Well to answer your question…actually it’s real close to what you would see in the movies. So you are standing there in the hospital room chatting it up with the grandparents waiting for the phone call in which they say, “she did very well and she is in recovery. We will be bringing her back to the room as soon as she wakes up.” I mean…how many times have you been through that if you are over 40?! You almost don’t break stride in your current conversation to listen with one ear to the well-rehearsed “she’s ok speech”. There is almost a pregame celebration going on because you are so cock sure of the end results.
If your question is, “What was your reaction after the diagnosis?” then you already know that’s not how that day went for Makenna, her mother or myself. To see her doctor walk in the room before getting the call was not as much of surprise at first as it might should have been. You see her Surgeon is a family friend. Heck, I coached his son in baseball. So for him to be showing up was a little Lagniappe (Cajun word…look it up) that you expected from the Doctor who was your friend first. A little personalized experience from your bud. You don’t need a phone call…the Doc told them he’ll deliver the good news himself, “I got it…I know these guys”.
So he was greeted with smiling faces. From me because I knew him. From the others…well…because I knew him. As I walked towards him to warmly grasp his hand and pat his back with the other, it dawned on me that he was off color and he looked nervous. In a matter of seconds I realized that there was something wrong. His face was anxious, his eyes were darting around the room trying to figure out who everyone else in the room was. It dawned on me that he was assessing the room to determine if it needed to be cleared from visitors before he proceeded with what he had to say. We stopped in mid-stride and locked eyes and in that moment I took a chance and said, “That’s my parents, you can talk in front of them.” From start to finish, that whole scene took about 16 seconds and the camera tunnels into black while he says. “We’ve got a problem.”
“Makenna has Cirrhosis of the Liver and we don’t know why” were the words that changed all of our lives forever. 3 weeks and about 3 doctors later, her Gastro doctor (another old friend of mine) has us in Nashville with a fourth Doctor at Vanderbilt University to confirm the local Gastro’s diagnosis of a very rare genetic disease called Wilson’s disease. I guess for the first month or so, we were in so much of a blur trying to find out what was attacking her liver that we didn’t have much of a chance to have a reaction. I mean it felt like that after the Surgeon uttered those first shaky words, everything went into hyper speed. What is Wilson’s? Is it curable? Will she have to have a liver transplant? Of course all of these things are racing through your head… but for me, I didn’t dare focus on any of them in hopes that if we didn’t talk about it, it might all just go away. I mean this is not real right…she had gone into the hospital for a routine gall bladder surgery. Those first few weeks was my first experience with the well-worn but very appropriate cliché “This is like a bad dream”.
Then on to the next worn out cliché…the old, “Why her?” barely a nose ahead of, “Let it happen to me Lord and not her.” The reason all those phrases are cliché is because they’ve been thought, felt and used in earnest since the first set of parents learned their child was seriously ill or wounded. There is simply no better way to verbally describe the anguish a parent feels when a child’s life has been threatened.
You’ve asked me what my reaction was after the diagnosis, but I don’t think I can answer that question yet. It’s been 7 months and to a certain extent Makenna’s life is somewhat back to normal…I think I am still reacting. Makenna is a different person. She’s had to grow up quick and she was singularly better equipped than most to do so. Her mother and I spend a tremendous amount of time and energy trying to make sure she doesn’t grow up too fast by making sure that everything that can be done to make her life as normal as can be expected has been done. That includes a precarious balance between keeping life as carefree as most 17 year old girl’s, while at the same time making sure she understands how serious her condition is as we prepare her to go off to college where she might have to explain all this to a doctor without either her mother or me around. Having absolutely no experience with any of these kinds of issues, you would think navigating all this would be terribly difficult. Not with Makenna at the center of the stage.
Ask any of her friends and they will tell you that most of the time Makenna’s reaction to bad news about herself, first and foremost is to be concerned about how everyone else is handling it. That’s just the way she is. When you see your child responding to personal crisis with patience, poise, faith and positivity, it’s hard to have a negative reaction yourself. When she starts wanting to use her condition to help others…well it darn near makes it impossible. Darn near that is…Oh I still have those moments where tears burst loose seemingly out of nowhere. But they are 90 days apart now. Why 90 days? Because that’s when her prescriptions run out and she has to go back in for testing. Getting back into the ever frustrating healthcare system and waiting for results of those test seem to bring a little of the panic back again, but as she has gone through this cycle a couple of times it also seems to get just a little bit easier each time.
