Our Fight against Gaucher's Disease type 2 or 3
Thanks to a wonderful blog reader, I now have the actual clip of the NBC news piece that was done on Hannah on Thanksgiving. It includes the promos and teasers that were also played during the day (at the beginning).
Also, Mitch, the wonderfully caring man instrumental in getting us this interview and helping us promote World Rare Disease Day in February, got NBC 3 to put the separate clip on their website. I like the heading – Little Miss Hannah Will Make You Smile.
I’m having a really rough night tonight.
It seems like so many things are setting off the tears tonight. This is hell.
I know how hard this has been on Daddy and me. It is like we are stuck in between grieving and fear.
It would be one thing if Hannah was able to be awake and even a little bit aware of anything around her – us, her favorite music, holding on to her little Minnie Mouse. Spending her last days with us knowing that she is surrounded by love. Even just some movement when we talked to her or touch her. The only time she is awake, which is maybe a total of 15 minutes a day now, is her completely out of it. When she is somewhat awake (yet still drugged heavily), we see the tears well up in her eyes and her body twitches — just kills me, and that is our queue to knock her out again.
We don’t even know what that tear means, whether it is a reaction from pain, sadness, or even involuntary. All I know is when we see it, it feels like a knife in our hearts.
We don’t even get a glimpse of our Hannah’s personality. Nothing. I keep hoping and praying that maybe “this time” will be a breakthrough, and I will get some kind of reaction … even a little one. But nothing. It is as if we only get to keep her body with us, not her smile or personality.
And that is what makes this so damn hard. Our family has been grieving for her for weeks now. Just waiting for that moment she stops breathing, so scared for it to come. But knowing that is right around the corner.
We are ready to deal with it. We don’t want to, but we know this is not a life we want for her. No quality of life at all.
It is like our loss is just dangling in front of us – teasing us. Like, “ha ha, I’m going to mess with you.” Because that is what it is – we have lost our Hannah. The beautiful little girl sleeping in front of me is really just a shell of who she was, one whose body is slowly failing. It is still her smell, her feel, but that is all we get now. Sometimes I am so thankful to still be able to cuddle on her and run my fingers through her hair.
But sometimes, as hard as it is to say, sometimes it really just isn’t enough anymore.
And what is even harder to deal with is how it is affecting Ethan and Abby now. Oh gosh, poor Abby. Because she is more aware and dealing with what is going on with Hannah than Ethan (who is not really dealing with it at all yet), it really is affecting her in so many ways. School, social activities, life at home…
Seriously, they are living their lives with their dying sister in the family room, also just waiting for her to let go, yet probably not really knowing how this will affect them. Yet, we still watch TV, have meals together, do homework in the same room as her…keep going on with our daily lives. How do they process all of this?! Our hospice social worker meets with the kids each week, but I think this is so much bigger than just this.
Then I feel so incredibly guilty for feeling this way. This is my Hannah. This is my baby daughter, my miracle. This is all I have left of her yet I complain about how hard it is on me and the rest of us. What about her?
Damn, I miss her so much. She’s here, I know. But she isn’t really here anymore. I miss her, and I would do anything for just something – a smile, just something to let me know she is still here with me.
I’ve got such a headache. I am going to crawl into bed with Hannah and snuggle with her. Maybe, maybe by some miracle, tonight I will get a glimpse of my Hannah.
Yeah, right. Probably not.
The NBC 3 news piece is now online.
I’m not sure how to copy it on here because it is actually the entire 30-minute broadcast, but Hannah’s piece starts about 9:20 minute mark or so. She is also the beginning teaser of the newscast.
If someone knows how to take this off their website and chop it down so we can upload it to YouTube, I would be very grateful. I don’t know how long it will be on their website. It is the 11/24, News at 5 pm broadcast. Here is the link.
Ugh, last year I loved Black Friday shopping. Granted, I did all of it from the comfort of my jammies and computer, but I was counting down the minutes until the sales started and even had my lists ready to go. I must have done about 75% of all my shopping that night.
Just a day ago, Black Friday started online at some of my favorite stores. I had no lists this time. I had an idea of what to get the kids — well, Abby and Ethan…bought them a few things in between taking care of Hannah, getting her meds, moving her body so she doesn’t get tight, making sure her oxygen and humidification stays on her. Definitely a different experience than last year.
And that is the hard part. What do we do about gifts for Hannah this holiday? Daddy and I have talked and talked and talked about it so much. You see, my kids are incredibly spoiled — they get Hanukkah AND Santa gifts (and yes, Ethan and Abby both still believe in Santa).
Hanukkah is easier to deal with. We already explained to the kids that we are just going to get Hannah one special gift instead of the 8 little ones since she can’t really enjoy toys or her iPad anymore. They understood why.
Santa. That is a different story. It stresses me out to think how to deal with the Santa situation. What does Santa do for kids like Hannah? He wouldn’t ignore them or forget them…
I asked Abby this question yesterday. We were talking about Santa, and I was cuddling with Hannah on the couch, and Abby came up to give her kisses. I didn’t ask it in a serious way, I just asked her matter-of-factly… “What do you think Santa does for kids like Hannah?” She thought about it for a minute, and she came up with a perfect answer.
She said that because Hannah can’t play with toys anymore, he will probably get her a stuffed animal with a big heart that says ‘love you’ with a special note attached to it.
My heart melted…and then felt crushed. So many, many different emotions from Abby’s response – so proud of her for really understanding the situation, then so sad because she does understand the situation.
