This month baby is photographed on Ribbon Floral, my favorite print from Denyse Schmidt's re-released Katie Jump Rope collection through FreeSpirit, available now at Fat Quarter Shop, Fabricworm, Sew Modern and The Intrepid Thread.
I often don't know how to start these updates. Even though I want to keep you all in the loop, it's always hard to choose what to say and what to leave unsaid. You clearly care for all of us, and you've been a big part of helping us get through a terrible year. This Thanksgiving I am grateful for you.
Things are much the same for Eleni since our last update. During the month of November she did enjoy a string of 5 days wherein she seemed well and did not need supplemental oxygen. That was during her ABM therapy trip in Florida. Physical therapy improves her health and her mood. On the drive home though, she came down with a new cold.
Although she is not immune-compromised, Eleni gets sick more than typical babies due to poor sleep quality (from apnea) and frequent aspiration which weakens her lungs. Each illness for Eleni means frequent suctioning to clear her airways, high fevers, a little monitor wrapped around her toe to measure oxygenation and wearing a tube that wraps around her ears and across her face, delivering concentrated oxygen at her nostrils. And it takes her at least two weeks to get through a virus. By now I'm practically a nurse.
I wonder if for me November has been a sort of turning point. There was a two week period when I felt happy again. I felt like myself, and I could joke and smile again from deep inside without a bitterness in my heart. That period began when I let go of any hopes for Eleni during her week of ABM therapy. No longer worrying about what she would or would not learn from those lessons, I was able to just "accept" what would be. I still did my best to work with baby between lessons and bring her to lessons well-rested and ready to learn, but I wasn't saddened when she didn't seem to make progress.
I hate typing that. It's terrible! A parent is supposed to deeply desire and even expect their child to make progress. Progress equals hope; it equals a future. For a baby so severely disabled, to come to a point of "accepting" the situation (which is the touted route towards happiness) is to let go of your child's future. And this is also to die a bit to your own future, in fact. Live in the moment, they say. Enjoy the now. But sometimes there is no joy and little life in the moment. My baby suffers every. single. day. She chokes, stiffens, struggles to breathe, lately she's taken to softly crying in her sleep on and on and on with her eyes closed. She never smiles to show me she feels good or feels loved. This is not a moment worth enjoying. It seems more like a living death.
Oops, we were talking about my feeling happy, right? Clearly not so much now. But, yes, after I stopped yearning for progress and just accepted what would be, I was able to unburden myself, to struggle so much less. A few times when Eleni moved in some positive way, it was easier to enjoy that since I was not pulled under by all the many more ways she failed. Soon after our therapy trip Brandon, Aria, Liam and I had a fun day out together, which managed to be truly fun. Next I became suddenly inspired to decorate a huge empty wall by our piano. And Brandon sweetly encouraged me! I had a darn good time with it.
It was almost surreal to feel happy again. But all the while I was distinctly aware that these happy moments were birthed in separation from Eleni. I believe I was able to be happy because I had accepted that my happiness could be separate from her pain. As simple as that sounds, it is not a natural sentiment of motherhood to smile while your child suffers. It is the most uneasy joy.
Back to Eleni. This month did hold a very important milestone for her. Amazingly, we got good news from a doctor... She can swallow! Her new ENT put a scope camera down her throat to observe. He watched her swallow her saliva many times, completely properly. I had hoped for such news based on some slurpy sounds she's been making since September, but our feeding therapist believed that Eleni wasn't making any progress at all with swallowing. I'm so glad I went with my gut and had her scoped. This new doctor will be part of a double surgery scheduled for Eleni on December 11th. She'll be getting a nissen, which will hopefully stop her from refluxing thus protecting her lungs, and a supraglottoplasty, which may make her sleep apnea less severe. Both of these surgeries have the potential to make Eleni more comfortable and overall more healthy. Great! And yet, they are required because she has made less progress than even her doctors had hoped. It's hard to feel really good about that.
Because of her surgeries, Eleni won't have a swallow study to assess her ability to swallow food until end of December. In the meantime she could be practicing some feeding skills if I want to go rogue. Last night I spent hours researching special needs feeding bottles, aspiration risks, milk thickening options and risks, etc., etc. Such a sap of time and energy, but also exciting to think we may be able to finally try to feed her.
|working on sitting|
I accept that fighting for Eleni in all these ways is my roll as her mother. Sometimes it leads towards a hopeful feeling, a risky hopeful feeling. But fighting for her doesn't make me happy. When you're fighting for someone, what would make you happy is seeing them succeed, get well, do better. I hope that 2016 holds some of that in the cards. And, if it doesn't... I hope I find the balance between fighting for her and separating from her to find happiness for myself and the others I love.
Thank you for your support this year, financially, emotionally and artistically. Through it all, this space has remained a true refuge for me. I can honestly say that even when I'm not having a good week I do enjoy escaping to my work with color and design on Wednesdays and Fridays. Because of Stitched in Color there is a part of my life that has remained mostly the way it should be. So thank you for reading!