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...!

Adoption!!

Hey everyone, I have some exciting news! It's kind of long though. I know I have shared before about our fertility journey and the problems that we've had as a result of Brad's spinal cord injury. To make a long story short, a few months ago we were talking some more about possibly starting a third round of IVF. However, we both just felt like God was telling us to stop, wait on Him, and trust that He is going to work everything out. As hard as it was, that's what we did. Literally two hours later I got a phone call from her doctor about a patient he knew of that wanted to put her baby up for adoption! And we were the first people he thought of. To add to the craziness, she was due in 7 weeks!

Now we have always been open to adoption, and thought there was a good chance that's what we would  one day. But we wanted to try everything we could to have our own biological child first. So we weren't on a list, or had met with an agency, or started the process at all. And God just dropped this in our lap. So we prayed about it over the weekend and felt like this was what He was calling us to do. 

From that point, He started opening all the doors and everything worked out so easily. The background checks, FBI report, home study, etc. that has to be done usually takes people about a month. We were able to do it in a week! Also, since this would be a private adoption, the cost for an attorney and everything that needed to be done would be a fraction of the cost of going through an agency. And the attorney we used had adopted his two kids so this was really important to him too. The hardest part was knowing that the birth mother had to wait 72 hours after the baby was born before she could sign the consent form or change her mind.

So on Thursday, November 12, our daughter was born at 7:55am, 6lb 14oz, and 18 1/2" long! She was the most beautiful thing we've ever seen. We stayed at the hospital with her during that 72 hours, and brought her home that Sunday. We named her Caroline Grace (Caroline). Having tried for almost four years to have a baby, we have so much more of an appreciation for her and if we had to do it all over again we wouldn't change anything. Adopting her has also given us a new outlook on how we have been adopted into God's family. We are just so thankful that we were given this opportunity.

Because everything happened the way it did, we know that God created her for us and chose us as her parents. It still seems so unreal; after all, we found out about her 7 weeks to the day until her birth. I had a friend mention that it's crazy how we limit God and what He plans to do by placing our prayers in a "box". For example, God, please let this IVF round work, or please let us get pregnant naturally. Had any of these things happened, we wouldn't have our sweet baby Caroline! She also brought up the reality that we are now holding an answered prayer. How amazing!

Lots of people have prayed for this for a long time, and we couldn't have done it without the help and support of our family, friends, and church. I do ask that you continue to pray for Brad's pain, especially now that he has a baby to help take care of and raise. There are times that he literally can't move because of the pain and that worries him about how he's going to deal with it and still be able to help with a baby now. But we are continuing to trust that God will always provide for us and allow him to do what he need to do. 

Family picture at the hospital

The dogs are slowly adjusting!

We just love her!!

My friend, Jill, made this onesie. There are exactly 1400 days between Brad's accident and Caroline's birthday! God is such a creative God!

She smiled like this twice and we got a picture!

Same Amount Of Time

Today marks the same amount of time we've been married before and after the injury. I can not believe so much time has gone by...

One one hand, I feel like I would give anything to go back to where we were and who we were. Not a care in the world, everything seemed so simple; life was on our side.

On the other hand, we have grown so much closer because of all we've been through. And even though more times than not it feels like we have a "push/pull" relationship with God, we have also grown closer to Him and stronger in our faith and what we believe.

We have definitely learned (and are still learning) what is truly important. Our families and friends have rallied around us and shown support, and for this we are truly grateful. Our lives look like nothing we would have planned. Brad absolutely misses his hobbies (his truck, motorcycle, and playing golf) and all of the everyday stuff (yard and house work, holding hands while walking through a store, opening doors for us, etc.).

It's weird but it's like the injury has erased a lot of what we used to do as well. I can only remember a few things of our routine before. It's a blessing and a curse at the same time, but there are times when it makes me so sad because memories are all we have from our life before.

I've said it before but it becomes all-consuming (suffocating, depressing, no way around) when I actually stop and consider the magnitude of what we've been through (pain and infertility as a result) and continue to battle daily.

"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up."     -Galatians 6:9

I repeat to myself over and over... Our good and Your glory, God. Our good and Your glory...

This was from my devotion this morning, Jesus Today.

Brad took this at our lake last weekend! Amazing!

Dating Through the Alphabet "A"

So, Brad and I decided to try something fun... Go on a date that has a theme with each letter of the alphabet. We saw the idea on the internet and thought it looked like fun!

For "A" we contacted Brad's cousin, Beth, to see if her husband, Brady (a pilot), could take us up for a ride! We got to go up yesterday and it was such a neat experience! It was super windy so that made the ride bumpier than usual and we didn't even think for Brad to take dramamine (he gets car sick very easily). That being said, our ride was pretty short, but we got to see our house from the sky!

