It as been awhile since I pulled an allnighter. Hannah is finally asleep – she was uncomfortable all night.
The time gave me the opportunity to play with plugin apps for this site. I think I figured out how to link updates to Facebook. Let’s see if this worked.
Hannah had som phenobarbital and is finally asleep. I’m right behind her – good night.
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.
Riding the Wave
Grief comes and goes
like waves in the ocean.
There will be stormy times….
there will be calm times….
Grief comes and goes.
Welcome to allysonbrown.com – I thought it was time to separate my thoughts and writings that I usually muse on Caringbridge to a separate site. I’ll continue to update the Caringbridge site for Hannah with medical and health issues, but I will now focus writing about our broader life here. Please feel free to follow this site and the Caringbridge if you like.
Writing has been so therapeutic for me – I always loved writing, but with the challenges facing our family over the past few years, it has been an outlet that provides so much to me.
I am working on what life in the future will look like for me. I know that my role as mom, wife and friend are most critical. I also know that my professional self is a significant part of who I am. I realize that life is truly like riding a wave – the waves come and go, and we can either succumb to their forces and drown, or learn to read and ride. That is my choice – to ride the wave. Thank you for all of your support.
Overview
When you play in the ocean, you learn that you have two options – you either ride the wave and approach the power of nature with humility, patience and confidence, or you drown. So it is with our story of Hannah’s life.
We have learned to ride the wave that for us presented itself as an undiagnosed metabolic condition, beginning with seizures and code blue at 4 hours after birth, to over a year of continued daily challenges, vigilance and what feels like insurmountable obstacles. We know that Hannah’s life most likely will be a short one – her encephalopathy and degeneration are constant reminders that our beautiful daughter won’t get better.
Yet what we know now as a family (and each of us individually), is that it is possible to find joy in these waves. Each day we wake, not knowing if we’ll have a calm, smooth day or a day filled with gale-force winds. We have found that no matter what, if you can let go of the need for planning and structure and just be flexible, life will be okay.
This “Riding the Wave” project is my opportunity to tell the story of our lives so as to help others. Originally started as a Caring Bridge blog, my hope is to bring these thoughts and experiences to a much broader audience, and in turn help organizations that have given us so much support during this process a tool to tell both their story and amazing impact on our lives.