The Day That Turned Our World Upside Down

On April 21st 2015 we were back checking in on Floor 6, Reception C. Going into this appointment there was not a lot of anxiety; in fact Craig was scheduled to be out of town for work and we didn’t think it would be that big of deal for him to miss this appointment. As we sat down in the waiting room I once again felt so grateful for the position we were in…it can always be a lot worse. There was a mother holding her infant baby that had a ventilator and feeding tube in and another caregiver wheeling their severely disabled child into the check in area behind us. My heart goes out to these patients and their families and can only imagine the journey they have been on. 

Just like 4 months before we were called back, weighed in and placed in a room to wait for Dr. Neil. When Dr. Neil came in she started her thorough examination along with a lot of questions. She saw Mr. Dan (PT) quite a bit in the hospital so he had updated her on Camden’s progress in addition to the notes in the computer.  

At this point Camden was 10 months old. Camden was not crawling which we had been working on in PT along with other activities with Mr. Dan. For a month prior Camden had been drooling a lot which is typical for kids this age due to teething but he also had a protruding tongue. When you tried to pick Camden up by the arms he would stiffen up and not allow his arms to go straight up against his ears and above his head. He seemed to have gone from feeling slightly ‘floppy’ to slightly rigid. He was unable to pull himself to standing but the good news was that Camden was able to bear weight on his legs and stand holding onto something which is a big milestone when you are assessing muscle tone. 

After she completed her exam she looked perplexed and I asked her what she was thinking. The protruding tongue, drooling and rigid tone had her thrown off. The words that followed was what changed my ‘he’s a little behind but will catch up’ attitude. She looked at me and said ‘when I see kids shift from low tone to high tone I think cerebral palsy’. I blacked out from that point forward. Cerebral Palsy? I have to admit I was not remotely educated on the ins and outs of cerebral palsy but the little I did know about it was what I saw in the waiting room an hour before…wheelchairs, unable to walk, unable to talk. My mind raced through the next 40 years. Pure devastation ran through me.

I really can’t remember what was said after that point because my heart had fallen into my stomach….my whole world just potentially changed. The interesting part of her statement was not that he had cerebral palsy but that it was what she was thinking at that very moment. All as I heard was, cerebral palsy. I remember driving home from that appointment and calling Craig. As devastating as it was for me to hear at the appointment, hearing it second hand was a much tougher pill to swallow. It was at that point that we agreed that he should come to all of these specialist appointments with me.

The days, weeks and months that followed were pure misery. What were we going to do? Why us? What did I do that caused this? This was Mom worry, stress and guilt on a whole different level.  I had to do something to ease my mind. I had to ‘fix’ this. The University of Michigan has a patient portal where you are able to communicate with your medical team. I sent Dr. Neil a message and below was her response:

So for the first time in my life I had to try to sit back and wait it out.  It would be 3 months before our next appointment with Dr. Neil but with the future so unknown it felt like 25 years.  Good thing we had this guy to keep us going!

​​​Until next time –

3C’s and a K