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.
You are amazing Carrie, truly amazing 🙂 If there is anything you need, ever and for anything but particularly counseling related, just let me know.
Hannah will always be in my heart. I don’t think anyone will ever forget her, or the impact she has made. But… I am so glad to see you move forward with the foundation. Anything I can do…just let me know.
Dear Carrie ~
You are such an amazing lady! Your precious Hannah will always hold a special spot in my heart. I’ve lost a daughter suddenly in an auto accident now 23 years ago this past Oct 1st. The sting of missing her is always there….and like you, the desire to have others remember her after this long remains deep in my heart. We still get remembrances in such unique ways…someone will post her picture on their Facebook account, one of my other daughters or I will receive a beautiful bouquet on the day we lost her, I received a lovely photo album just a few years ago from her Brownie leader with photos of her. A very special event was the birth of one of our granddaughters on Oct 1st one year so we have a bittersweet day but one filled with loving thoughts either way. I’m sure so many will hold your daughter close in their hearts forever and she will be spoken about from generation to generation for her special smile and love she brought to many as she fought her brave battle….some of us who have never met her or your family, but care deeply. What a wonderful gift in her honor you are doing and such a compassionate way to help others.
Prayers as you lay close to her.
Ginger
I may never have met Hannah, but I swear I will never forget her. I think your direction with the foundation as well as with your career is wonderful. I work with many LPCs and have worked in the nonprofit mental health world for well over 20 years, so anything I can do to help long distance would be an honor.
That is awesome, Carrie. That is a wonderful legacy for Hannah and you will be a great voice for the foundation.
I will remember her.
And I’d be honored to lend any skills I have to your efforts. I’ve done medical (consumer) writing. I’m a good editor. I know a bit about how the magazine publishing world. I’ve got some marketing sense. I’m a decent researcher. I want to learn about grant writing.
Use me. Whenever and however you need to.
I’ll remember her too. Any online help I can offer, please let me know. Writing, networking, fundraising…
I will never, ever, forget your precious baby girl and how she has managed to wiggle her way into hearts all over, including mine. She is truly a gift to the world and she was given to the very best family to love her, care for her, learn from her and to help others in her name. *You* are simply amazing for everything you do and everything you will do in the future.
I too join in the chorus – I will remember her and the joy she brought to your family forever. I will remember her as a miracle child who enchanted you and will always wish I had met her. Giving her this as a tribute will help to create meaning in all this senselessness: Congratulations. And I’m sorry it had to be so.
What an amazing legacy for sweet Hannah girl! Anyone who has heard her story will NEVER forget it! I have said it so many times but it is true, she has impacted me in such a lasting way that I can’t describe it. Her personality is joyous, her smile infectious and her sweet face is angelic. I adore that child and always will! I think the career and foundation you are starting are A-M-A-Z-I-N-G! Your personality fits counseling perfectly! Oh to live in the same town again…a girl can dream. Love y’all bunches! Give my sweet Hannah girl, Abby and Ethan big hugs and kisses form Jenny 🙂