Tuesday, July 19, 2016

Parenting From A Wheelchair

This may be strange to some to go from sharing about our adoption, followed by all of the struggles Brad faces, but this is our daily life and I wanted him to have the opportunity to share... We have always been a great team, and now with a little baby we have become even better at tag-teaming! We are humbled and astounded every day that God has given us this chance to be parents. 

Well I’ve never done this before, but Kristan asked me to share about parenthood from my perspective. First, I want to give all the glory to God for placing this little baby girl into our lives. I never thought, aside from my wife, that I could love another person this much. The thought that she isn’t biologically mine never even creeps into the back of my mind. She is my daughter, and always will be. However, this process has given me a new insight into the strength and courage it takes for women to make this choice for a chance at a better life, because they know it’s the best decision for their child. I am eternally grateful to Caroline’s birth mother for giving us this opportunity. 

It has been so fun to watch her grow and learn how to do new things. To me, it’s the little things she does that I love the most. From some of her sweet little sounds, to facial expressions, to arm and finger movements, it just doesn’t get any cuter. Probably my favorite thing, and everybody that has ever met her knows this, is she ALWAYS has the biggest grin on her face. Every time she looks at somebody she smiles. Every time she gets in her jumper, eats, plays with toys, takes a bath, watches the dogs…she smiles. Every morning when I wake up in pain, I look over and next to me in the middle of the bed is this little person with a huge smile on her face. It just makes all the difference.

Now, as you can imagine, parenting from a wheelchair is not easy. I have more limitations than I can list, especially with a baby. One of the most frustrating ones due to my spinal cord injury is not being able to use any of my core muscles (abs/lower back, etc.) being paralyzed from the chest down. So I can’t balance my upper body at all. If I lean over in any direction in my chair, I can’t pull myself back up. Even the weight of putting my arms out in front of me is enough to make me fall forward. So I always have to lean against or hold onto something to stay upright. This makes it impossible to pick up Caroline with two hands.  Whether she’s on the floor, in her jumper, etc. I can only use one hand to pick her up because I have to use the other one to hold on or push myself back up. So I’m limited to moving her from the bed, couch, stroller, and changing table since they are level with my lap. Kristan gets her in and out of the car, bathtub, bouncy, jumper, walker, floor, etc.

Also, carrying her around is very tricky. When she was really small and didn’t move much, I just laid her in my lap as I pushed my chair. But now that she is more active, I have to keep one hand on her at all times. So I have to push one wheel, then switch hands holding her to push the other one. Sometimes I will use a Velcro strap that I wrap around both of us so that I can keep her in my lap if I have to do things with my hands. I also can’t hold her in my arms or against my chest like I would if I were standing. I can only just sit her in my lap. It’s really hard every night when we feed her the last bottle and I have to watch Kristan carry her to bed asleep, because I can’t. Even if I rock her to sleep in the recliner, I can’t get back into my chair and hold her at the same time.

She is at the stage now, where she is sitting up on her own and loves to play in the floor. She isn’t crawling yet so we just put her on a pallet with all of her toys. Getting on the ground from a wheelchair isn’t that bad, it’s getting back up that is near impossible. I can do it, but it takes all the strength I have. Because I am so tall, I have to push myself up a lot higher than most people. So sometimes the effort is just too much to get down and back up, so I’ll sit and watch her from my chair.

I have also adapted/modified a lot of things in our house to make it easier for me to take care of her. We couldn’t find a changing table that I could pull underneath; they all had drawers or shelves in the way. So I built one myself. I also had a friend cut the front of her crib in half and I put a hinge on one side so I can swing it open to get better access to her, since I can’t reach over the top of the rail. I widened our dog gate so my chair could fit through it and welded in a very shallow angled plate on the bottom to make it easier to roll over. Lastly, I ran a dowel rod through a loop on our diaper genie so I could push the foot pedal down with my hand to put a diaper in. Modifications that allow me to do the basic day to day things I used to is a never ending process.

In addition to the limitations, one of the biggest problems that affects my parenting abilities is dealing with severe chronic nerve pain. To be honest, I feel like the inside of my body from my injury level (chest) down is being set on fire and electrocuted…every second of every day. Basically at this point, there are bad days and worse days. So whether or not I feed, change, play, etc. with Caroline all depends on how much pain I am in at that given time. Most of the time, I just push through it. But there are times when I just have to ask Kristan to do something with her for me because the pain is so bad it hurts to move. I have been working with my doctor to continue trying options for better pain management, as this continues to be a daily struggle.

I know there was some negativity in this post, but it's real and it’s what I deal with every day. I feel that public knowledge of spinal cord injuries is very lacking in our society. Most people just aren’t aware of how literally every aspect of our lives is affected by this disability. So hopefully this is an eye-opener to what it’s like to parent from a wheelchair. I love Caroline more than I could ever express and I’m so thankful for her, but it isn’t easy. However, after waiting for four years I think we both take one extra look and get one extra kiss from her before we go to bed every night. The waiting has brought a level of appreciation that I don’t think I would have if getting pregnant was easy. At the end of the day, I have a beautiful wife and baby and that’s more than I could ever ask for.  

Kristan is going to share a more upbeat, updated post soon. She just wanted me to honestly share my struggles I face becoming a dad...

                              Here is the changing table, diaper genie, and crib that I have modified for easier access.

                                         This is the dog gate I fixed so that my chair would fit through.                                        

People say she looks like me...

Sweet baby at her Dedication lunch.

Picture Kristan took for part of my Father's Day gift.

Our recent trip to Atlanta, where we visited the aquarium.

Face Timing while Kristan is taking her for a walk. I just can't take those sunglasses...!

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