Something I don’t post a lot about is our clubfoot journey with little Miss J. I don’t know why, it’s a pretty big part of our lives really. Not as much now as it was in her early months of life…but it still effects our schedule and how she moves and plays. And back in those early days, life was such a blur: two 5 year olds and 2 infants to take care of, trying to sell our home in Ohio, going back and forth to Columbus weekly for Jessie’s orthopedic appointments, not sleeping, not having family around….not having a church family to lean on. Those days were tough and I remember thinking I didn’t want to be reminded of those days and I just wanted to get through. That’s why I don’t have a ton of pictures of those days. That’s why we didn’t save any of her casts. I don’t even know if I’ve ever shared many pictures of her little feet before and during casting. Now that there is a 2 year gap between then and now and I’ve had the time to process it all…here’s the things I’ve had rolling around in my heart about it all.
If you’ve read this blog for awhile you might recall all the things we’ve gone through with her: casting, a small procedure, bracing, PT, chiropractic care, cranial band, special shoes, Botox injections, and now, shoe inserts. Some of those things aren’t directly related to her clubfeet…but everything in her little body is to some degree related to each other. Her torticollis and clubfeet work against each other causing her muscles to be so tight. Fluid and graceful movement have not ever come easily for her, not mention just learning to crawl and walk were huge hurdles her body had to figure out how to achieve despite her stiffness….and I’m sure to some degree she experiences pain.
Back when we received her diagnosis, for some reason it didn’t come as too much of a shock. Maybe because we were expecting to hear bad news. Maybe because it seemed life was just not going “our way” during those months anyways…whatever the reason, I can’t say I was devastated or anything. But I can say looking back, I was entirely unprepared for what was ahead of us. Pretty much every doctor we came in contact with during my pregnancy and even when she was an infant told us clubfeet is completely curable and she will go on to lead a perfectly normal, active life. I know she’s only 2 years old…but I’m starting to realize to a certain degree, they might be wrong. For one main reason: everyone.is.different.
They didn’t know about her torticollis, or even how much it would effect her. They didn’t know her muscles would be so tight making it so difficult for her to learn to sit up, to crawl, to walk. They didn’t know wearing her boots and bar brace would actually work against her trying to walk/run. Special shoes, physical therapy, shoe inserts, tight muscles…none of these things were ever put on our radar at the beginning. They were going by what they know from a textbook…and that’s what I want doctors to do for sure. But sometimes, you have to push the textbook aside and get to know the person and look at them as a whole…not just looking at one piece of the puzzle. Thankfully her current orthopedist does just that. He tries his best to understand everything about what’s going on in her little body and then take the least invasive course of action. Some clubfoot babies are born with one foot effected and the other is normal. Some have moderate or even mild clubfeet. Some have Downs Syndrome or other health issues along with the clubfeet. Some clubfoot cases are open and shut easy ones….and some are not.
I know I am a plan ahead kind of person…but sometimes I wish those doctors at the beginning of our journey would have said “she might require special shoe inserts for the rest of her life.” or “there is a chance she will have difficulty when it comes time to walk and might require some physical therapy.” I just like to know and not be fooled into thinking “we just do x,y,z and that’s the end of that!” I might be alone in that mindset…but looking back, my process was 1. Casting 2. Boots and bar brace 3. Follow up every 6 months with orthopedist/done…obviously, that has not been our experience.
I’m starting to realize her body might always be tight to some degree. Or that her feet might never fully cooperate to allow her to do everything she might want to do. I do want to make it clear that her feet no longer turn up and in and so far she doesn’t seem to have regressed at all…but her feet and legs are so tight that often fluid movement is difficult. Her orthopedist has mentioned “surgery” only once…I didn’t ask what exactly that might look like…but I’m glad he put it on my radar as something that might have to happen down the road. There is always the hope that she will just outgrow some of these things…but we just don’t know for certain. Only the One Who made her knows everything about her future.
