Comfort and Joy

"Joy lies in the fight, in the attempt, in the suffering involved, not in the victory itself"- Mahatma Gandhi

It has been two weeks since we decided to start taking Sydney off of her anti-convulsion meds. Yesterday we were able to drop her meds another 1/4 of a dose! She continues to be seizure-free and she is making AMAZING progress! Hurray!

It has taken me a while to write this post due to the range of emotions that I have been feeling this week. I wasn’t quite sure how I wanted to share my joys, (or fears for that matter). Along with this, I wasn’t sure if I even wanted to write or share some of the recent experiences that I have had with Sydney. Some of them are so sacred and dear to me, that I wasn’t sure that I wanted them to be kept on record. In the Bible there are many times that stories are stopped or omitted due to the sacred content. I get it. To me, this is one of those times. I have decided however to share this one particular moment because I want Sydney to look back on this process and read about the moment that we had our first meaningful connection.

Just a little back story for you: Ever since Sydney started on these meds she has had a lot of discomfort in that little body of hers. I have always chalked up her whininess and crankiness to her medication. It was the reason for everything; she can’t sleep, she can’t eat, she can’t sit still, she can’t talk, etc., all because she just seemed too uncomfortable in her own skin. I gave up on all the simple mother/baby bonding moments like cuddling and sleeping together because my daughter was “too uncomfortable”.

So, last Thursday my mother-in-law took Dylan for the afternoon. Macey was taking a nap, and I was alone with Sydney. She had woken up from her nap, and if anyone has read about her sleeping routines you would know that she hates to talk, or interact right after waking up, (she is like her mama). So I opened her door and walked away as I usually do (so that she doesn’t scream at me when I look at her), and I hear her come out and say, “hi mommy, hold you?” (Which means: “hold me”). She talked! Put four words together! AND, she wanted me to hold her! I picked her up and lay down with her on my bed and began telling her the story of her birth. After about 6 minutes I realized that she was completely engaged in what I was saying. I continued talking hoping she would lie for just a bit longer. We laid there giggling, and conversing with each other…she said words and phrases that I didn’t even know she knew! SHE WAS THERE, TALKING WITH ME, THE ENTIRE TIME! After another 10 minutes had passed I began sobbing tears of joy, to which she responded, “mommy, sad.” My baby girl was comfortable in her own skin! For the first time in her life, she was comfortable enough to lay and talk with her mommy for over an hour and a half. I wanted to get my camera to capture the moment of us laughing and talking together, but I couldn’t ruin the moment. I didn’t want anyone to be a part of that moment but her and me. It was beautiful.

I am not sure if many of you would (or even could) appreciate how wonderful this was for both Sydney and I, but I am here to say that it was easily the most powerfully moving moment of my life as a mother. All the suffering, tears, and discomfort led up to this very moment. These experiences continued on throughout the week. Sydney has put 4 word sentences together, she is more content during the day, she converses, she cuddles; she does it all! All this by just lowering the dose by a quarter. We went down another quarter yesterday and will be at this dose for a month before we decrease again. I can’t wait to see what my little girl will share with us next!

Of course we are still worried about the potential for seizures, but writing experiences like this one help to keep me focused on the positives. Keep fighting Sydney!