As her time with this diagnoses increases, it seems so does her comfort level with it. I guess it’s all about what you get used to. One thing that has helped us all dramatically is her faith. I guess we didn’t know specifically how it would affect her life when we were pulling up to the church all those times but it seemed like something that had a possible great upside to it. Least you think we pat ourselves on the back for making sure she grew up in a Christian household (and she did)…you need to know that eventually that household would also be affected by a divorce between me and her Mom a couple of years before she was even diagnosed or even having any visible side effects to the illness. For Makenna, even having gone through some difficult times, she just never got to that age when believing and trusting in the Lord was uncool. From a very young age she took it all seriously and has NEVER been afraid to proclaim her faith. She is very much so a normal teenaged girl whose feelings can be hurt, who can say things she shouldn’t have and who never cleans her room without threats. I guess her Spiritual maturity did take a boost in the face of great odds and you might feel that anyone would start praying after that kind of news. But I think the secret to Makenna is that it didn’t take much of a boost. Her Faith seems to be much the same today as it was before the diagnosis. I can’t speak for anyone else, but watching my daughter handle the diagnosis and deal daily with the results of it has been a much needed inspiration to me. I know…another cliché. But it has. It is a very humbling experience to be schooled on how to handle crisis by your own daughter.
Ok, so what has been my reaction to the diagnosis? Today, I would say it is a weird mix of thankfulness, pride, feeling blessed and yes all that mixed with fear. Thankful for all her doctors, for my company’s willingness to participate in the cost of her medication, and for her boyfriend Michael’s influence in her life. Proud of the young woman she has become through all this and the woman it’s clear she will be. Blessed that her condition was found when it was and that there is even a medication for it now (until recently there wasn’t really one.) Blessed by family and friends like one of her best friends Kendall, who has helped her navigate the tricky life of a teenager who can’t drink and blessed by Makenna herself. As far as the fear goes…throughout my life, I have not been very consistent in trusting in God to take care of things but in watching Makenna, I feel like I am learning from a pro.
By: David Adams
Many children dream of growing up and finding someone to love more than anything else. From movies like “Forrest Gump,” and books by Nicholas Sparks, people are engrained with the vision of finding the love of their life to spend the remainder of their time with. They see so many people live “happily ever after,” and thus want to create their own fairytale ending.
Opening up yourself to another person, and detailing all of your vulnerabilities and weaknesses can be a daunting task. Just ask anybody who has opened up their lives to a potential significant other. It is an important step in finding one’s self, but at the same time it comes with a heavy price. But what happens when one has a sibling with disabilities? Do you tell your potential suitor immediately about this extra baggage you hold? Do you not talk about your siblings because you think that “ignorance is bliss?” The answers are not blatantly clear, and people go about it different ways. But, the aforementioned issue is one that siblings of children with disabilities often face, as the world often is narrow-minded in being affluent with all types of people in our world. As big of an issue this is, it especially hits home to me, as it was an issue that I too had to overcome as I dove into the part of my life where I was to open myself up to love somebody new, and have somebody new fully love me.
I have a sister named Katie, who has a genetic disease called Metachromatic Leukodystrophy or MLD for short. MLD is recessive genetic disorder which results in the loss of muscle function from the disintegration of myelin around the nerves. This disease afflicted Katie at 7 years old, and after a Bone Marrow Transplant over 16 years ago, she is still with us today, but is in a wheelchair and requires a substantial amount of help to live her daily life. But nonetheless, she is relatively healthy and will always be my hero.
Despite idolizing Katie for all that she has been through, creating a serious relationship with somebody new is still extremely scary. Everyone can remember their first date, or their first outing with that special someone they love. It brings excitement and joy, but it also brings a bit of uncertainty and fear. What do I say or do to get that second date? How can I come across as some amazing person? The questions perplex all of us as we try to do everything right to please that special someone and win them over. But for siblings of children with disabilities, the unique living condition often times makes the issue even harder.
