It’s been nearly two years since my first post, and not much has changed. This blog was originally created as a way for me to allow others to better understand our journey of raising a child like Carson. It has also become a way for me to decompress and not become completely swallowed up by the emotions that raising a special needs child brings. To do that I have to share it all. The good, the bad, and the ugly. Special needs parenting is that and so much more. It is a constant fight. It is messy and complicated. It is rewarding, humbling, infuriating, nauseating, terrifying, amazing, life changing, and never ending. It will sweep you off your feet and then knock you on your butt. It shows no mercy, so you show no mercy right back. It changes everything: your personality, your interests, your entire outlook on life.
I spent the morning reading all of my previous posts, and I couldn’t help but laugh at myself. It’s funny how much your perspective can change over time. I went back to when we found out Carson was deaf. At the time that seemed like the hardest thing to accept. I couldn’t imagine raising a deaf child. It broke my heart. Now all I can do is laugh about how naive I was about how hard this journey was going to get. I have gone from being heartbroken that my child was deaf, to resentful that he is, and will probably always be, in a wheelchair, and finally to thankful that he woke up this morning to live another day. Special needs parenting is an emotional roller coaster that leaves you desperately trying to find something to cling onto. All you want to do is find something to steady yourself with.
A day will come when you realize that there is nothing that will steady you. Everyday will always be an emotional roller coaster. That’s just the reality of special needs parenting. On that day you will realize that the only thing you can cling to is faith. That is also the day you will realize that faith is much more complicated than you ever thought it was. You want to have faith that God will miraculously heal your child one day. Everyone around you will too. It’s okay to feel that way, but at some point your faith has to evolve with your child’s needs. I have learned that if my faith doesn’t evolve and I continue to “have faith” that God will heal Carson and make him “normal” (whatever that means) then I will end up resentful and bitter. God never promised us that he would fix our problems. He promised us that he would never leave nor forsake us.
Having faith doesn’t mean that you won’t have struggles. I struggle everyday. Special needs parenting is the biggest blessing and the heaviest burden. It causes you to have emotions and thoughts that no one else around you completely understands. My hope for this blog is not to burden anyone but to somehow provide encouragement to others who are struggling. In order to do that it is only fair to share my own struggles. My goal is not to make anyone feel sorry for me. Please don’t. When other people feel sorry for me it makes me want to feel sorry for myself. As a special needs parent I just don’t have the time or energy for that, and it’s not fair to Carson for me to throw a pity party for myself. If at any point this post becomes burdensome please stop reading. Like I said earlier in this post this blog is a way for me to allow people to experience this journey with us and as a way for me to decompress and spare my sanity instead of keeping it all bottled up. If at any point you want off of this crazy ride please stop reading. For those of you who would like to continue on this crazy ride buckle up and hold on tight. Here are my most current thoughts and struggles:
- I hate Carson’s wheelchair. But I also love it. It is the perfect chair for Carson. It positions him in a way that allows him to interact without struggling. However, It is also the biggest pain in my backside. Lifting and putting together Carson’s 40 pound chair is no easy task. Taking it apart to put it back in the trunk of my tiny car makes me want to set it on fire. If it didn’t cost twice as much as my first car I probably would have already done it. This frustration quickly turns into anger at the fact that I even have to struggle with a wheelchair in the first place. That brings me to my next struggle.
- Carson is becoming too heavy for me to pick up. This is why the wheelchair is so important. Carson only weighs 22 pounds and is not even close to being on the growth chart for weight. It doesn’t seem like it would be an issue to pick him up. However, Carson is not capable of supporting any of his own weight. Those 22 pounds feel more like 50. Even once I pick Carson up it is becoming a danger to both me and him for me to hold him. Because of his spastic movements and poor muscle tone, he often hits his head on objects that are close to us. He also likes to play a game where he takes all of his weight and throws it backwards which has almost landed him in the floor a few times. I have had several busted lips from him accidentally head butting or punching me in the mouth. I literally get beat up when I snuggle with him. There is going to come a day, sooner than I would like, when I can no longer hold and snuggle Carson, and that breaks my heart.
- Holidays are terrible. Every holiday ends up being a reminder that my child is not normal. Carson cannot participate in any typical holiday traditions. Sure I can force it and make these traditions happen. But it’s not the same and I know it. Carson cannot hunt for Easter eggs, he can’t enjoy Thanksgiving turkey, and he can’t open his own Christmas presents. I can’t buy him any of the typical presents you would buy for a two year old boy because no matter how much I want him to have that ride on tractor it is just a waste of money and a safety hazard. Needless to say holidays are not super fun at our house. Christian and I spend most of the holiday season stressed out and ready for it to be over. Don’t get me wrong I realize that holidays are about much more than traditions, but in the society we live in it is very hard to enjoy holidays for us. Birthdays are the only thing that I get to do on time. Whether Carson hits a developmental milestone or not he will age at the same rate as everyone else. That means that I turn into a crazy controlling stress ball to make sure his birthday party is exactly how I want it. It’s stupid I know, but its an outlet.
- I have a different plan for Carson than most people and that is frustrating. My end goal is not to “fix” Carson. I don’t feel like Carson is so flawed that he needs to be fixed. What Carson has is not cut and dry. There is no textbook solution. I have already accepted the fact that Carson is the way he is and he will most likely always be that way. My goal is to keep him from suffering. I work with his therapists and his doctors to give him the best life possible. Changing him is not the goal. I work to maintain his quality of life without putting him through unnecessary treatments. Not everyone understands or agrees with that, and I don’t expect people to. But it is frustrating to get the “if it were my child” scenarios because no one truly knows what they would do in that situation until they are in it.
