In my head

 Lately, I have found myself living a majority of the time in my own head space.  I cannot escape the dreadful feelings that consume my thoughts about Bridget's future.  It seems that every time I turn around, something more challenging is on the horizon.  Bridget turned 9 this summer, and that age was something that I have feared for a few years now.  9 in our household DID NOT mean a new phone, having a girls day to go shopping and get pampered, or even have a sleepover with friends.  9 meant the same thing it has since Bridget turned 1: spending the day with just family, where Bridget is most comfortable. 9 meant changing her diaper and clothing for her, brushing her hair and teeth, carefully selecting what she would eat and cutting it up for her so she would not choke, and making sure that she was as safe as possible throughout the day.  

I haven't told many people this, but on the morning that Bridget turned 9...another little "Sanfilippo sister" of Bridget's passed away...at the same age of 9.  To say that the news rocked my emotions is an understatement.  All children with Sanfilippo have their own trajectory as far as regression goes.  We have known for a long time that Bridget was on the decline.  I have seen some other children with Sanfilippo Type A (the same as Bridget...and the most severe), who have many more skills than Bridget possesses. I believe that is what makes it all the more challenging day to day.

I had this fleeting concern the night I was cuddling Bridget before she went to third grade.  Would this...or could this be her last first day of school?  I hate that my mind goes there.  But in reality, I need to be honest with myself with the possibilities out there....especially when I see young lives coming to a halt time after time within the Sanfilippo community.  I know that it may not seem healthy to some - to question these things - but for my own sanity I feel like I am always trying to prepare myself.  In that same breath, I know that she is, as far as Sanfilippo goes, decently healthy.  School year colds and illnesses, along with weather changes, often bring extreme anxiety regarding what potential illnesses may arise throughout the year.  It's not even just the illnesses themselves, but most children can tell you ahead of time if they are starting to not feel like themselves. Typically the only way that Bridget isn't feeling the best is if she has nights of crying fits, pacing for hours, or becomes red with blotchy patches all over her body.  It's a total guessing game as to what is bothering her.  I so wish that she could just tell me what is bothering her, or even to be able to point at an area of her body that is in pain.  

I feel as though I am repeatedly working through similar and new trauma every.single.day.  In our household, Michael and I mentally and emotionally work through things that are lodged in our minds and on our hearts regularly.  Yesterday morning, as I was getting Luke up for the day, he asked if he could wake Bridget up (he really enjoys being the one to pull her covers off each morning).  As he was doing that, I was opening their blinds.  The next thing I knew, her covers were pulled off and Bridget fell onto her head on the floor. She isn't aware or capable enough to try to catch herself or put her arms out to stop the fall.  Luke immediately felt awful, and I in turn felt helpless as I should have been able to reach over and catch her.  Every injury to her head traumatizes me.  I also worry about if or what she might be thinking too.  Is she frustrated with herself that she isn't able to stop herself from falling, or being able to sit up on her own, or dress herself?  

Part of me being in my own head space is analyzing Bridget throughout her daily activities.  For example, eating utensils are pretty obsolete now.  Every once and awhile she will be able to use a spoon, but other times she will try to pick up her fork upside down and cannot pick up any food to feed herself.  Does that mean her motor skills are continuing to decline at a typical pace for her syndrome or more quickly compared to the past?  More food ends up on the floor each meal than is actually digested.  She also isn't able to drink from a straw and barely able to drink from her water bottle anymore either.  Does this mean that she isn't getting enough nutrition or fluids daily?  We are getting yet another swallow study set up to determine her eating and drinking capabilities, to see if and when a g-tube is now necessary.  

I told Michael the other day that I just feel like I cannot keep up or compete anymore.  I feel like I am at the tail end of a triathlon every morning, the minute I wake up, and I cannot seem to catch a second wind.  I have been trying to establish 45 minutes each day to focus on myself (typically a workout to try and clear my mind), but I even feel selfish doing that.  Everything goes back to the thought of Bridget being 9...an exciting age for growth and change in most children, but an age that brings quiet tears to my eyes while in private.  

All of these growing concerns make me think about how important it is for us to spend as much time together to truly appreciate our family.  How we need to do family pictures so that I have every one of my family members represented together.  How I want to make sure that Bridget is happy and enjoying every day of her life, even if it just means me taking her on a walk in her stroller chair.  It also means trying new meals as a family, that I know Bridget would be able to successfully eat...even if we have to spoon feed it to her.  As well as taking the time to make ALL of our children feel special, and throw time and energy into our marriage as well.  People always say "family first", but it's so easy to get wrapped up in the day to day mundane tasks that we often forget to actually put our families first.  We are intentionally trying to find ways to spend that quality time together...for as long as we are able to as a family of 5.

Thank you for listening to my ramblings.  I know I am not the best when it comes to talking about Bridget face-to-face (my emotions always take over)...but know that I do appreciate when people reference or ask about Bridget.  One of the things that absolutely puts a smile on my face is when people do attempt to interact with Bridget, even if it is just a hello.  Please share with your children how important inclusion is. There is no need to be afraid of children that may be nonverbal, or have unique traits, or "gear" that assists them daily.  

Although we are riding tidal waves of anticipatory grief daily, and we may not always vocalize it, we cannot express how grateful we are for the continued support for Bridget and our family.