Blessings

You all know I struggle to post when things are going so well, because I fear that we will hit a downward spiral quickly. However, today is June 16th... 9 years ago my son almost left this earth. In hindsight the fact that we had a room full of nurses and four doctors in his room should have been scarier than it was at the time. When our ID doctor told us to go sleep he wasn't leaving the station outside Bub's door, we should have known. We were lucky, we really never grasp the gravity of it all at the time. I remember sending away the social working who wanted to get Ayden all signed up for his disability paperwork. I remember thinking -  My son? He is so small?(ok, young, lets face it Bubba was never a small baby) He will get better. Fast forward to 5 years ago, after driving ourselves to Cleveland (because neither of us were allowed in chopper that flew Bub there) we spent the whole night at his side only to see him crash in front of us again. Again, we watched and waited to see if he would stay with us. That time was tougher because we did know just how bad it could get.
Fast forward to today, there are still moments that can bring me to tears: holding babies, seeing his preschool mates doing amazing "normal" kid stuff, watching families with 9/10/11 year olds go on fun trips, or hearing the sound of Sam in the air or sirens on the road.
However, despite it all he is thriving, so enough of the sappy stuff!

As summer break has started we are hearing phrases(that we say) coming to life more often. One of my current favorites "Really Ayden?" I cannot count the number of times I utter that phrase. We saw Julia, his PT for 7+ years, yesterday and she said he was doing well. His shoulder is dropping again so perhaps taping again in his future, and for the first time ever she could not move his left foot. He was significantly struggling with his gait about 6-8 weeks ago and I tried to get in to see her then, but schedules didn't work. We scheduled another visit next week to see if his issue is a fluke, I am hoping so. I also now know how to navigate the system to insure she sees him when we need her to. In her words, when we call it is important and she wants to get us answers. We have some 3 days in a row mini intensive sets this summer as well. Her goal is to start working on running...funny thing is Ayden came outside yesterday yelling "I did it!" meaning he learned how to unlock the lock on our backdoor. Great! Just when I started to think I could relax! lol!
One thing I have been meaning to write about for quite sometime, like maybe a year or so is our church. We have been attending Stroh Church of Christ for about 7 years now. We used to be able to drop Bub at the nursery like normal parents and they even let him stay with the younger kids versus the preschool children because he seemed to do well with some toys and space, and he still needed to be near the diaper area. We were able to attend as a family together. Then things changed, Ayden changed in between the surgeries, procedures, medicine changes, and everything else, church just wasn't something he could do. So for many years it was just Nessa and I or if the kids were with gma, Justin and I could go together. About a year ago, our church reached out to us and asked how can we help. We worked together on a few things and now this is what church on Sunday morning looked like for us. We pull in about 9 AM and walk in a few minutes after that, but before we get to the worship center, there are already people pulling chairs from the wall and creating a row just for us in the back closest to the door, with space in front of us. This has been such a blessing! We have been able to attend church as a family again. Are there days that Bub is not up for the challenge, yes. On those days he stays home with daddy. This welcome happens every time we come, even when it was very crowded on Easter Sunday they made a spot for us. Last Sunday, Ayden was swearing before we even got to the sidewalk, he was off, and we questioned whether to go. We did, and he didn't want to settle at first, but then danced with Georgo(his Curious George) and continued to do so even when he should have been sitting down. We tried to get him to sit, and then a tap on my shoulder came. One of the men from the church who had watched Bub for a bit said, "If he wants to stand and have his time with the Lord, let him. He has a connection with God you will never understand, it is beyond you and me." Yep, a tear or two fell, but he was right.
After great visits with Julia in Fort Wayne I question why we live where we do, it is so hard to get Ayden what he needs, it always requires A LOT of driving and time. Sunday, I was reminded why we live where we live, because that church 5 minutes away, doesn't care that we come late, they don't care that he needs his space, they welcome us and they are apart of what makes where we live our home.
One more blessing, June 16th does not have to be a sad day anymore, our Nessa has chosen to be baptized today at camp. That little, not so little anymore, always finds a way to make things better. Now she is taking this ugly day and making it a day of blessings.
 He has a plan, we just need to trust in him.
Thank you for keeping our little family in your prayers and thoughts, we are doing well.
 The Hoffmans