- I feel trapped. Not a second goes by that I don’t have a long list of worries in the back of my mind. Being a special needs parent is physically and emotionally exhausting and you can never fully get away from it. Even when I am not physically with Carson I never stop thinking about it. When I’m not with him I’m constantly worried that something is going to happen to me and I won’t be around to take care of him. Most mothers feel like no one can take care of their child as well as they can because no one knows their child as well as they do. This is especially true for special needs parents.
- I have to force myself to not be resentful towards people with healthy children. It is so easy to become envious of all of the things that parents of “normal” children don’t have to do. It is easy to become angry when other parents get to do things with their child that I will never get to do with Carson. I am genuinely happy for people when their child is born healthy and when their child reaches a milestone that mine never did, but it also hurts. A lot. It is a choice to not become resentful. I have to fight my own jealous human nature every single day to keep from hating everyone else.
- I am terrified to have another child because it may end up like Carson. I feel like I dodged a bullet with Cambri, and I am scared to push my luck. The guilt that comes with that is unbearable. I feel terrible that I am scared to have another Carson. I love Carson, but I know that I physically and emotionally cannot handle another child with the needs that he has.
- The past few months I have been confronted with the reality over and over again that my child will probably die before I do (I warned you that this would not be for the faint of heart).This is my secret struggle. It is a struggle that I cannot talk about with other people because it is obviously something no one wants to talk about. It is the giant elephant in the room that everyone is so desperately trying to avoid. The reality of having a child with an undiagnosed disorder is that you have no way to even guess what will happen next. No matter how hard or uncomfortable it is I need to talk about my child’s death. It is something I could very well have to deal with. Right now the only reason Carson is even still alive is because of medical intervention. This week is going to open doors to a lot of other necessary medical interventions because of some new issues. There will come a point when medical intervention will fail or there will simply be no other options. At that point medical interventions yields to divine intervention. Of course I know that miracles can happen and God can heal Carson, but at this point in our journey I don’t think that is God’s plan.
The past few months have been hard as Carson is getting older. What I have come to realize is that my struggles are not Carson’s struggles. My struggles come from a very selfish place. Carson doesn’t get frustrated with his wheelchair. I do. Carson doesn’t care about holiday traditions. I do. Carson doesn’t realize that he is different from anyone else. I do. Carson doesn’t care that he can’t play football like his daddy used to. I do. Carson is not the one that feels cheated. I am. When it’s time for Carson to go he won’t suffer. I will. At the end of the day my struggles are about me. I don’t understand why God gave me Carson. I never will. All I can do is go one day at a time and choose to have faith that my God is bigger and no matter what happens Carson has always been his. It’s easy to tell myself that I don’t deserve a kid like Carson. I’ve learned that this is absolutely true. I don’t deserve a kid like Carson. Not because Carson is unworthy to be my child, but because I’m unworthy to be his mother. It is humbling that God chose me to be the parent of a child who is so pure and innocent and full of unconditional love. No matter how much it hurts sometimes, I will always be grateful for that.
Then the eyes of the blind will be opened, and the ears of the deaf unstopped. The lame will leap like a deer and the mute will shout for joy. Isaiah 35:5-6
Kayla, this is so raw, truthful, and beautiful. Thank you for your honesty and testimony as well. In SS, we have just studied from God’s Holy Scriptures how much each one of God’s created humans is valued. How precious Carson is to teach you about yourself and unconditional love. Again, thank you for this beautifully written blog.
Kayla, you don’t know me but I am a lifelong friend of your sweet mama. My name is Tam Johnson. I have read your blog a few times when I would see it on Facebook. What an inspiration you are…. while we do not always know why I do think we can rest assure that God has a plan. While we do not understand that plan it is our responsibility to look for God for our strength. It is nothing about us (or our circumstance) but all about Him. God shows us so much through our struggles and I want you to know that I am praying for you, Carson, the entire family and medical team that takes care of Carson. God will give you the knowledge and wisdom you need day to day (minute by minute) all you have to do is ask. I have experienced Joy in the midst of this life’s struggle and I pray you do. May you feel God’s peace and presence while you care for your sweet blessing, Carson. Make your story His so that He will get all the glory! I can tell you are an awesome young woman who loves Carson and God will continue to bless you beyond your years.
Kayla and Christian, God chose you both to be Carson’s parents because of the constant love he knew you provide for him no matter what obstacles are thrown in the way. He is a precious gift that I know brings so much joy to your personal al family and the Cophers’. It’s okay to have all of those fears, frustrations, and aggravation. It’s understandable, but in the grand scheme of things all that matters is you love your baby boy unconditionally and he loves you both the same! No mother or father could ask for anything more. He is precious and a special gift from God! Thinking of you all!
Mrs. Kerrie Davis
So beautifully written straight from your heart! I am sure you have no idea how many people you have inspired today. Your ability to cope has to come straight from God. It seems as if life is hard for most everyone these days but you have made me realize that my life is good despite medical issues. I have no idea how bad it hurts you each day to love Carson so much and not be able to help him. Every mama wants to help their children in every way they can buy when we can not help it breaks our heart. I will pray for all of your family each and every day. I will ask for comfort and peace for all of you. I will ask for understanding and purpose for you and Carson. I thank you for sharing this post that has helped me and so many others to think about what you and other families of special needs children face each and every day.