a while back I wrote a small piece to thank you all for your support. In that post I told #TeamJustus I lived with Justus from the time he was 18 months-24 months.

Thinking about everything he’s going through right now makes me think about my time with him. One of the days at the hospital I went back and watched videos from my time nannying for him. He was at such a special age. I saw him jump off two feet for the first time, count in Samoan, learn the alphabet, colors and so much more. We even potty trained while I lived there. He’s re learning so much of what I saw him learn during my time and I’m even more proud now than I was then.One of my favorite things to do with Justus was take him to the Nashville Public library. Those of you from there, if you have kids, take them. They have an amazing program where they do a full puppet show on their childrens floor. Every library day we would wake up, have breakfast, play and then I’d say, “Jus, should we go somewhere today?” and with an extremely excited face he would say, “The library?! See Ms. Mary?” And I would say “Yes! Lets do that.” On our way to the library we would play our CD from music classes and sing the songs together.

For those of you that have never met Justus, I cant wait for that day for you. He has such a unique ability to read people. He knows when the situation calls for quiet, entertainment, laughter etc. One more I was really tired and frustrated because I hadn’t got much sleep. He walked over to me and with his hands on his hips said, “Jorjor you know what? I love you deeper than the ocean. I love you taller than a mountain. I love you this much (With his arms spread as wide as they could be).” Instantly my morning changed. Instantly I was happy. That’s Justus, that’s the little boy you’re praying for, that’s the boy I miss dearly. Keep fighting Jus. I love you deeper than the ocean Bubbies.