What We Are Waiting For

First off, I want to say Hana’s surprise has been delayed again and now we are looking at Friday of this week or Monday.

Second, Hana is doing great! She’s not puking too much, her vitals are stable and we are just working on getting some of her transplant blood work repeated since some of it was done a year ago. She seems to be fairly on track with her developmental milestones other than eating. Her walking is actually shakier than when she was at home and I attribute that to the pump and drive line always being in her way. Some development will be delayed and that’s just the way it is. We are working on independent play skills and sensory learning since that’s where I can actually do something to change what is.

We are settled, as best as we can, in this “camping” mode in a child’s room which is inside a hospital. I still get a bit frustrated at our loss of autonomy and independence, especially when it comes to Hana’s care. At home, I was always tweaking things in order to optimize outcomes for her – such as when to give meds or tube feeds so she doesn’t feel sick or tied down and she gets the maximum amount of normal kid activity and sleep as possible. I was particular, maybe even meticulous. I do my best here but it can be challenging. I get frustrated when people get bent out of shape because they see me whiz down the hallway carrying Hana, pushing the 200 pound Berlin Heart Ikus with a backpack of activities and we are on our way to the seating area on the third floor for a change of scenery. The get bent out of shape because they can’t fathom all that being manageable. Just because they imagine it being hard for them does not mean it is hard for me. It may require a lot of effort, but that doesn’t make it hard or even unsafe. I don’t want to be limited by others’ limiting beliefs. I can be very stubborn that way, but please don’t tell me what is not possible just because you cannot imagine the possibilities. This is the hardest part of living in a hospital (in our current situation).

But. Yes, there is that. I busy myself creating as much of a normal childhood for Hana as possible and maybe that is because I want to enjoy the break from worry and high stress that will come when she has her heart transplant. I know that day must come and hopefully soon. But it is a hard thing to hope for. In order for Hana to live, another child must die. And although that child is not dying so Hana can live and they would have died either way, still, it is the death of a child that will save Hana. Somewhere in the western United States a child is living and breathing tonight who one day, relatively  soon, will not be, and Hana will get his or her heart. So, to hope for this day to come soon is hard to wish. But the day is coming with or without my hope and what I tell myself is that we hope Hana gets matched with an available heart soon. But still.

Forever, as long as I can make that stretch, I will be full of gratitude for the family of that child and the child whose heart will become Hana’s. Thank you for the honor with such a precious gift.

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10 thoughts on “What We Are Waiting For

  1. She is so beautiful and you are such a wonderful mother. I do understand your feeling of sadness for the other child and their family, but as you said, the child is not dying for Hana but giving her life. What a wonderful gift and the chance for part of that child to live on in Hana. I think of you daily and pray every day that a transplant will be available soon and you all will return to a more normal life. Sending best wishes.

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  2. I am so moved by the way you describe your fight to make Hana’s everyday life as full of possibilities and growth opportunities as you can…even in the face of struggle and opposition. It’s amazing how motherhood brings out the fighter in us, isn’t it? That is so wonderful that she is still meeting her milestones! What a sign of her strength and resilience. Big cheers for Hana!
    And I don’t know if this makes you feel better….I don’t have a sick child, but if something were to happen to one of mine, something tragic and fatal, it would TRULY lift my spirit to know that another child could survive because of my loss. It would feel like my child was living on, still here on earth with me. I have never spoken about this with anyone who has lost a child. I can only speculate that it would give me comfort in a time of immense grief. I hope that helps just a little to ease the burden of guilt you feel. But I’m sure many things weigh so heavily upon you that only someone who has been there could understand.
    God bless you, Hana, your family and all the people who take care of her ♡

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  3. The way I look at it is that organ donors provide a gift of LIFE. Even when a parent has to make that decision for their child. I am an organ donor but I’m not sure they would use my old worn out parts anymore for anything other than research, which is also fine. If they can learn from that in order to help someone else, that’s fine with me. ( I’m already a living “lab rat” may as well continue that after I’m gone!)

    I can’t fathom folks getting bent out of shape seeing you whiz down the hall with Hana and her machines! Guess they haven’t been reading this blog all along to know that is exactly what you would do for Hana!!! I can picture you doing that and it doesn’t surprise me in the least!! Bet these folks learn to step out of the way when they see you and Hana coming down the hall. LOL

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  4. Very deep but true. Love the pic of Hana at the end. Sums it up very well. Last thing, remember that child will always live in Hana or thru Hana BC she has their Heart. Its believed in many cultures that the Heart is the seat of consciousness and the very center of life. A beautiful thought and a comfort for you and the donor family.

    Continued prayers and blessings,
    Nurse Kisha

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  5. Despite her limitations, Hana exudes pure joy, happiness, and beauty. She seems such a loving child. God bless Hana. And Kathleen, you are a magnificent mother. God bless your family.

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  6. Kathleen, you are an incredible mother and I am inspired by your strength and resilience. My thoughts and prayers are with you and Hana. Our Blessed Mother knows your inner feelings and fears because she lived them too. My prayers are to ask her to wrap Hana and Hana’s future donor in her mantle and hold them both close to her heart so they can feel her true mother’s love for them both.

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  7. Dear Kathleen,
    Reading your blog today ripped at my heart, for you and your husband, for Hanna, for the future donor and that family. Although it is painful it is wonderful to know you have such deep appreciation and respect for what will one day take place. Please know you are in many people’s prayers……our Father hears each one and He knows all you and all parties involved are and will be struggling with. You have been amazing through all of this. God bless.

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  8. I love Hana’s beautiful smile and spirit! Your love and compassion shine through in each and every blog you send. Just know that you, Hana, and Paul are in our hearts and prayers as you go through this challenging time.
    With huge love,
    Abby

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