dread of the future? leo's four

     So recently, this fear has been creeping up on me. I believe that it's part of grief. Grief is an old friend of mine. She really is. As a mother, grief isn't with me all the time anymore. But we still talk occasionally. When Leo's birthday came up this year, Grief didn't really visit me beforehand. I didn't cry every day leading up to it. I wasn't overcome with all of the wishes I had for my kid that can't be realized. I wasn't painfully aware of the timeline on the day of. This year Grief dropped in on Leo's birthday, but didn't stay for the party. 

    On March 7th, the anniversary of the day that I went into labor, Grief came and sat with me. We talked about what labor looked like and felt like. We talked about how I did in labor. We talked about the amazing things that my body did to birth a child. It was nice to have someone understand that on the day Leo was born, I felt like I hadn't done enough. Because Leo needed more help after labor. I thought I would be all he needed. I thought all of that energy I put into getting him here would be enough. But it wasn't enough. Grief understood. And she reminded me that I will never be enough for Leo or any kid thereafter. Even if labor had resulted in a perfectly healthy Leo, I would not be enough for him. 

    But I did do enough. And I can sit with that. I did everything God asked of me. And he's got the reins. So Grief and I talked about that. After 4 years, it was interesting to really talk about that. We're not talking as much about Leo and his body. But I hadn't realized that I still needed to hear that it wasn't my body's fault. I was able to do what God had for me to do. I see so much more clearly how designed Leo truly is. I truly don't want him to be different. I don't wish neurotypical on my kid. God blessed us and called him to this. It ain't easy. But it is a joy. 

    On the evening of Leo's birthday, Grief stopped by for another visit. We talked a little bit about the night of Leo's birth. Something about those anniversaries. Your body remembers. I just had the thought at dinner, "Where was I four years ago at this time?" And I can tell you I was eating crab cakes, unaware of how drastically my life had shifted while my child fought for his life. I had no idea the hell that the next couple of weeks would be. Four years later, I was taken back to all of those feelings by one memory. So I told my friends. I told them I was sad because I remember being in the hospital room. I remember when it started to hit me that my baby wasn't with me. I remember the anger and the questions. I remember going home without my baby. It's hard to remember. 

    My friends (real people;) and Grief, sat with me and listened. They remembered with me. My body thanked me for talking about it. Grief saw that I had people to talk to and didn't stick around as long. But I know she'll always come back. 

    Fast forward a couple of days, and she's been texting me about this fear that is creeping up on me. I feel sad at seeing Leo's body changing. He's growing--wow!--and as he does his muscles wreak havoc on some parts of his body. I'm afraid that his ankles will lock up and he'll lose the mobility that he has. I don't like to see it. And I don't like fighting the fight of not taking on that outcome. Because as his ankles tighten, we are encouraged to have him in his boots/braces more often. That's wonderful that we can help. But I don't want to get to a point when he can't have his boots on anymore and for someone to tell me, "Well, if you had just had him in them more you could have prevented this." No, God is bigger than me. You can bet your life that I will do all that I can to give Leo a good life. But I will not make his ankles the most pressing thing about him. And, let me tell you, being diligent in everyday things like wearing his boots, and then not adopting the expectation that because of that his feet will not lose range of motion, is very hard. Plus, apply that to all the areas of Leo's physical body that beg to be addressed. 

    God controls my boy's development. I do not control that. I will work and teach Leo to work. But God controls the outcome. No physical thing changes who Leo is. And maybe he'll lose some time in his boots because he was on a hike with his cousins. Maybe he'll miss some time in his stander because we went to Maine to visit. Maybe he'll miss a therapy session because I have a mom's support group to go to. What a full and blessed life. 

    I cannot make Leo's physical "solutions" the goal, and I will forever feel like I have to qualify that statement to make sure that people understand that I care about his physical function. Giving Leo's physical needs the right amount of weight, balancing all of them, and teaching him about God and people and the way the world works will always feel imbalanced on this side of heaven. But I'm glad to only need to do one day at a time. 

    And I'm so thankful that God has given us FOUR years with our wonderful little lion man <3