For the past 36 hours, Hannah has had these weird mini episodes when she was awake. Up until this afternoon, I just chalked it up to a weird form of agitation, but after thinking about it more (and having her nurse and Daddy notice it to), we now think it is more.
She would wake up and be somewhat agitated. She was fuss, her movements would be going, and you could see the stress in her face. Then for a few seconds at a time, she would completely stop – body stops moving completely, eyes wide open and straight ahead, and she would stop breathing. Then as quickly as it came, it was gone again and she would be back to being agitated again.
It started happening more this evening, to the point these episodes were happening every 10 to 20 seconds and lasting a few seconds at a time. At first, I thought it could be absence seizures (knowing that uncontrollable seizures are common at this stage of the disease). But then I looked up absence seizures on youtube (thank goodness for youtube), and I realize that those are not the same thing as what we are seeing.
I called Dr. Goker-Alpan this evening on her cell to get her advice. I explained what was happening, and she said that this was likely apneic episodes. She made the comment that “we need to decide what we want to do with regards to a vent,” because this was the time that if we were going to put her on a breathing machine to do it. I told her Daddy and I already made the decision not to hook her up to a vent.
She then explained that this is the advanced end-stage of the disease process. That the apneic spells would likely be longer in duration. Eventually, she will likely have an apneic spell and just not come out of it.
She made the comment that it would be peaceful and not painful when it happens.
After I got off the phone with her, I left Hannah with Daddy and our nurse and just went into our bedroom and lost it. A million thoughts went through my mind so quickly …
- Were we making the right decision to not vent her? But she has so little quality of life now that I feel it would just be selfish — but at least she would still be here longer for me to love on her. But that is not fair to her.
- How much more time do we have left with her?
- Will I be home when it happens?
- Do I need to stay home every moment now just to be sure I am here when it happens?
- What will it look like when it happens? Will she have one of these apneic spells when she is awake or will she pass in her sleep?
- Why the hell is this happening to her? Could someone have made a mistake?
- How will our family survive? How will *I* survive?
I will admit it. I am scared. I am scared of seeing her pass away in front of me, but I also want to be here when she does. I want to be holding her when it happens.
I am scared to lose her. I can’t imagine my life without her now. Three years is just not long enough.
Why do I have to lose her after fighting so hard for her?
How will I live without her?
My heart aches for you.
My heart is breaking for you, Carrie. Still sending much love and light.
Love you so much Carrie – my heart is breaking for you. Wish I could be there to hug you in person. Still sending all my strength.
I am so very sorry this is happening. I wish I could give you answers so you would have some peace. I am praying for peace and for strength and for all of your hearts.
Prayers, hugs, kisses and love from Jenny
We add our prayers to all that pray for you and yours. I pray that all of your needs will be met by our Great Physician. Amen
Carrie, my heart is breaking for precious Hannah and for you. I am so sorry that you have to go through this. My thoughts, prayers and love are with you
There are absolutely no words to take away your pain, Carrie. I am sorry…
All that I can think to say is that, from following your journey from afar, you have done everything that you can possibly do to give your child the best life possible, given the hand she was dealt. That is what a mother does, and you have been — and continue to be — the best mother that Hannah could possibly have. That may not give you comfort now, but perhaps it will one day.
Praying for all of you always.
Oh, Carrie. {{{HUGS}}} I wish I could take away the pain and the fear. Sending prayers and love.
There will always be doubts. There will always be fear. Your love for her will never fade and she will live forever in the memory of all who know you and all who have had a chance to know what an amazing family Hannah has. She is such an amazing little girl and she and you are heroes to many people!
The time will come when she takes her last breath and no words or preparation of any form can really prepare you for that.
I hope you see what a world of support you have and that it is SO OK to cry, to be uncertain, to be angry or to be whatever you need to be!
We all love her and love you and pray for peace in your lives.
Carrie,
Its ok to go thru these feelings of being afraid of not being there when Hannah needs you or if you are not there when she leaves you. She will always know how much her mommy loves her and how much you have done for her.
You are an amazing person Carrie and I admire you so much and you are such an inspirition to all moms, so dont you ever forget that!
Our thoughts and prayers are always with you all.
Love,
Susan
Lots of love to you all Carrie. I wish I could tell you something to make it better. We don’t like to use the word “fair” in our house because so much of what happened to Cooper was not fair at all. And I didn’t know if I would survive losing him. But somehow, I have. I don’t know how, but you do. One day at a time. Sometimes, one minute at a time. Your other kids will be your reasons to keep going each day. I am here for you anytime, Carrie.
Sarah
Dear Carrie,
I have just found and read through the story of little Hannah today for the first time. The impression I got is that everything you do is full of love, everything you do is ready to sacrifice all for your little girl. You are a perfect mommy!
Hannah is indeed beautiful and I wish she could stay with you and your family and you could enjoy seeing her grow up. It must have been heartbreaking to realize that such can not happen. It is beautiful that you did everything to make the best out of the time you are allowed together.
I would definitely be with her during her last phase, which is now. I would move my bed beside hers and hold her hand or at least touch her little hand. She may not be able to see or react, but she may sense your warmth and love. If I were you I would want to be with her during her last moments here on Earth. It may be important for you to feel the peace in the second when the inevitable happens.
I don’t know if you would sense to see a bit of light or not, but you will feel a sense of peace and love along with the deepest sadness ever. Talk to her, her spirit may spend a few moments in the room before going to heaven.
How you will survive? It will be very difficult at first. You may lose your appetite and feel that nothing is important nothing worth anything. Everything you look at will remind you of your little Hannah and will likely to bring tears to your eyes. It may lasts for weeks and is a process, generally what people call mourning. The pain that feels like a huge potato in your throat and a heavy stone in your heart will take time to slowly ease. It is good to cry, cry as much as you feel you need. It may be almost like ‘crying out the pain’. Then you will start to be able to think of the wonderful moments you had with her while she was around. Slowly the love will overtake your heart again.
I had the nearest person to me who died, whom I with all my heart wanted to save, and did all I could, but knew from the first moment that it was in vain. Still I haven’t given up and did just as I read that you did with little Hannah. I have never for a second regretted the time I spent with her and I am grateful for all the moments we had together. It has been now three years, but it feels as if it had happened just yesterday. The memories have stayed vivid and the love real and it seems also eternal.
We are with you in thoughts and prayers.
Love,
Anna
I’m so sorry. Just praying for you and little Hannah.
Carrie, I can not imagine having to go through what you and your family are going through. I have kept up on Hannah for 2+ years and I have so much love for her and your family. She is the bravest little fighter I have ever seen. My heart will ache along with all of you when this little angel is no longer here. I wish I could be right beside you to give you hugs and comfort. Thank you for publishing her story for all to read, and introducing me to you daughter, whose pictures have brought me many smiles. God Bless Hannah and all of your family. Much love and light to you.
(((HUGS)))