Sweet Hannah’s little body is failing. She can’t empty her bladder any longer, and while we wish and hope it is a short-term problem, the reality is that it is likely further nerve issues caused by her underlying (and still unknown) condition.
Today I cried. A lot. I cried when they put in the catheter to give her severely distended belly some much-needed relief. I cried when I held my baby, soaking her curls in salty drops that are still crunchy this evening when I kiss her over and over again. I cried when I thought about my life – our life – never being the same again. I cried when I thought of Wes, and his lifetime of people asking if he had any siblings, and him saying in a quick sentence, “I did, but my sister died as a baby”. At some point, it will be summed up as simple as that.
I can’t stop thinking about the big hole I already feel. I know that this is nothing compared to what will happen when she is actually gone. My life the past 2 years has been centered around her. First my pregnancy, then the four hours of bliss with our new, healthy baby, then the mom of a child we have been fighting fiercely to heal. Now it is centered on a dying child, and soon to be centered on grieving the loss of a baby. Our baby. What will I do?
I just spent the past few hours looking at blog after blog of parents that have lost children. I ordered a handful of books from Amazon.com that are supposed to be the best, written by parents like us. I found “the Healing Center”, one of the best community support resources for grieving families, which just happens to be about 5 blocks from our home (I’ve walked by it a bunch of times and didn’t even know it was there). I even wrote a draft of Hannah’s obituary, since I know that I won’t be able to do this when the time actually comes.
The best part of today, besides holding my sweet one, was going for a walk with Wesley in our neighborhood. We talked at first about Hannah. I told him what was going on with her, and that her little body wasn’t working very well and it might not be too long before she goes to heaven. He always chuckles when he talks about heaven, and he said this time, “mom, I bet she’ll be like 19 when we meet her there”. He then said, “I won’t be going until I’m at least 109”. I agreed. We talked about it for a few minutes longer, then he said, “mom, I don’t want to talk about this any more right now.” I agreed.
We then spent the rest of our walk looking for signs of spring. We saw trees beginning to bud new leaves; we saw beautiful daffodils stretching past the dead leaves covering the ground; we saw narcissus and crocus clustered in little bundles. We found so many beautiful signs that new life is fighting off this cold, cold winter here. We laughed about people wearing swimsuits in Chicago today because of the early heat wave there (“just two hours away on a plane, mama!” Wes joyfully announced).
Wes taught me in a few minutes how to shift from death to life. Thank you, Wes. And Hannah, each tear today is but one of the countless to come in honor of you.
I woke up and noticed the light flashing on my phone. I then saw it was a post from you so I got up to read it. That was an hour ago and now it’s about 2:15 am. I’ve been sitting here in the quiet of the living room and thinking of you, Greg, Wes and the countless number of people whose life Hannah has touch in such a short amount of time. Through my own tears, I couldn’t help but smile because I could picture your walk with Wes and hear the conversation you two had. The way he talks, walks and laughs. As he continues to teach us about life, so does Hannah. She truly is an amazing little girl. An Angel. All of my love and thoughts are with you.
Love,
Janet
My heart aches for you all. Thank you so much for your blog. As much as it hurts, it is wonderful. The healing is already beginning…
Hi Allyson,
Thinking of you. Just heartbreaking. It is the worst. Kindergartners have a lovely way (and demanding in a good way) of making you stay in the moment. It has helped me tremendously. Thanks for the info about the Healing Center, they also had some good web links I hadn’t seen. Sending you and your family light and love.
Theresa
Thank you Allyson for sharing the full spectrum. Signs of Spring! You are all on my prayer list.