Links to play catch up are at the end of this post.
Dear Maxine,
I am glad to hear you are feeling better. I absolutely loved reading the story of Rukai's path to walking freedom. I can very much relate to your experience--my oldest, Julianna, also had hypotonia and was a late walker (or what some might call late). At least she wasn't on the typical bell curve. She was scared to walk, and we did go the therapy route. Lots of physical therapy. It paid off, and she began walking around 20 months old. Didn't mean her gross motor skills were in check, but walking was the first step. Certainly watching her meet milestones has made me realize how much I take for granted in this life. I have it so good, and should never complain, really.
So on to your fabulous question: Tell me about a time when you really believe you were only able to get through a difficult time because your support network circled the wagons and lifted you? Do those who supported you then really know just how much they helped you?
Oh my. I'm sitting here trying to pinpoint just ONE difficult time. I'm trying to gather up in my mind the many, many people who have supported me over the last decade and get me through my motherhood journey thus far. But there is one experience that stands above the rest, and it's something I've never written about before, so here goes.
Hands down, the most difficult thing I've gone through with my three children (and that has been A LOT) is when my youngest had his palate repair surgery. He was 9 months old at the time. Previous to this, the surgery had been postponed TWICE by the surgeon due to conflicts, so by the time the actual day arrived, we were more than ready, and twice as anxious. Even though we had met with Nathan's surgeon a good number of times previous to this, and thought we knew what we were getting ourselves into, we really had NO idea what to expect.
The checking in part, and handing him off to the surgeon part were not as bad as I expected. I thought I would cry as he was wheeled away into those double doors, but I didn't. We went down to the waiting area with our "number" to watch on the big screen and sat there, surrounded by other parents also waiting for surgeries. Talk about a tense feeling in the room. Not much talking, other than those within their own families. We were all there for very tough reasons, and silence was just easier.
When the surgeons came down and announced that the surgery went well, we felt relieved. We were expecting it to go well because we felt confident in our surgeon. A few minutes later we were able to go up and see our little baby boy in the recovery area.
Now here's where it gets hard for me. Even typing this, I am crying. Just thinking about this moment still haunts me to my very heart and soul. I walked over to my baby and saw his very swollen face and jaw, saw how he could not even close his mouth, saw how groggy he looked, how much pain he was in--it brought me to my knees. I couldn't even bear to hold him the first few hours. The surgeons don't tell you how bad it will be after, maybe because ignorance means more courage at the get-go? I'm not really sure. All we knew about the recovery was that most babies go home after one night in the hospital and are able to drink from the bottle just fine afterward. No big deal--we can handle that!
Well, this didn't happen with Nathan. Joel, my husband, was able to stay the first night, but the next day he had to go back to work. I stayed there with Nathan the next day, struggling to get him to eat, and he still wouldn't. The pain was awful for him. When it looked like we would be staying another night, I felt like there was no hope in sight. How will we get through this? When will my little guy eat again? How will I be able to take care of him when we get home? I've never been so worried or scared as mom, ever.
Later that evening, after Joel came to visit and went home to take care of the other kids, one of my dear friends called to ask how I was doing. I lied and said things were going okay. We talked for a bit, and hung up. About an hour later, she surprised me at the hospital to say hello and even brought me some food and treats. She sat with me as I cried and told her how challenging this surgery had been for me, especially for Nathan. She listened to me. She was there when I really needed someone, and she still has been.
Support as a parent of exceptional needs children is vital. It is the lifeline. We simply can't do this alone, no matter how much we think we can. If we try to do it alone, we will probably drown. The old saying, "It takes a village to raise a child," doesn't apply when you have special needs kids, because it takes a TOWN, a CITY sometimes to keep you going. This is one of the biggest things I've learned in my first decade of motherhood.
So Maxine, as I wipe my tears away, I now get to ask you a question: What have you learned from being Rukai's mom that you didn't know before? How have you changed?
Staying strong in the US,
Kera
02 Feb 2016 | http://downinfrontplease.blogspot.co.uk/2016/02/transatlantic-tuesday-letters-from.html
02 Feb 2016 | http://thespecialreds.blogspot.co.uk/2016/02/transatlantic-tuesdays-letters-from.html
09 Feb 2016 | http://downinfrontplease.blogspot.co.uk/2016/02/no-but-i-have-son.html
16 Feb 2016 | http://thespecialreds.blogspot.co.uk/2016/02/transatlantic-tuesdays-4-take-high-road.html
23 Feb 2016 | http://downinfrontplease.blogspot.co.uk/2016/02/pride-of-my-pride-transatlantictuesdays.html
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