Hannah’s breathing continues to become more shallow each day. She is starting to tolerate her feeds less so we have started decreasing her caloric intake (down about 15% from her normal – not doing a Terri Shiavo). She is requiring daily enemas to keep her body moving so her stomach doesn’t continue to become distended and uncomfortable.
She is waking up every couple of hours or so. Most of the time, she is immediately agitated and her body becomes spastic and her apneic spells become more pronounced.
On a few occasions, her body is calm, which I treasure because I lay down next to her on her bed, cuddle next to her, and just gaze into her eyes while I stroke her hair. I don’t know if she can see anymore, but I position myself so that if she can see me, she sees me gazing into her eyes like we have done so many times over her short three years.
What gets me is when she is awake, starting to get agitated, and then I see the tears start forming in her eyes. Kills me. I don’t know if it is from pain, agitation, or just a involuntary reaction, but that is our cue to re-sedate her.
I can’t believe where I am in my life right now. I am basically waiting for my daughter to die. Even seeing the words is so surreal, like it isn’t really happening to me.
But it is. I am constantly looking over at her and making sure she is still breathing. Even now, just 10 feet away from me, I am straining to make sure I see the rise and fall of her chest so I know that she is still with us.
When I see the tears and the agitation, I let her know it is okay to let go…that we will always love her…and that it is time for her to be free and out of pain, time for her to explore her world outside of the jail that is her broken body. I just want her to know that it is okay.
But then when she is peacefully sleeping, and I get to be with her and cuddle her, smell her, run my fingers through her hair, and massage her body, I tell myself I am not ready to let her go. Even now, knowing what her condition is, I am so sad because I don’t want to lose her. I know that she can’t stay like this forever, but I’m just not ready for her to go.
I’m just not ready for her to go. I know it is selfish. But I know I’m going to lose her in a short time, whether it is days or weeks. I don’t think it is fair.
What did we do that was so terrible that she has to suffer like this? Am I being punished for something I did in my life? Why after so many years of failed infertility attempts and multiple miscarriages was I blessed to naturally conceive and give birth to her — only to have her so ruthlessly taken away from me?
She never got a break! From her second day of life, we were dealing with medical issues — ones that seem so benign now but seemed overwhelming even in her first year. She has brought so much happiness and love into my life, more than I ever thought was possible. Even through the years, the disabilities, the hospitalizations — she pulled through with such a spirit that was just awe-inspiring. Why does she have to suffer so much now?
Why does she have to suffer like this? Why do I have to lose her? How are Ethan and Abby going to handle all of this? Daddy? How am I going to survive this? My body is physically aching right now just thinking about this.
Pain-free and happy. That was always our goal for her life. But I feel like we have failed miserably with this over the past couple of months. Yet, I know the only way for her to get back to that state is for her to let go and for us to have to say goodbye.
Even though I told her it is okay to let go, I don’t want to say good-bye. I’m not ready. I’m not.
Thinking of you so much Carrie.
You are doing the hardest thing any mother has to do. It isn’t fair, it is damn wrong. Would make me question my own faith in God because she doesn’t deserve this. You’re right. Doesn’t make any sense from here, either, the cheap seats where I don’t have to see it all first hand. If “all things happen for a reason”, well, I can’t imagine the reason for so much suffering.
Thinking of Hannah, the giggling little miss I fell in love with three years ago as I watched her and her mama on their blog. Ridiculously unfair, but MAMA, you’ve put up one HELL of a fight.
I am keeping you in prayer. When people tritely say, “all things happen for a reason”, they haven’t walked where you’re walking. Some things are totally senseless, and Hannah’s life of pain and suffering make that clear. What is evident to me in this blog is that your terrible pain is grounded in absolute love for that precious baby.
Carolyn (in Las Vegas)
There’s no way you could ever be ready or “okay” with losing your beautiful baby girl, Carrie. And the whys? Please try not to search for answers because there are none. No one deserves to lose a child or see their child deteriorate as you and Robert have. It’s not a punishment…it just is. You know how I know it’s not a punishment? Because, while you’re in the throes of the hardest thing any parent could ever imagine enduring, you have latched onto the seed of promise. Your plans for a foundation. Your activism. Your research. Your outreach into the world of children with rare diseases. Hannah woke that in you — among so many other things. Hannah’s reality isn’t karma. But Hannah’s impact — the good that her existence will bring, through your efforts — will be.
Your family is in my prayers every day.
Praying for you and your family! A quote that a friend lived by while her son battled cancer for 18 months, ‘I trust in the Lord not because I believe He will heal. I trust in the Lord because I know He can heal, and even if He chooses not to, He is still GOD!’
