Life lessons

Moderate atrophy of the brain.

Posturing of the feet.

Stiffening of joints and limbs. 

Loss of mobility.

Loss of speech.

Loss of ability to self-feed.

I’m going to be blunt. I have been so overcome by grief and anxiety lately. All of the terms above are things that we are dealing with in our household daily. I feel Bridget’s personality slowly slipping away. It’s ever so subtle, but it’s happening. Sometimes she’s so vibrant and aware of her surroundings, other days are slow and filled with naps and rest time.

With everything going on, I find myself pulling away from things; people, activities, and events. I decided to take a break from leadership roles at work. I’ve gradually become more of a hermit. I’m quick to turn activity invites down, usually because I just can’t relate to other people anymore. It’s a funny thing to find yourself unable to communicate with those around you, when the concerns that you face on the regular seem to engulf your whole being. 

How is it possible to simultaneously feel like I’m doing so much for Bridget, yet not enough at all? At times I feel like a failure. Is she enjoying her life? What is she thinking? Does she understand when I tell her I love her? I pulled a muscle in my back lifting her the other day (she can’t step up into bed/the tub/the van anymore), and realized just how scary it would be if something were to happen to Michael or myself. Not only do Luke and Greta depend on us, but Bridget is needing more and more support these days. I NEED to be doing enough for her.

Secretly, I’ve been posing as this mom who has her shit together. I live each day, going to work with a fake smile on my face, praying that I will just make it through another day. I try to put on that happy face, but it’s been more difficult the longer we battle the Sanfilippo beast. 

I feel guilty that at times I feel like I’ve reached my limit. The point where I have to admit defeat and ask for help from others. A while back, Michael and I had a date night; they’re few and far between. We needed time, just the two of us. Unfortunately, when we do have these opportunities, we fail to follow through with plans we had previously created. We ended up going out to eat and then watching some tv before crashing. 

I had a friend tell me, “that’s so typical of parents with young kids though” (regarding having low key date nights and being overly tired). I wish it were as simple as that. I wish it were just the typical exhaustion that swallows young parents, but it is so much more than that. Another friend reminded me how frequently I am reliving the trauma that comes with Bridget’s diagnosis; whenever I hear of the successes of other children, when I watch our friend’s children grow up, when I see my other 2 children surpassing Bridget in simple milestones. 

I’m not naive about the challenges that Bridget is facing. We’re very aware of what looms in the future. I’m not sure if it’s the fact that Bridget is coming up on her 9th birthday (next month), seeing how rapidly Greta and Luke are flourishing in their growing skills, or if it’s all of the “alone time” that I have in the summer while Michael coaches….but Sanfilippo has been ravaging my brain the last few months. 

Yet another lesson that Bridget has taught me is just how fleeting life is. We can’t live our life wishing our time away, or focusing on all the negatives in front of us. Rushing from one thing to the next in hopes of something to pass the time by. I find myself regularly looking back at photos from a year or so ago and see how drastically Bridget has changed. 

I have always been a person that enjoys taking time to sit alone and reflect. And although the terms above are plastered in the front of my mind daily, I’m doing my best to spend this summer focused on making positive memories with my family. With the help of an old college friend (and the community that she created), I am carving out a little time for myself and my own mental health as well. 

Within my reflection the other day, I recalled an article that was shared with me years ago, about how you only really have 18 summers with your children. We would be extremely lucky to be able to have all of those with Bridget….and knowing that she’s half way there already…drives me to push forward each day. Bridget has motivated me to be a better person. I hope her story allows you to slow down and focus on the here and now too. We only have so much time together. 

Bridget may not have her words anymore, but she continues to teach me valuable life lessons.