Adapting to changes

    I’m struggling. There’s no better or worse way to say it than that. I know for some people it’s taboo to talk about mental health, or whether you’re in a rut in life, but I want to shed some light and show people that there are many others in the world going through difficult times too. It can be isolating and infuriating all at the same time…feeling like you’re THE ONLY ONE dealing with these emotions…even though you’re not.

In my every day life, I have to be upbeat. I have to be positive. I have to put on a brave face and push through each day. Internally, I feel as though I’m an egg that’s cracking and about to shatter completely. How do people do this? How do people parent, have future plans for their children, parent their other typical children, and know what the future will hold for their terminal child? I’m struggling with what the reality of Bridget’s future is.

I can tell you from experience that having a child with Sanfilippo Syndrome traumatizes you as the parent on.the.regular. Just the other morning as I woke up early to head to a meeting at work, I observed a strange sound coming from Bridgets room. There aren’t many things in her room, and at this point in time she is not able to get up from bed on her own. When I went into her room I observed her small blanket covering her face and her inability of being able to remove it. I swiftly grabbed the blanket and threw it off of her and watched while she took big gulps of air. That’s the point that we’re at now. The inability to remove a blanket from her face. The inability to sit on the floor unassisted without falling backwards and hitting her head. The severe decline in walking, so much so that we carry her a lot of the time…or just utilize her stroller chair. So once again. Stabbed in the back with trauma. 

I just don’t know how much more I can handle. And in truth I feel so guilty even expressing that because Bridget is the one living through this, she is the one losing skills. She is the one that this isn’t fair to. But wow, it really has opened my eyes to what caregivers go through. Parenting and being a caregiver are 2 drastically different things. I signed up to be a parent, knowing full well what the expectations were….but learning to do nursing skills as well…that I wasn’t physically or mentally prepared for. Did I sign up for that….no. But you would do the same thing if you were in our situation. Caretaking can make you feel like you’ve lost your own identity. Questioning who you are. Questioning whether you’re a good enough parent to your other children, or wife to your spouse, or friend to those that you care so much about….but often don’t make time for. 

I’m always being asked “how’s it going”. Just yesterday a friend asked me to be authentic….and I was. It was a moment that I was caught off guard and chose to be vulnerable. It’s ok to share that you’re struggling.  In fact, I think it’s beneficial to others to share the truth because no one is living in a perfectly rosy dream all the time.

So what is new with Bridget then? She is still healing from her gtube surgery. I noticed some tissue starting to form and reached out for advice. It turned out it was a good call because Bridget had granulation tissue forming that could cause issues to her gtube site. A trip to her surgeon’s office, and a lot of cauterizing to the skin around and inside of her site, and she is starting to heal again. By the way, I pray that you never have to hold your child and look them straight in the eye as they are writhing in pain to burn their skin like that. It was pure torture. I felt awful not even being able to explain to Bridget what was happening, or why I was ‘allowing’ this to be done to her.

We are also in the process of securing a new wheelchair for Bridget. She has now outgrown hers, so of course we are fighting back and forth with insurance. I hate knowing that we require so many pieces of medical equipment…but at this point in time it’s a necessity. 

As the weather changes, and we might be out of the house a little. I just wanted everyone to be aware of the changes in Bridget. I know it can be quite jarring if you knew Bridget back from when she was little. That crazy, never-sitting, always running, little pigtailed red-head. But please still come up and say hi. She may not be able to say hi back, but I know she still loves people greeting her. And honestly, it means a lot to Michael and I to have people still giving her their love. 

Thanks for all of your continued support.