A Different Perspective

 


Last week, as everyone else was taking their last day of school pictures, it occurred to me that I just don’t want to do that with Bridget anymore. I understand the purpose, and I have also done that in the past, not to mention it is so fun to see the change and growth in everyone else’s children. But from my perspective…I don’t see joy in comparing Bridget’s beginning of the year school picture to her end of year shot anymore. I see regression. I see weakness. I see negativity and losses. And then it occurred to me, what if it actually was Bridget’s last day of school…ever?

My mind is absolutely engulfed in the rapid decline Bridget has shown in all areas of her life this year.  To be honest it actually sickens me to see the abrupt changes that have occurred in the last 10 months.  One of the bigger changes has been the fact that Bridget is no longer walking (this I have mentioned before).  That puts a lot on our plates to carry, shift, and adjust her in whatever we happen to be doing.  There is no more watching Bridget bop all over the place, rather it is a daily struggle to find comfortable seating options that will help Bridget to stay propped up and not fall over.  She now has very little core strength, which means sitting her on the floor upright will end up in her toppling over.  She also isn't aware enough to put her hands out to stop her from banging her head or face on the ground.  Her helmet is also of no use now as her neck strength has almost deteriorated to zero.  The weight of the helmet is just too much for her, and she tends to sit with her head falling to the left side at all times.  We are currently on the hunt for an appropriate chair that we can bring outside for her to use to at least get some fresh air and sunshine.  

With it being summer time now, a lot of my time is spent one-on-one with my children while Michael is off doing coaching duties, practice plans, youth camps, and games.  The days are often long as I try to find activities that can accommodate all of the kids.  One of Bridget's long-time favorite activities was swinging outside in our backyard.  I feared the time that she would no longer be able to do that...and that time is now.  Her hands just don't work the way that they used to.  Her muscles are weakening, and her joints are stiffening causing her hands to be balled up, and her arms kept tight and close to her body.  

Our biggest concern at this point in time, besides the fact that she isn’t really eating on her own anymore, she isn’t walking on her own, barely able to sit on the floor without falling, and bath time is a major struggle, would be the amount of time she is now sleeping. Her body is just so overworked. It seems like every ounce of her strength is depleted with the most minuscule of tasks.  Going from the child that was literally like a human bouncy ball, non-stop moving and literally NEVER sleeping, to now needing to be woken up just to get formula in before she heads back to bed, is incomprehensible.  I would say that on the average, Bridget sleeps between 70-80% of her days.  I recall reaching out to other Sanfilippo parents and asking when her hyperactivity would "calm down", only to be told to cherish the moments...because they would soon be gone.  And once again, here we are.  My child is literally dying a slow death in front of my very own eyes, and there's absolutely nothing I can do to stop it.  

I worry that my time, attention, and mind are so centered on Bridget that my other 2 children are getting the bare minimum from me. I absolutely treasure time that I get to spend with them individually. Although I know they are young, I really do worry about the long-term affects that Bridget’s regressions will have on their psyche. Currently, Luke shares a bedroom with Bridget. I know he loves doing so because whenever we’ve tried to move him to his own room he asks if “Bridget gets to go too”.  I’m at a point that I truly have thought about the things that other Sanfilippo parents have thought. Like, what happens if one morning I walk in and Bridget is no longer breathing? There’s no way to know how I will react. I want to avoid Luke seeing that at all costs. Even now, the thought of that scenario brings a nauseous feeling to the pit of my stomach. 

 I'm choosing to spend this summer finding moments that fill my heart.  We are lucky enough to have a couple of respite friends to help with Bridget, and even the other 2 at times.  This allows Michael a couple of outings (when he's not busy with baseball) to actually see one another. I also have been able to take Luke out on a little mommy/son date for ice cream which he really enjoyed. One of my other "goals" that I am working toward is getting out of the house alone or with friends every once and awhile to focus solely on me...which is easier said than done.  Lastly, another highlight will be when Bridget finally receives her new wheelchair, since she has outgrown her old one.  I used to hear about people complain about insurance companies, and never really had an issue until our terminally ill child NEEDED medical equipment to get from day to day.  It has been a frustrating learning curve, and after several months, and our amazing team advocating for Bridget, we should be receiving her new wheelchair next month.  That will really help with getting out of the house, and keeping Bridget comfortable too.  

Solace is a word I have been gravitating toward a lot lately. In simpler terms, it means to 'find comfort in an otherwise negative situation'. I’m trying to find the glimmers of positivity in the cuddles, the time that Bridget falls asleep on my chest (which is often now), when Greta and Luke love on their big sister, and also in the kindness and love that others continue to show Bridget. We cannot thank you enough for being there for all of us through this...it means the absolute world to us.  Thank you as well for the grace that you have shown, as many of you have caught Michael or I on a "rough" day.  We appreciate you more than you know.


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