Changes upon changes

 

Have you ever sat and stared at your child’s chest, wondering if that would be the last rise and fall of their chest…their last breath? I find myself doing this daily now. Every little thing we do as a family I question, I hesitate. We recently put out some Halloween and fall decor…will this be the last time to do our yearly traditions where I have a full heart? These thoughts send me into a tailspin most days, trying to wrap my head around how I will be able to survive it all, while continuing to work, be a good mom/wife/friend, etc. 

Changes have been occurring with Bridget so rapidly now that it is hard to even keep up with them. I find myself reaching out to our hospice nurse often, trying to figure out what I can do each day to lighten our load and be able to function, and constantly holding my breath waiting for the next shoe to drop. When I say that changes have been happening quickly, I mean that I never thought we would be here back in February when Bridget was first getting her g-tube. That was more of a proactive decision because she was starting to struggle with eating…and now…cut to September, and she is no longer eating or drinking anything by mouth. We pushed this at home for quite some time, but we had to finally mentally accept the fact that she can no longer eat (let alone pick up foods and get them to her mouth) safely. 

Once that decision was made, we tried to stick with Bridget being able to drink fluids still, even though we would have to hold her cup for her…but even that would result in coughing and choking fits. So in a mere 6 or 7 months Bridget is now receiving all fluids and nutrients via formula and her g-tube. We’re even at the point of ordering all of her medicines in liquid form so they can be delivered through her tube. At times I almost have to snap myself out of thinking that this is all a bad dream. My wild little pigtailed baby is piece-by-piece dying before my very eyes. 

A few months ago, I would have told you that we weren’t prepared to start working with the pediatric hospice team. Clearly I needed to adjust my view of our current reality, and transition to what I knew deep down was the best route for us. I know I wrote this in the last post, but pediatric hospice is so different than adult hospice. I have had experience with friends relatives and my own grandmother in hospice care. I know that those experiences can tend to be quick and jarring. Honestly, that is what I prepared MYSELF for when learning that it was time to bring in hospice care…and then I met our hospice team. I could literally begin sobbing right now about how gracious, patient, gentle, and caring they have already been after only knowing us a week. Bridget has already been advocated for, loved, checked up on multiple times, and treated with such kindness that I am blown away. Anyone that goes into working with hospice care truly deserves angel wings in my book. 

The waves of grief are becoming more vicious to ride through. I feel as though I’m a statue being weathered away, day by day, and pieces of me are breaking off all around me. Every time I check to see if Bridget is breathing I shatter. Every call to hospice, I crumble. Every morning that I wake up to my alarm and truly have to convince myself to go out into the real world to face problems that seem so trivial to me…I trudge on. 

How do you know if you’ve reached the max level of what you can handle though? I’ve been told many times recently that I “wouldn’t be given more than what I can handle”. Well excuse me…but in my opinion that’s bullshit and I’m over here frantically waving a white flag. The topic of ‘quality of life’ has been brought up in our household over and over. We try to include Bridget in everything that we can (safely), but it is starting to become so hard. She can no longer enjoy meals with us, sleeps the majority of the time we are together, and I couldn’t even tell you if there were any new things that she likes anymore. It is defeating as a parent. We already feel responsible that our genetics allowed this to ravage Bridget’s body. Now she can’t even use the little strength she has to enjoy whatever time she has left with us. 

Some of our new routines consist of everything (liquids/nutrients/medications) through her g-tube as stated before. Tonight Luke asked me why Bridget couldn’t eat supper with us anymore. The fact that he is concerned that she might be hungry shows me how much he cares for his big sister. Another change is that Bridget has now developed dystonia. This usually occurs in the evenings when she is even more worn out than normal. Dystonia can cause jerking motions, cramps in her arms/legs/neck, and other involuntary movements. I am sure that we will need to introduce some medications to help with this in the next few weeks or so as it is starting to become increasingly frustrating and painful in the evenings. 

In reflecting on all of the changes lately, I think that the biggest obstacle that Michael and I are up against, are the daily trauma triggers that happen when you aren’t prepared. Today I was reading a book to my students (a book I’ve read at least 10 times now). When I got to the part where one of the main character’s sister passes away from a long-time illness I had to stop myself from not bursting into tears. Thoughts raced through my mind: How will Luke handle this one day? Will Greta have many happy memories with Bridget in them? These triggers are everywhere…and they make every day so taxing to get through. 

So here I will be. Avoiding trauma triggers like the plague, finding strategies to help myself cope every single day, and willing myself to weather the Sanfilippo storm without combusting into a million tiny pieces. We don’t say it enough…but thanks to everyone for your kindness, prayers, and patience with us while we struggle to stay afloat.