I don’t even know where to begin

This summer has pushed me past my comfort zone, tested me in many ways, brought incredible joy, and also completely shattered me. Did you know that all of those things could happen simultaneously??? Well, I didn’t. I always assumed that certain phases of life brought specific feelings. I never could have imagined that I would be experiencing so many emotions…so deeply…all at once.

If you know me…you know that my kids are my life. As a teacher, my daytime during the school year is focused on my students and their needs. It is so hard to switch from school day / to home time and everything that encompasses. Summer is always very much anticipated to solely put 100% of my attention on Bridget, Luke, and Greta. With that comes ample amounts of time (due to Michael’s various baseball needs) with the kids and I being together…just the 4 of us. Although this is incredibly cherished time spent together, it also predominantly places all family related stressors on my shoulders.

So much has changed in the last 6 months in our household. Bridget has slowed down SO MUCH now, that it is almost uncomfortable for me as I have been so used to her running around like the Energizer bunny all of her life. I miss her being able to walk independently. I desperately miss her voice. Now that Greta is starting to sing songs she enjoys, it takes me back to Bridget’s old singing days (if you’ve been along for her whole “ride” you know what I mean). Essentially, I am longing for what could have been now that I see my youngest daughter surpassing milestones that Bridget never accomplished. 

One major change that was made this summer was the slow elimination of all of Bridget’s daytime medications. Due to the excessive amount of sleep that Bridget was wracking up during the day, we opted to change some things up. We are now working with another specialty complex medical care doctor, who thought this might be a good option to see if we would see an improvement in her “wake time”. When I first heard this idea, I have to be honest, I was terrified. We spent ages searching, trialing, and tweaking the best arrangement of medicine specifically suited for B. To suddenly jump ship scared the shit out of me. To my surprise, however, Bridget has been much more alert, smiley, and even given us some unforgettable laughs. 

In our experience, however, when things start going well, something else falls out of place. I started to notice that at times Bridget would have almost intense, hysterical laughter. At first I was overjoyed, until I analyzed the situation further. I soon realized that many of these little giggle sessions were turning into seizures. So much so, that when I was getting the kids out of the car tonight and the laughing started…I knew immediately what was around the corner. With Bridget unable to walk independently, we have to assist her in 50% stepping and 50% carrying her into the house. Her laugh turned to manic laughing, then her face drooping on one side, her eyes going every which way, and lastly…complete loss of her body. She literally melted into a puddle in my arms, unable to do anything. I realized she was in a full-fledged seizure. I had been getting ready to bring our Target pick-up order in so I cradled Bridget and laid her in the back of my van. I have seen a couple of other seizures in other individuals in my life before, but this was indescribable. I cannot express the amount of sheer terror and guilt you feel when you are unable to help your child in a medical situation. Luckily the seizure only lasted about 45 seconds…which was the longest 45 seconds ever. After I carried her inside I called my friend from a couple of houses down, who used to be a nurse, to come and help me assess things…but more so just to have another adult by my side to help me through it. Bridget has experiences MANY tiny absence seizures, but the last week has intensified and really scared me.

As more and more children with Sanfilippo pass away around us, it has brought fierce emotions upon me. I have been reflecting a lot this summer about the journey we have been on with Bridget over her {almost} 10 years of life. This violently bumpy road that we are on has changed me forever. In some ways there are positives. I am able to truly take in small moments with my family that might easily be missed by others. On the other side, I’m    terrified of most things. I question, “Will this be the last ______ as a family” almost every single day. 

I’m trying to really work on taking things one moment at a time. Although there are VERY REAL hurdles in Bridget’s near future, I am trying to enjoy her in whatever capacity that means. She held my hand tonight for a solid 15 minutes, and that brought me to tears. I’m trying to be strong for my family throughout these difficult trials, but if I’m being vulnerable, damnit it’s hard. It’s hard to keep up a brave face. It’s hard to watch one child dying and two others flourishing. It’s difficult to spend the day emailing about meetings, trying to arrange specialized transportation, schedule respite situations, while also put on a smile to watch Michael at state baseball. It’s like I totally have to disconnect from myself and split into multiple different people. I don’t know if that’s normal, or healthy, or what anyone would do in this situation. 

Something that really shattered me was bringing Bridget to weekend respite at Camp Sunnyside (Easter Seals). She hadn’t been in quite some time, and her two usual helpers walked around the corner and gasped at the mere sight of Bridget. They quickly remarked on how she had “changed so much”, and although I know it is very much coming from a place of love and caring, it is another realization that Sanfilippo is ravaging my child. 

Some updates for the future:

*We are still awaiting Bridget’s new wheelchair (thanks insurance), and I’m hoping it will be here in the coming week or two.

*I have a request in to see the neurologist again to see if we now need to transition to seizure medication due to the drastic changes in seizure activity.

*We may be moving toward a g-tube pump (attached at all times to Bridget’s body) due to the major regression in the ability to eat and drink. Bridget lost a lot of weight the last couple of months, and we quickly realized it is because she isn’t able to take on as many calories herself, so much of the day is “feeding her” food or water through her tube. 

*Bridget has another appt. with our favorite behavioral doctor to see about medicine changes and see if there are other adjustments to make.

I just want to say again, that even though I often feel like we are trudging through mud, it means so much to hear all of the words of encouragement, the “hello’s” to Bridget, and the kindness our friends and community have blanketed us with. I don’t know what will happen in the next few months or year, but please keep sweet Bridget in your thoughts. We truly appreciate it.