It was a completely different experience because for the 'typical' person you would just step into the plane. However, Brady had to pick Brad up to get him to his seat. We have not had to do this yet, so Brad definitely had to look past this hurtle. They both handled the situation amazingly and we were able to do something we had not done before!

Us before getting in!

Brady, our pilot!

Beth, Brad's cousin!

Flying over our neighborhood!

Faithful in Prayer

Surgery Update:

This may be complicated but I'm going to try to make sense of it the best I can... We went in last Monday for the trial spinal cord stimulator. Brad ended up having 4 incisions in his back, with only one above his injury level that he was able to feel. The surgeon chose to do one 'paddle' with 16 electrical contacts at about the T4 level and then a second one at the T8 level. They were hoping that the higher one would reach his chest and back, while the lower would help his legs and feet. We found out throughout the week and after many different adjustments with the stimulator that Brad was not able to feel any stimulation where he has no normal sensation (from the middle of his chest down). Also, last summer when Brad had the hardware removed from his back, he lost some sensation on the left side of his back. This means that he can feel more on his right side than his left which also led to more adjustments with the stimulator. The bottom paddle was making Brad's stomach and lower back spasm (stimulation was reaching this low) but his legs were not responding at all.

Just a side note: Brad has NO movement or sensation from his chest down. All of the pain he feels is chronic nerve pain from the spinal cord injury.

All of this being said, the surgeon and the rep for the stimulator agreed that removing the lower paddle would be best since he was not getting any relief in his legs and feet. However, Brad did feel that the top paddle was working enough to keep it. So we went in this Monday to make everything permanent.

Initially, we were confused how the stimulator works but have found this explanation to be most helpful in helping us understand. This is from the literature that came with the stimulator from Boston Scientific: "The system electrically stimulates the spinal cord to alter the perception of pain signals that move along the nerve pathways on either side of the spine." The stimulation feels to him like a buzzing/tingling sensation that doesn't hurt, but doesn't necessarily feel good either. It's kind of a neutral feeling. However, he still feels the pain but is able to turn the stimulator up to a level higher than the pain so that his brain focuses on the stimulation and not on the pain. This is not THE answer we were hoping for, but it is providing some relief and for that we are grateful!

Through all of this we have had many discussions on prayer, the power of prayer, and the point in praying. If God is sovereign, which He is, so He knows ALL things, then what good does prayer do? We know in our hearts that we should pray, but sometimes it seems to fall on deaf ears. I have also been struggling with continuing to pray BOLD prayers because I've had them time and time again not answered HOW I want them and WHEN I want them.

The past 2 days, though, God has really shown me through my quiet time with Him the answers to these questions.

Yesterday God revealed these verses...

"I am the Lord, the God of all mankind. Is anything too hard for me?" -Jeremiah 32:27

"For with God nothing will be impossible." -Luke 1:37

"Then Jesus told his disciples a parable to show them that they should always pray and not give up." -Luke 18:1

Then this morning is was all about BOLD and continuous prayers...

"Never stop praying." 1 Thessalonians 5:17

"Devote yourselves to prayer with an alert mind and thankful heart." -Colossians 4:2

"Rejoice in our confident hope. Be patient in trouble, and keep on praying." -Romans 12:12

All of these spoke to me so clearly. We are to keep praying and not give up. Even though He knows everything, He wrote our story, we are still to be patient and keep praying. When it's hard, when He is silent, when the answer is 'no' or 'not yet', keep praying.

Something else that was revealed to me is that we need to have the confidence to pray for things that ONLY God can do (baby, no pain).

And sometimes our prayers are as simple as Luke 4:38, "Lord, help her." Joni Eareckson Tada said in her daily devotion that this short and simple prayer "describes how we've come to the end of our understanding and that we have nowhere or no one else to whom we can turn."

Proverbs 31 Ministries Daily Devotion also highlighted that, "Having a heart attitude of prayer simply means developing a focus on joy and gratitude. When we focus on the good, instead of the bad, we develop a mental attitude of thankfulness. When our hearts are full of thankfulness for God, we will find ourselves longing to talk with Him more and more and learning to recognize His holy whispers."

I pray that this post will encourage you when you need help in continuing to pray for something that you have prayed for a thousand times or need God to come through in a way that only He can.

Let's make it our focus to "keep on asking..." -Luke 11:9

On our vacation to Miramar Beach!!

