(I wrote this two nights ago, but we lost power until around 2:00 am and so, I was not able to post this–just getting back to it now).
Two years ago on the evening of September 10th, I was on the phone with my midwife, trying to figure out the latest strange health issue with my pregnancy. She decided that I didn’t need to come in that night, but should come in the next morning. At 6:00 a.m., my mucous plug came out and I began to have contractions (although I didn’t think it was real labor until about 12:00 pm–the midwife had even seen me that morning and sent me home). Anyway, I guess it was just pre-labor stuff happening on the night of the 10th. Josh has been with us now for 2 years. I didn’t know two years ago the path that was in front of us. I am sure it is better that way (that we can’t see the path ahead).
I am currently in a 10 week yoga teacher training. I feel exhausted today and yet more emotionally open than I’ve been for two years. I think I’ve just been holding my breath, holding it together. It is sort of like a coma–induced to preserve all energy for healing. My waking coma was perhaps self-induced, to preserve all energy to focusing on Josh’s various health issues/mysteries. Anyway, I admitted to myself this week that I have a special needs child and I cried rather deeply about this matter for really the first time. I think that people think “well, you just slap hearing aids on him and he is just like a regular kid.” Ha, if only it were that easy. Don’t get me wrong; Josh is so very wonderful and this is my journey. But it isn’t an easy journey by any means.
We ended our day today in a yoga circle, offering up a word of gratitude. I said I was grateful for my special needs child who turns two tomorrow (I said it aloud in a group) and my husband for taking care of him every weekend for the next 10 weeks so that I could get this break. After we closed, three women came up to me (I recognized two as yoga instructors that I’ve had in the past) and told me they all had special needs children. One woman embraced me and said she would pray for me. I started weeping.
On my way home, I realized that Chris and I have largely tried to carry the mystery, fear, and sadness about the “Josh Syndrome” all on our own. We really haven’t reached outward for help and thus, Josh does not have a richness of a community supporting him. In our previous lives, Chris and I were both very self-sufficient, perhaps to an extreme. For various reasons, this thing with Josh has gotten us both separately down on our knees this past week. We didn’t even know it–just compared notes later. What else could do this but a loving little guy who places both hope and fear of the unknown future before us everyday. And we must, somehow, learn to live more fully here in this uncomfortable place. That, in all truth, is what you do in yoga; learn to be in the uncomfortable places, watching how they come and go.
There is something about a birthday marker to sort of get you thinking. For Chris and I, we both realized that it is time for us to begin to live again. To truly accept and find the new normal. To invite others onto our path. To reach out for help. To build up a broader network of support both for Josh and for ourselves. Josh’s life is a miracle and I breathe in and let it now unfold as it will. I am so grateful that Chris is on this path with me. I cannot imagine being here without him. Even without (much) yoga, Chris has somehow achieved an equanimous existence. He was raised by some rather fantastic, loving, supportive parents–so I am sure that goes a long way towards making such a stable, even presence. His mother still prays wisdom for Chris everyday. How many people have that going for them? I’d venture a very very precious few (Helen–if you read this, I do love you so–you raised an amazing son).
(Back to present tense–late Monday night). Yesterday we closed our yoga practice in the dark with all 100 sweaty people in that room holding hands and singing to John Lennon’s “Watching the Wheels” song (one of the first records I ever bought myself), all of us blasting out “I just have to let it go” at the top of our lungs. I burst out crying once again at that moment. It sounds touchy feely but it really was an amazing moment. I feel open again. My heart is open, towards myself and others. And now, I can look down at Josh, just as I did on that first night in the hospital, and say “you are the most perfect little guy ever.”