My heart is heavy to know that this is your reality. I cannot begin to imagine the strength you have to find to get through every day. My prayers go out to you and your family and I hope that this beautiful miracle baby gets stronger…I also pray that should that not be in God’s master plan that he provides you with the strength and comfort and peace in knowing that while it is not easy or acceptable in your eyes, it is His will. He is a loving God and it may be so hard to see this now but this is not a punishment. There is nothing, NOTHING that you could have ever done to deserve this. Take this time for what is is, Precious. Breathe her in..my thoughts and prayers are with you xoxo
Word’s cannot express what I feel and think about what you are going through. My sweet Emilka died on 17th of June this year, so I think I can imagine how you feel loosing your Hannah every day. I hope one day we will meet altogether in Heaven and these sad days will be only a fading memory…
Oh, Carrie, it is so unfair that you are faced with losing Hannah. You, Robert, Ethan and Abby absolutely deserved to find each other, and be blessed with Hannah and all of the miracles and smiles and happiness she’s brought to your life. Hannah deserveD to be born into your wonderful family who haVE surrounded her with love every day of her life. I can’t explain the rest, because the hurt and pain isn’t something any of you deserves. But I know you and Hannah and the rest of your family all deserve to be blessed with one another. She deserves comfort and love, and she’s always been surrounded by it because you are her family. Nothing else about it makes sense, but those are the things I know for sure. My love and prayers are with all of you.
Carrie – You are so amazing. You are doing the most unnatural thing right now and making the most terrible decisions any mother would have to make. But you are doing it all with grace, dignity and selflessness that is awe inspiring. Your questions so deserve an answer, I wish I could help you find them. Sadly as the mom of a child with any disease we learn (though never accept) that we will NEVER get the answers we deserve. Hannah is an angel here or in heaven and she will forever be your baby and deeply embedded in your heart and soul and home. And Abby and Ethan will never forget her. They will carry her beauty with them forever and teach their children the importance of children with handicaps, how truly special these babies are. I know that because my mother lost her brother to a very rare genetic disorder in 1954 and Eugene is still very much alive in her heart and she taught my brothers and I all about acceptance and tolerance and love of these wonderful kids.
We only spoke (via email) once, but you and Hannah have been with me through the years. I even included you in my NGF fundraising letter for the auction last month. Yes, my daughter has Type 1 Gaucher. But your daughter and children like her are why it is so important that we find a cure.
My heart, my prayers and my love are with you.
Randi
Carrie, you did nothing wrong. You did everything you had to do and you had a baby girl who has filled your life with song. She is secure where she is, and when she leaves, there will be grief but there will be joy that she is delivered from the pain that she has suffered here on earth. She taught you that in medicine what’s right for one is not right for all. She has taught you to fight for her rights as a person. She has taught you that life is not all sunbeams and lollipops, it’s nights in the ICU, it’s hours in the MRI, it’s countless hours counting the breaths of your child.
You and Robert have walked a journey that others are just now beginning. Your creation of a foundation to assist other parents will be a beacon of hope to them. As you learned with Hannah, they too will be assisted by your knowledge.
Continue to talk to her, snuggle with her, whisper secrets that only she will ever hear, and continue to live your life. Hannah and you have a purpose.
Psalm 31:3-5
For you are my rock and my fortress;
and for your name’s sake you lead me and guide me;
4you take me out of the net they have hidden for me,
for you are my refuge.
5 Into your hand I commit my spirit;
you have redeemed me, O LORD, faithful God.
Ever since my brother passed, I have battled with the “why?”. I still don’t have any kind of answer but I get sick of people saying God needed him in heaven, even though I know that they want to help… the truth is my mom and dad and all of us needed him here on earth. I am so sorry that this is happening to you and my prayers are with you always….
Oh Carrie, I am so sorry for all of this. I am so sorry that Hannah is slipping away even if it is to a more comfortbale place. You are all constantly in my prayers.
NO WORDS
; ~ (
Carrie, this situation just plain sucks, and you have every right to be sad/mad about it. If I learned one thing through our ordeal with Alex, it’s that your feelings are valid, no matter what they are. There is no right or wrong way to grieve, no matter what some might say. Just keep doing what you’ve been doing, surrounding Hannah with as much love as you can. And we’ll all support you in that.
What Sarah said. There is are no answers to your questions. And you are certainly entitled to your feelings and I don’t mean that in the trite way. I know I personally wanted to punch a nun at St. Rose who asked me if I ever prayed (in a tone I took to mean, “maybe that’s why your daughter is dying.”) Some people find comfort in God during times like this and others find the idea of God completely offensive. Whatever you feel is fine and you certainly don’t have to be brave and strong and you don’t have to live your life as if you or she HAS to make a difference simply because she was born with this condition. You don’t have to find meaning in this anytime soon. Just enjoy your final times with her. You are always in my thoughts.
She is a gift from God to you, and you are a gift from God to her. You have each other right now, for however long, in this physical realm. She is showing you your ability to love, cherish and adore another person in your life – that your heart is truly big enough to include more (and all). You are showing her in these precious moments that she is fully loved, adored and cared for. It’s a beautiful opportunity for both of you and it sounds like you both are living it fully and embracing it, regardless of how painful it is.
Furthermore, by you sharing your experiences here in this blog, you are opening other people’s hearts and proving that unconditional love is truly the thing that matters in this world.
Much Love & Light to you both.