Preparation

 

As we near Bridget’s g-tube surgery (this Thursday), I am finding more and more moments that I am struggling to cope.  I have questioned whether putting her under anesthesia for yet ANOTHER surgery is really the best thing for her.  In my heart I know that it is…but knowing what this little girl has been through in her short little life just makes me feel so guilty. 

With her continual changes, loss of speech, and now the amount of time that she spends sleeping each day, I truly do worry about how much time we all have left together. Sometimes, I even find it hard to figure out what to say to Bridget. Of course we tell her we love her more times in a day than I can count, but it’s this weird middle ground of having a “conversation” with her and so desperately wondering what is going on in her mind.  When you have a child that is basically functioning in reverse, there’s this continual grieving process going on. I find myself doing anything in my power to try to get a giggle or smile out of her. I cannot even begin to describe how much I miss her sweet little voice, and I catch myself listening to old videos over and over again. 

The other day I told my 2nd graders that this next week was going to be a bit different than others, due to the fact that I would be gone on Thursday and Friday. They were all so inquisitive and wanted to know why I would be gone. When I mentioned that Michael and I needed to be with Bridget in the hospital, I could see the look of confusion in their eyes. Hands shot up with questions, and of course I would never divulge to them what EXACTLY was going on. But I did say that she would be getting a g-tube, which they are all familiar with. One of my students, I could tell was putting all of the pieces together in his mind, from what he knows of Bridget (he knows her outside of school too), asked, “So Bridget can’t really eat on her own, or talk, and is in a wheelchair now?” I sat stunned….realizing that yes….that does adequately describe where Bridget lives in the Sanfilippo realm now. I don’t even recall how I wrapped up the conversation, but that innocent question has stayed etched in my mind.

How did we get here? Where did my spunky little girl go? So many of the things I notice Greta doing now, remind me SO MUCH of Bridget at that age. Greta never got the chance to see Bridget’s daily mega-watt smiles. She never got to hear Bridget saying mommy or daddy clearly. The kids often watch as we cater to Bridget in a way that we no longer have to assist them. And in my head, I think about how strange that must appear to them. 

I know that Bridget’s surgery coming up is a relatively small surgery to some, but this will add on much more to the daily tasks that we have to check off our list each day. I worry that I won’t catch on quickly with the new feeding regimen, or the cleaning snd changing of bandages. What if I can’t find the strength to do this and do it well for her? Of course with questions comes big emotions, and here I am crying while I type all of this out. 

I know I’ve said it time and time again, but I’m grieving the life that Bridget should have had. I’m grieving the plans that we had for her when she was still safe inside of my belly. I keep trying to process how we will continue to explain all of these procedures and changes with Bridget to our other “typical” children. How will we remain strong together when even bigger challenges surface in the future?  

I know I was asked to provide another update….and I apologize as I am just really struggling to keep it all together right now. We do appreciate all of the comments, messages, deliveries, more than you know. And although I’m the first person to shed a tear when it comes to Bridget, I know that Michael is also dealing with a lot of anticipation about this surgery too. 

So as far as a quick “what’s in the near future” update on Bridget…here it is:

-g-tube surgery this week (overnight at Blank and hopefully able to come home Friday afternoon)

-in the process of working to get a newer wheelchair/stroller situation to accommodate Bridget and her growing needs with additional hip support due to her hip dysplasia

-in the process of hopefully receiving a SleepSafe bed to make sleeping arrangements safer for everyone. Bridget will fall out of bed without any awareness to catch herself, which means she falls directly on her head making for difficult sleep for everyone

-an upcoming ultrasound to evaluate a mass of veins that were seen in her MRI, to make sure that this wouldn’t cause any bleeding, loss of blood flow, or blood clots 

Again, thank you for everyone’s kind words. We ask for thoughts and prayers for Bridget this Thursday as she undergoes yet another surgery. We hope this will be the answer to our concerns of getting her nutrients in, provide her with adequate hydration, as well as assistance with giving all of her medications. 

We appreciate all of you that are on this journey with Bridget.