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.
oh my dear friend! We pray for you on this journey and walk by your side, even from very far away. Someone asked me once how I plan for Jessica’s future. I told them that today is her future, tomorrow is her future, we live for the now, enjoy her and try to give her the best quality of life Today! That is all we are called to do, because no one can number the minutes of our lives but God. You are doing a fabulous job!!!
Oh honey I know how you are feeling! If you ever want to talk or hear what happened to Em the last few months I am here! I hope Hannah can pull thru and prove everyone wrong! Does she have seizures? Luv ya hang in there and never hesitate to contact me!
You ARE doing a fabulous job. Enjoy your Hannah cuddles today. xxoo!
Praying for you all!!! <3 xoxo to Hannah!!
I am so sorry my friend. I wish that there was something I could do to change the realities that you face on a daily basis. My heart grieves for you.
I want you to do something for me…. instead of looking at the old videos and pic…. pull out the MAW pics today. Spend some time looking at the joy on everyones faces.
Then call your dear friend in Ohio… she’ll laugh or cry with you… whatever you need. She loves you.
I sent you lots of hugs and prayers.
Oh Carrie, words can’t express what I felt when I read your blog. Although I don’t know you guys very well, I am absolutely in love with Hannah. She is such a joy and so sweet. Everytime I see her, I just want to hold her and take away all her pain, just like I do with my own daughter.
no words can ease your pain, I know that. But at least you know that you are not alone
Hugs, Carrie.
There are no words to describe how sorry I was when I read your blog.You know how much I love all your kids especially little Hannah and I miss you so much.Enjoy all the moments with her and think positive. She is a little fighter! I wish I could do something to ease your pain my friend.My prayers with you..
Hang in there Carrie. School starts soon which will be great for the kids. Don’t know about Ethan and Abby but my guys crave structure (even if they don’t know it). It will be good to get back into a routine. I know that Steve has been trying to reach you to check in. Message me a good time and we’ll call again.
Carrie, I’m thinking about you guys all the time, and continuing to pray. I wish all the support from friends and family could ease your fear and anxiety, but it’s understandable that it can’t. Peace be with you. Miss you! ~Kelly
Carrie, It’s okay to vent on these pages because those of us who follow Hannah’s journey are praying not only for her, but for all of you. It’s hard to imagine what you have to go through every day, and how you manage to cope with it. Let us bear some of the burden through our prayers and concern.
Ann
Oh Carrie, I was hoping your “silence” didn’t mean that. It brings tears to my eyes and I can only imagine your pain and despair. Hannah has touched my heart so so very much. I love that little girl! I still talk about her to different people and update my friend Frankie in Maryland … God bless you and your family. I wish there was something I could do.
Carrie,
Reading your blog today just “TUGS AT MY HEART”!! I wish that I could take away the pain that you and Bobby and family go through on a daily basis. I pray for some kinda miracle that all of this could just go away. My thoughts and love and prayers go out to all of you especially little Hannah. Hang in there Carrie, you are an amazing mom!
Susan
Carrie,
I am sorry you and Hannah and your family are going through this. I wish so much that I had a way to fix this; I know, it sounds stupid, but I wish that.
connie
My sweet sweet Ostreas! Reading your blog truly broke my heart! I don’t think you know the impact that your family has had on me and continues to have. I miss seeing y’all every week. Hannah girl is such a fighter, and you are such an amazing momma! We pray for y’all daily and will continue to do so. Tell the kids I said hi and that I miss them to pieces! ~ Jenny