I remember the first time I went out with a girl. It was a school basketball game, and I picked her up and just went and had a good time. My school won, of course, but thats irrelevant. One date led to another, and we spent a few months together sharing our lives and creating a bond. But throughout this time, I never could fully explain the life I lived to this girl. We came from extremely different backgrounds, and I felt that I could expose my true self to this individual. I was afraid of what she may think, and as a crazy teenager trying make the relationship last, I thought by ignoring the issue all together everything would work out. Boy was I wrong. After trying to live this fake narrative, I realized that it was just tearing me up inside. I was sad, angry, and purely confused on why this person could not show me that she cared enough to fully understand my situation and embrace my situation at its face value. She had met Katie multiple times, but never sought to create any type of relationship. I was heartbroken at watching this unfold, and extremely worried of if I was ever going to find someone who could embrace this life with me and love my sister as much as I do.
Fast forward a year.
I was working at a summer camp for children with disabilities for Young Life Capernaum in the summer of 2015. I was leading a few boys at this came for the week, and had traveled to Williams, Arizona to show these kids God’s unconditional love, and provide them a place to find a multitude of new friends. At this camp was kids with disabilities, including my sister Katie, buddies who are able bodied teens serving the Lord, and adult leaders who selflessly serve the Lord and work in this great ministry. It was a crazy week as I was filled with excitement leading my club’s boys cabin, as well as I was excited to see my sister have easily the best week of her life. But really it was one of the two best weeks of her life as she had already been to the camp before. But if you know Katie, you know she is slow to communicate and speak. But at this camp, she talks and communicated better than any other time in her life. The power of the Holy Spirit is real! But even more exciting for me was that I met a young girl who fully understood my life! Our club was paired up with a few girls from Jackson, Mississippi who had volunteered to serve as buddies to our friends with disabilities at the camp. They were smart, loving, gracious girls who had a heart to serve other. But one in particular not only had a servants heart, but stole my heart right from the start.
A tall, beautiful, brown hair, green eyed girl by the name of Makenna immediately caught my eye and proceeded to steal my heart. Makenna was a buddy from Mississippi who was paired up with our club. She had a heart as big as the world, and worked tirelessly to serve our friends, Katie being included. I caught on, over time, that she had seen something special in me as well, and we ultimately started talking after the completion of camp. Makenna went home to Mississippi, and I went back to California, but the 2000 mile separation didn’t stop this relationship from brewing.
The fall of 2015 ensued and Makenna and I visited each other many times. I went to Mississippi and got the Southern feel of SEC football and Southern hospitality. Makenna came to California and saw the Golden Gate Bridge and visited Disneyland. We had amazing times and never wanted them to end. But the most important thing I realized from this relationship was the love and concern Makenna not shared for me but for my sister as well.
Katie got real sick after summer camp, and spent a significant amount of time in the hospital. Despite being 2000 miles away, Makenna displayed compassion and concern much more than I had seen from some people 2 miles away. Makenna’s loving heart was displayed for my sister, and as a brother, seeing someone love you and your sister so much is more than I could ever ask for. Makenna has made me a better person, and has given me the faith that every sibling of a child with a disability can grow up and find someone to love them and the unique life they live.
Siblings of children with disabilities often face fear of finding someone to love them and their siblings. Sadly, often times they shield themselves form engaging in relationships, but even as they do it is frequent that they never find that special someone who truly understands it. The summer of 2015 was the best moment of my life. I met Makenna and instantly obtained solace and satisfaction knowing that there are amazing people in this world who truly embrace God’s love and share upon all who are in His kingdom. I met Makenna and we have shared amazing times together and look forward to our future together. For that I am forever grateful. But to the siblings of children with disabilities who make up the biggest minority in our world, I am confident that you too can open up your hearts to others and find the special someone who will love you and your special sibling so much. Nothing is ever easy, but if you follow your heart and always know right from wrong, you will find the fish in your sea who is just right for you, and for who you are just right for.
By: Michael Deauville