I haven’t been posting as much recently because things have started to calm down a bit, and we are finding ourselves getting into more of a routine with everything.
Hannah is now at 5 therapies a week (PT, OT x2, Dev therapy, and vision). We are still working on getting the speech pathology consultation. She is making great progress in physical therapy, meeting 2 of her 9 long-term goals and 3 of her 5 short-term one-month goals. OT, well, we are slowly making progress as well, adding goldfish to her list of munchies. Still having incredible sensory issues with spoon feeding, so we are still on stage-2 type foods unless they are snack-type foods she feels comfortable gumming on.
Since little Ethan M. and Niamh have passed away, I find myself feeling very sad and even guilty at times. This disease is just so overwhelming emotionally. Hannah is still here, and she is, for the most part, stable in most aspects. I’m so thankful for this, but the “when” is still hanging over my head. I feel guilty because Hannah is still here, at 14 months, and beautiful little children like Niamh and Joseph were hit so hard and taken so early from their families.
It just constantly reminds me that this disease needs more awareness, more research, more funding, etc., but it seems that very, very little is being done in the way of this. I admit that I have had to take a step back from my intensive “search for a …” over the past few months because I was becoming overwhelmed and obsessed, having to reprioritize things in my life because my other children and our family dynamic were starting to be affected.
But I need to do something… I just don’t know what to do anymore.
Carrie, you are the shinning beacon for those with this frustrating disease. I learned more from you and your blogs than any doctor has ever told me. I am now aware that i am not alone and there are others suffering and suffering much worse than I. Dont give up hope and dont stop spreading the word. You touch people, like me in ways you will … Read Morenever realize. No matter what the outcome, God is using you to do good and He is counting on you to continue. You are good and Hanna is your gift. Her birth will not be in vein and niether will your commitment.
Carrie, Please don’t feel guilty. You have absolutely nothing to be guilty for. We can’t explain why things happen the way they do and it will never make sense. We always thought about the “when” or “how”. It tore us up most nights and it still does. All we could do was keep our heads up. And seeing Ethan’s beautiful smile made all the difference in the world. Just know that when little Hannah looks up into your eyes and smiles so big, that’s her way of saying “I love you Mommy and thank you for all you’ve done.” I’m not sure what kind of advice to give to you, but just know that your are strong and Hannah feeds off of your strength. Keep up the awesome work you are doing. You truly do give hope to all of us. They WILL find a cure, and Hannah and yourself will have had A LOT to do with that. God Bless and stay strong.
You caa only go 180 mph for so long and then you need to slow down to enjoy the scenery. Please don’t beat yourself up for prioritizing!
I agree that you shouldn’t feel guilty. It nice that you can have a bit of a routine. 🙂