Surgery

Tomorrow Brad is scheduled to have a trial spinal cord stimulator implanted to hopefully help manage the pain. We have been praying BOLD prayers that not only will the pain be minimal afterwards but that Brad will be able to lessen (ELIMINATE) his daily pain medications. We have had many different conversations about pain, medicines, and how he hasn't felt like himself since the injury 3 1/2 years ago. Brad is the most patient, kind-hearted person I know and I want this so badly for him; for him to be pain free and not have the 'fog' that he's felt for too long now. It's just too easy to take our health and absence of pain for granted...

If all goes well with this trial, they will go back in next Monday (the 13th) to put the permanent stimulator in place. If we do not get the results we want, the trial will be taken out this day as well.

Please be in prayer with us that this will be the miracle we have been praying for and that he would get some much needed relief.

Closing Chapters

Anyone who has experienced fertility issues will be able to relate to this post. Anyone who has struggled in any area only to have it come so easy to a close friend will be able to relate, for that matter.

One of my very best friends, Mariana, just moved away. She and her family have relocated to Texas because of her husband's job. The sad story started about a year ago.

Mariana and her husband moved to Mississippi in 2010. She was hired at school as the new kindergarten teacher (I was also teaching kindergarten at the time). After school had started and everyone found their routine, we hit it off as co-workers and friends. We had a lot of the same ideas, and she had a lot a good ideas to bring to the team. We loved teaching together that year. However, at the end of that year (my 3rd year in kindergarten) I was ready for a change and was moved to 2nd grade. Somewhere during this time they moved from the apartment they were renting to a house one street up from us in the same neighborhood!

My first year in 2nd grade was going great and Mariana and I were still finding time to catch up with each other and share ideas when we could. In October she shared that she and her husband were expecting their first baby! At this time, I could absolutely be so excited for them. Brad and I hadn't even starting trying to have a baby at this point. Then in January, Brad's accident happened. Mariana would come up to the hospital during our rehab stay (her husband would bring coffee because he also worked at the hospital) and visit with us once we got home. At this point, Brad and I understood a little more of what it would take to have a baby of our own, but we were still excited for them.  

Mariana had the baby on June 1st and we were so happy to be there at the hospital! For a friend to let you share in that with them was so special for us!

Time passes, we do two full rounds of IVF, and Mariana is such a great friend through all of this. Even though it was so easy for them to get pregnant the first time, she wasn't pregnant while we were doing our fertility treatments and that made it easier.

Last summer (2014) Brad and I were thinking that we were ready to do our 3rd round of IVF when Mariana tells me that they are pregnant for the 2nd time. This time, hearing the news absolutely crushed me. I know that she was not doing this to me, to hurt me. However, when you have struggled with something and are still in the struggle, this is what it can feel like at times.

Early on it wasn't so hard because she wasn't showing yet, but as time went on it became harder and harder. We didn't talk at school, and I didn't share with them what was going on in our lives. I didn't know what to do with my feelings. The only thing I knew to do was to withdraw for the time being. I would talk to Brad everyday about how hard that was, how much I missed her friendship, but how that was the only thing I knew to do. She was very understanding during this time, we talked about how this was hard, and she was very patient.

Then another bombshell hits. She tells me they are moving to TX in the summer. I cried the rest of the day at school after hearing this news. (This describes my emotions toward her during her pregnancy... mad, envious, sad, crying a lot, confused...) The whole time she is pregnant I'm thinking that after she has the baby it won't be so hard and we will go back to how things were before. I will fall in love with her new baby, and one day she may have the opportunity to be happy for us. Everything will be fine...

Well, now she is gone and we will never have the time I was counting on. I was able to spend time with her the last few days they were here. I was able to help out with the kids while they were trying to get the last things packed in the cars. I pulled out of the driveway with them. Me going to my house; she moving away.

Yes, we can stay in touch through texts, calls, and social media, but it will never be the same. I completely missed out on such an exciting time in a best friend's life. I have learned through this time, though, and from other people that sometimes we have to withdraw from certain people during certain times in our lives just to take care of us and what we need at that time. This seems completely selfish and I wish I could have pushed through, believe me I tried. Now, it is like there is a hole because she is not here. I look at her backyard every time I leave the neighborhood. It's weird to think that they are never coming back. The day they left I cried thinking about the regrets, but also about the hardships Brad and I have endured to lead to these feelings.

It is so great, though, to have such a great friend who doesn't get angry when you have those feelings. Who stands by you and loves you even when you don't feel so friendly towards them. That's who she is. I am so sad that they are gone, but maybe through the distance we can find our way back together and share the closeness we once had.

In the last few crazy minutes before they left!