I received an email from another special needs mom a couple of days ago asking me if Hannah was “okay” and if everything was alright because I don’t seem to be posting as much as I used to. Then as I look back at my posting for the past few months, it does seem as if I post less than I used to.
This blog is like a therapy tool for me. Yet, I realize I really only like to share when I have good news to share. Some sort of accomplishment or milestone achieved. But those are becoming more few and far between.
I feel that we are losing the fight for Hannah’s life. For whatever reason, her condition is continuing to deteriorate in so many different areas and there is nothing I can do about it. To list them all right here is just too painful and seeing the list in front of me would just devastate me right now.
I was cleaning out our old computer so I can work to get all the videos off it. I went through all the videos from the day Hannah was born up until she was about 7 months old and a couple of sporatic ones throughout the past couple of years.
It broke my heart seeing all the skills that she was able to do just 13 or 14 months ago that are so much of a distant memory that a part of me must have blocked it out. I saw a video of her just sitting there, non W-sitting, at around 14 months old playing with toys in her hands, putting her little people in her mouth, picking up new toys, and just very steady and secure. There was the video I took of her at around 6 months old eating food for the first time in her high chair, sweet potatoes. Then there was the video of her at around 15 months or so with her standing against the couch, cruising with her little peoples in her hand.
Then, on top of all of that, I have what Dr. Barranger, a Gaucher specialist who comes out to Vegas every 3 months, ringing through my head at our visit a couple of weeks ago. “Unfortunately, even if there was something on the horizon, Hannah’s condition is too severe for it to likely affect her.” At the time I just kind of blew it off without a response, but those words keep coming into my head and heart.
It hurts. It really hurts to see her losing more and more function and skills. I’m scared for her. With these increased laryngospasms or reflux problems (which no one can seem to answer for us definitively), we are seeing a lot more tears and winces of pain and fear from her. I hate seeing her go through this.
It is all I can do to just be able to cuddle her and give her kisses. There isn’t much to play with her since she has lost much of her fine motor control and strength. We still continue to read to her, let her watch her Wiggles and Backyardigans, and let her roll around the floor (since she can no longer sit or crawl).
We have our meeting with the movement disorder specialist next week in California. I’m not expecting anything, but I am hoping that there is something we can do to improve her quality of life. I just know that she is just such a unique ‘case’ and not close to textbook that to expect answers is just not realistic.
I guess maybe I am not so much at a loss for words as I thought. But sometimes these are just not the words I want to have to commit to writing down because it just makes them more real, and even though I know what the reality is, I just really wish it wasn’t the case.
We had Hannah’s birthday party this weekend, and it went off without a hitch! Our friend’s hosted the party at their house, and my in-laws provided all of the food and the fantastic Mickey and Minnie beach party cake (with the exception of some amazing ribs cooked by our host!).
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