One day, as we were reading a toddler Bible and I was asking her “who made the sky/birds/kitties/flowers?!” and her sweet little answer every time in an excited voice with hands raised was “DOD!!!” (how she says God), it hit me…one day she will ask us “why did God make me this way?” I almost couldn’t breathe just thinking about a moment that will come one day. I had no answer to give.
For almost a year now I’ve been wrestling with the well-known passage in Psalm 139…I’m sure you’ve seen it: “I praise you for I am fearfully and wonderfully made.” We splash it all over our baby rooms, wall art, t-shirts, and coffee mugs…but do we ever stop to think what it means exactly? It’s become one of those platitude verses in my opinion. Like Jeremiah 29:11…”for I know the plans I have for you declares the Lord.” It looks nice on paper and sounds great to say….but are we using it correctly? What if life just kind of sucks and you don’t like God’s plans for you? What if you don’t feel like praising Him for the way He made you? And what if you feel like the way your body is formed is less than “wonderful”?
Of course I KNOW God is good and I KNOW He made all humans wonderfully and each life is a miracle. I know those things in my head…but sometimes my heart has trouble with them. But, we live in a sin-filled broken world and sin has it’s effect and grip on each one of us. Does that mean Jessie has clubfeet because of my sin or Nathan’s sin? No, that’s not what I’m saying. I’m saying bodies are imperfect because sin is in this world. No ones body is perfect whether you have a physical deformity or not. Each of our bodies are feeling the effects of this sinful world. Some people have more prominent physical limitations than others. Every time I take Jessie to some kind of Children’s hospital for an appointment I am extremely humbled. Some parents are given children with insurmountable limitations. I leave feeling very small and somewhat ashamed for ever grumbling about the way my daughter was made. Compared to those kids, her condition is very small beans. Not mention the fact that we live in a country where we are able to seek treatment options and have access to excellent healthcare. The majority of the world does not have those choices.
But that still brings me back around to the fact that one day she will ask why God made her this way. As of right now, I have no answer. Well I suppose I do have an answer…or maybe a few different answers and they go something like this: “Honestly, I don’t know why. But I am confident He knows why and He is good and He is kind and one day He will tell you why. I’m sure there might be more than one reason too. Maybe you will help others with similar problems one day. Maybe He’s teaching our family important things through you. Whatever the reasons, He has them, and for that we can rejoice. He does nothing by accident and that includes how He made you.” I may never fully grasp the verses in Psalm 139 in this life here on earth. Perhaps my human heart just can’t reconcile it…and I think that’s ok to not understand. But it’s what I do with my questions and hurt that matters.
I need to give it to Him. He cares. He is good and He is kind.
Does it still pain me to watch her constantly stumble, trip and fall when she runs? You bet. Sometimes when I think about as she grows perhaps she will want to participate in certain activities that she just can’t physically do…my heart hurts for her and I wonder how I will even be able to comfort her in those moments. And I absolutely take comfort in the fact that one day our bodies will be perfect and we will be without sin and we will dwell with Him forever. We can live with these temporary set-backs and limitations with joy and perseverance…because our eternity will include none of it! Praise God!
I don’t know where those feet will take her as she gets older…but I do know we have lots of stories to tell her and about how God can use those imperfect feet, to tell others about a perfect God Who does nothing by accident. I’m trusting Him that He can and will be glorified even through crooked feet and stiff bodies.
I wish I had some awesome theological explanation for Psalm 139, but I don’t…and trust me, I looked for it. But for now I will echo the prayer of a father Jesus spoke to in Mark 9…”I believe, help my unbelief.”
And in case you’re wondering, Jessie has another round of Botox scheduled for October. Last time he mostly focused on releasing the muscles in her toes and arch. We go in for a pre-op next week to discuss his plan of action for this time around. We would absolutely love your prayers again.
I think that’s all for now. Thank you for following along, loving our family, and allowing me this space to hash out my thoughts 🙂