2020

I’ve been trying to put into words how my husband and I have felt lately. There’s really no clear cut explanation. There are so many days now that once we put the kids to bed, we sit in silence, literally unable to even carry on a conversation with one another due to the pure exhaustion and overwhelming nature of each day. Sometimes I wonder what being tired would feel like if we had two “typical” kids.

The past month or so have been challenging to say the least. Amongst various happenings, Bridget had her well-check and also neurology appointments. We try to trade off on going to the appointments to save our days, but also because the information taken from each appointment is pretty heavy and taxing on us. Michael took her to the well-check appointment, and luckily that went smoothly. Bridget’s pediatrician has been with us from the beginning and spends ample time with us whenever we bring her in. 

Next, was the neurology appointment at Blank and I was up. I knew going into it that I wasn’t going to get any groundbreaking news, but I also went in with a request. As morbid as it seems, my suggestion was to be able to set up annual brain scans to observe the atrophy to her brain. Even typing that out makes the hairs on the back of my neck raise. I can’t thank the doctor enough for spending time going back through our records, consulting me on what she knew, and also being honest with me about what she didn’t know about the syndrome. In fact, she looked years back at Bridget’s records and we examined the prior brain scans that she already received. When she commented that the regression was quite dramatic in the last year and a half, it confirmed my feelings and the request to keep coming back yearly to check in and prepare ourselves. 

Her neurologist agreed that the annual check-ins would provide needed information, assistance with future medical services, and also preparedness for Michael and I as her parents.  I am also grateful for the genuine hug she ended our appointment with. 

Moving forward into 2020, January is filled with more appointments. Her school IEP is due, which now just seems like a big family event. I can’t express how wonderful her “team” is at Lawson Elementary. The other big thing coming up is an appointment to get fitted for AFO’s (ankle braces worn inside of her shoes).  The mobility in Bridget’s ankles has declined dramatically and the AFO’s should help to hopefully slow the progression and keep her walking longer. 

I used to be excited about the calendar changing, but now I just see Bridget’s life flying before our very eyes. I don’t know what all will come of the year 2020, but we will continue to try to lean on one another and find the positives wherever we can.  Thank you for standing by us.