Then I kept thinking … is Hannah even going to make it through the holidays this year? We thought we were only going to have days with her when we started with hospice…6 weeks ago.
Six long weeks ago. We have been living like this, this uncertainty, this exhaustion, this sadness, this continuous apprehensive grieving, this just overwhelming situation…six weeks. Wondering every day if she will be here tomorrow.
Wondering if it is safe to buy her something for the holidays because that is still a long 4 weeks a way. Four weeks doesn’t seem like a long time, but in this situation, it seems like a lifetime.
I did buy one present for Hannah last night. It was this cute little personalized rag doll that will be embroidered with Hannah’s name on it. Daddy and I feel like Santa would get Hannah a lot of personalized and keepsake items — things that we would be able to keep to remind us of her all the time, whether it is Disney, ladybugs, monkeys, music, poems about how special she is, pictures, etc.
Whether or not Hannah is still with us on Christmas Day, this little rag doll with get a lot of loving. I can just picture this little doll ending up on Abby’s bed every night, making its home with the other beloved stuffed animals and dolls she has.
That is the best gift I can give Hannah. I hope it comes soon. I would love to take a picture of Hannah with this doll.
At least I have a direction now to shop for Hannah. I’m going to stop for things that will remind me of her for the rest of my life. I just found a cute little Minnie ornament from Disney Store that I just ordered a few minutes ago that I will likely personalize myself when it comes.
Hannah is sleeping peacefully right now. The combination of Valium-Methadone-Klonopin-Baclofen-Tegretol and chloral hydrate when needed is starting to work to keep her comfortable. We are down to using the chloral just a few times a day now instead of every 4 hours on the dot. We may need to up her valium a bit because it is wearing off before the 6 hours are up, but at least that is something that is doable.
I love the way her face looks when she is sleeping. So sweet, so angelic. During the night, I spend hours just laying next to her caressing her face and body, combing my fingers through her gorgeous hair.
I think of just how amazing she is and how much beauty and happiness she has brought into my life. How much she has opened my eyes to some wonderful feelings, insights into life, and how many thousands of times she has warmed my heart and made me smile.
She is the missing piece I didn’t realize I needed to complete our family and makes me understand what pure love is.
One of my biggest fears has always been that, in time, Hannah will be forgotten. I know that Daddy, Ethan, Abby, and I will never forget her, but that others in our lives will. Family members you don’t see that often, friends you chat with every once in a great while…those that really never got to know Hannah personally. I don’t want them ever to forget her and how important my little daughter is to me and our family.
I think because of Hannah, I have found what I want to do with the rest of my life. She has thrown me into this world of rare disease, advocating families, special needs, etc. Through all of this, I know what I am meant to do.
So these past few weeks, Daddy and I have started to put together the paperwork for our Little Miss Hannah Foundation. Yes, we are finally going to do it (many of you know we have been talking about it for almost two years). I have been working on our mission and our general focus which, in summary, is working with directly with families affected by childhood life-limiting rare diseases by providing one-on-one support and guidance, local support groups, as well as a strong emphasis on sibling support and attention services (of which are horribly lacking).
We are so fortunately that Dr. Bernstein’s office manager (who was instrumental in putting together an amazing World Rare Disease Day event in their office this year) is willing to help guide us with the paperwork so we can get our 501c3 nonprofit status. I have also had the support of some wonderful and talented friends who have offered to help as well.
This also works with my personal plan so when I finish my Masters in Professional Counseling that I could focus on using my experiences towards being a medical family therapist here in town. When I started my masters earlier this year, I didn’t know what exactly I wanted to do with the degree (which at the time was the generic healthcare administration), but I know I wanted to stay in the medical world.
But this recent turn of events this month really opened my eyes as to what I want…what I need to be doing with my life, and this has given Daddy and I something to focus on these past months instead of just wallowing in our sadness.
I want the world to know that I have a beautiful little girl named Hannah. She is an amazing fighter, a charming and sweet soul, and she means more than the world to me. I want the world to know how special she is…I would scream it from the rooftops if I could.
I don’t want her ever to be forgotten…not for a second. With this legacy we are creating for her, I hope she never will…and that her sweet face will be forever in the minds of our family and friends today and those families we meet in the future.
Hannah deserves it.
My sleeping beauty on KSNV's 5 pm newscast tonight - our local NBC Channel 3 station
We were given an opportunity a couple of days ago to share Hannah’s story with our local NBC news station and why it is so dang important that there is more research into rare diseases like Gaucher’s disease. Even though I wasn’t in a good mental place to be interviewed, I knew it was important that I show the world why Hannah deserves to be fought for, every day and minute of her life.
The piece aired yesterday, Thanksgiving, on their 5 pm broadcast. I will admit, I found it weird seeing myself as the news teaser earlier in the day. We were sitting watching Judge Judy (knowing the news would be on soon), and there I popped up during the commercials. Just a weird feeling.
It was a really good piece, I think. Denise Rosch, the reporter, really hit on many of the key points we talked about. They also interviewed Hannah’s Cerezyme nurse, whom we love, for the piece as well. My only disappointment was that they didn’t mention the foundation that we are going to be starting up. But overall, this was definitely a piece that showed why Hannah deserved to be fought for and why other children, like Hannah, deserve a fighting chance as well.
The news clip hasn’t been put on their website yet, but they do have us listed as one of their useful links. Hopefully they will get it on today so we can post it. Otherwise, we will just take a home video of the TV so we can share it with all of you.
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