Year 7

Birthdays. They will never be the same. As we approach year 7 for this little lady, I find it difficult to be cheerful. I’m grateful that she is still here with us, however, it’s like she’s almost a different child now.

I recall being pregnant with Bridget and discussing goals that we had for her future...none of which will ever come to fruition. I feel naive. As new parents you assume that parenting will be routine and (mostly) full of joy. Here we are now, in a place that I never could have dreamed up. 

No more goals of joining a sports team. No more visions of shopping for her prom dress, or attending a school dance. No hopes of college or a future career and family of her own. I’m having a difficult time processing this as we observe Luke, our 15 month old, surpassing her in most (if not all) cognitive and physical areas. 

Many people have asked for an update. How was her swallow study? Well, to be honest, it went better than expected. We need to start limiting bread type items as they are easier to choke on, and we will continue to monitor her eating at all times. So as far as where we go from here, we will do those things and continue to cut her foods up incredibly small to minimize the choking hazard.

This week we also had an eye appt. to observe her growing cataracts. They are larger than they were but not to the point of surgery just yet. We are being transitioned to a different doctor who specializes in removing cataracts as that is most likely in her future. The only other real update would be the frequency of her falls and decline in her bowels. 

She is definitely falling more often now. As much as we try, there’s just no way to be near her 24/7. Due to her lack of awareness, it seems that each time she falls she hits her head also. I’m glad we will continue to have her brain monitored (hopefully yearly) to look for any sort of bleeding and also to be able to compare the level of deterioration to her brain.

As far as her tummy troubles go...we can tell rather quickly if she is having bowel issues, although she isn’t able to verbally tell us. It starts with pacing, itching, and a general sense of being uncomfortable. Due to the fact that her internal organs will continue to slow down their functioning, we need to constantly monitor any changes in appetite or bodily functions. 

Year 7 was not supposed to look like this for Bridget. She should be going to the pool with her friends and begging me to go shopping or to a movie. I guess my overall outlook on this next year of her life is to enjoy time spent with her and continue to search for an answer to the ‘why’ that has been brewing in my heart. Why her? Why this awful syndrome? Why allow her to be born knowing she doesn’t have the chance that other children do? What is the lesson that I’m supposed to be learning? 

We will continue to keep you updated.