Note to my readers: Kara is my cousin’s wife. She is brilliant, talented, kind, thoughtful, and an inspiration to mothers everywhere, but especially to those whose children have “invisible” challenges. I am deeply honored and so grateful that she has shared her story here, and I only wish you could meet her beautiful family. I promise, every word of this is worth reading and sharing. (Warning: keep a tissue handy). -Shadra
A very special contribution from Kara Lyn Lund
When my youngest son was two years, two months, and one day old, he sat down next to his big sister to eat a bowl of fruit loops and his life and the lives of everyone in our family changed forever. That moment happened to be the moment when a congenital defect that we were completely unaware of suddenly manifested. He was probably born with it. It was something called an arteriovenous malformation, or AVM. It’s a defect caused (in his case) by a genetic disorder called Hereditary Hemorrhagic Telangiectasia, or HHT.
AVMs are where blood vessels don’t form properly and cause weak places in the vascular system. They can be anywhere in the body, and for many people with HHT, they just cause annoying nose bleeds. However, when one of these AVM’s bursts in the brain, spinal cord or lungs, you can imagine how much worse it can be. In my son’s case, a large AVM was buried in the upper part of his spinal cord. As he sat to eat breakfast that morning, that AVM burst for no apparent reason. It simply couldn’t stand up to the pressure of a beating heart and circulating blood any longer. It was like having a stroke on the spinal cord, and caused almost complete paralysis within a few hours. Although I did not understand what had happened to him until the following evening, I will always remember the colorful bits of breakfast cereal that spilled across the table when he suddenly lost control of his limbs and everything changed.
His story is a long one. We spent about two months in the hospital while he had lifesaving surgeries, complications, more surgeries, tests, and therapy. During this time, my husband and I learned how to do all the new cares we would be responsible for when he left the hospital. He came home with a trach and ventilator to help him breath, a g-tube for feedings, and more equipment than I care to list. Although he has grown stronger in the (almost) three years since his injury, he still uses all of that equipment and more. Wheelchair, stander, commode, hand splint, foot braces, torso support, the list could go on. He has gradually gained strength back in his arms and even gotten some very limited use of his fingers, however we have never seen any indication of sensation or control below his chest. While we watch and wait for medical and therapeutic advances to give him more hope of walking, we do not anticipate him being able to walk again without some considerable miracles.
And he is one of the happiest and smartest five-year-olds I know. He will do great in life.
Now, let me tell you about my other paralyzed child. My oldest child.
My oldest son has always been what you might call quirky. He’s always been different. His speech therapist when he was three called him “unique.” In his kindergarten graduation program, he stood staring out at the lunchroom full of parents and only opened his mouth to yawn once while the other kids sang songs about letters, numbers, and the days of the week. In first grade he refused to read aloud for the state reading test, which resulted in a letter claiming he did not know how to read. We all knew he could read just fine, he just wouldn‘t read under those circumstances. I could make a list about a mile long with all the things he did that made him just different enough from the other kids. Enough to make me wonder if there was something going on with him.
He has always been sensitive to change. And by sensitive I mean the first time we moved when he was about 18 months, he had a look of terror on his face as he watched people carrying furniture out of our apartment. It was as if the world were collapsing in on itself. Even with small changes he needed advanced preparation. So in second grade, when I brought up the idea of taking a lunch to school rather than eating the cafeteria food, he definitely had a hard time with that idea. I told him I would send a note to his teacher so that she could help him get to the right place and that everything would be just fine. He grudgingly agreed to try it out.
As it turned out, everything was not quite fine. His teacher made sure he got to the lunch room and found a place to sit. Then she left to eat her lunch in her classroom. He just sat. His lunch also sat, unopened, on the table in front of him. As he sat, the tears started to come. A boy asked him what was wrong, but he wouldn’t talk to him. The boy went and found the principal who came to the lunchroom to find my son standing with his face against the wall, crying. His lunch was still untouched. He told me later that he stood against the wall to hide. Changing one small thing in his routine made him want to hide. Eventually, the principal was able to talk him into sitting down again. They opened his lunch bag together and pulled out the contents so that he could eat. While most of his quirks could be explained away by saying he was shy or reserved or smart or just different, I knew this reaction was outside the realm of “normal.” While he had had some minor issues in the past, this made clear to me that he was going to need more help to succeed in school and life in general.
Getting that help has turned out to be a long process. It’s taken years just to get a diagnosis. I’ve repeated stories of his infancy and childhood to numerous doctors and therapists. Recently, he was diagnosed as high-functioning autistic. Over the years, I have learned about autism and aspergers. A friend’s daughter was diagnosed with aspergers a few years back. I would watch shows that included high-functioning autistic children, and while not every symptom matched up, many of them did. Sometimes it was like looking at a reflection of my son. The older he has gotten, the more clear it has become that he has special needs that cannot be met by typical parenting or teaching. His anxiety has become more pronounced. He has even threatened to end his own life. He’s currently ten years old.
I feel like I am living with two paralyzed children. One needs a wheelchair and many medical and technological devices to help him live as independently as possible. The other one walks, runs, and jumps. One wakes up everyday ready for whatever comes his way. The other frequently has to be dressed and dragged off to school, not because he can’t do it himself, but because the world he wakes up in everyday is harsh and unpredictable. Navigating this world is overwhelming to him. When I look at my quadriplegic child, I feel hopeful for his future. He is happy and fun to be around, and if he were one day named homecoming king, I would not be the least bit surprised. We all admire his strength and determination. His biggest life challenges are there for everyone to see, and it is easy to see that they don‘t stop him from doing much. His older brother can walk just fine. There is nothing in his look that would suggest he is anything other than normal (Unless he has just colored his nose purple, which he did yesterday. I laughed when his teacher sent that text!). But inside, he is paralyzed. I don’t have to worry about his ability to move, but I frequently worry about his ability to navigate this life. Will he have friends? Will he be made fun of? Is he going to be able to participate in the same activities the rest of his class does? Will his teachers be patient with his inability to communicate his needs (in spite of a substantial vocabulary)? Will he be patient with them when they don’t understand those needs? Of my two special needs children, I have far fewer fears for my physically challenged son. I know that wherever he wants to go, he has the wheels, ramps, elevators and people to help him get there. For my autistic son, the path is unclear. I believe he has great potential. He is bright, and passionate. But there’s no wheelchair for him. He’ll have to learn how to jump emotional and mental hurdles that most of us step over with ease. I believe he can do it, but it will be no less miraculous for him than it would be for my wheelchair-bound son to someday learn to walk again.