I know this is an unrealistic question, but I have asked myself this so many times. I had a tough adolescence and young adulthood. My life was very dark and confusing for many years due to my own choices. When I finally turned my life around I met Prince Charming. I had prayed for him and God delivered an amazing husband who loved God, and who loved me, despite my colorful past. Life was finally perfect. So naturally it was time to add some perfect children to the mix. Caroline was born 2 ½ years into our marriage and oh was she perfect. So beautiful, so sweet, so absolutely perfect. A delight to parent, a little jewel. Like all children she has her moments, but her moments are my moments and I totally get her. We click.
Two years later Max was born. I was not expecting a boy, I wanted another girl. I wanted to dress them up in matching clothes and hair ribbons. I wanted to make other people envious with the cuteness that I would unleash on the world. But that did not happen, I was given my Max. At 6 weeks old I began to have a funny feeling Max was “not perfect.” I could not put my finger on it, but I just felt it. The first year was a blur of adjusting to being a parent of two, so I didn’t have much time to dwell on my funny feeling.
The second year was better, I was getting used to things and Max was adorable and full of smiles. However, it was during that year that I began to notice he was not hitting his milestones. He was a little late with crawling, walking, talking, pointing and waving. This didn’t seem to be too big a deal. I heard that second children can be slower with things, so I rolled with it. What began to concern me though were the looks. I would take him to a mommy and me music class and he would enjoy himself and then cry hysterically every time the song changed. At first I thought, “OK, he is a boy, right, these things happen.” However, I didn’t get the “I have been there looks”. I was getting the “oh, he is special, poor you” looks from other parents. This really undid me and I would leave the class in tears. I swore off classes for a while and then I thought I would try again, I picked a tumbling class. What little boy would not love to run around a gym and flop on mats? He screamed, he hated it, he wouldn’t participate and he wanted back in his stroller. I sat in the car in the parking lot and called my mom in tears.
This is where it began, the journey of denial, education, love, heartache, amazing friendships and worry beyond what I though possible. An Early Intervention team came to look at him. (this runs through the county school system). He was deemed delayed in play, speech, gross motor, fine motor and self help skills. Before they came I had convinced myself it was all a mistake and I was just a neurotic parent. They were going to tell me he was just like his daddy, an inside boy, a junior engineer, that was all. But they didn’t, they pointed out things like the fact that he could only bend at his waist and could not squat at all. We knew he had a funny run, but they told us technically it was not even a run, since both feet never left the floor at the same time. They told us that playing the piano for 45 minutes at a time was a bad sign in a 22 month old, and that the three electronic toys he played with over and over, was not “just like Daddy” but a sign of delayed social skills.
We started therapy right away, Speech, Occupational and Physical. He was referred down to the Denver Children’s Hospital for tests for Muscular Dystrophy, Fragile X, Thyroid issues and Chromosome deletions. Every test was a roller coaster filled with fear. I was sure with each test it would come back positive and I would grieve it. Then we would get the negative results I would shout to the world, see my son is normal. Then they would order another test, I would grieve again, and then again shout SEEEEE!
But I knew something was wrong, he could not go up and down stairs, he still crawled a lot, and he had big transition problems. We were encouraged as we watched his speech improve quickly, but with his new found speech we noticed a new problem. He would get stuck and repeat the same thing over and over again. He was unable to turn his thoughts off. This was a tough one. I felt I could handle physical issues, but mental? That seemed scarier somehow.
I felt so alone. From the beginning there were SO many well meaning friends and family who would say, “he will be fine, he is just a boy, don’t worry he will grow out of it, he is a late bloomer.” Part of me wanted to believe them but most of me wanted to scream at them since they didn’t get it. I pushed people out of my life, I struggled with close family members who were only trying to help, but it felt like no one was helping. I wanted support, but I didn’t want to face things fully. No one was going to be able to say the right thing to me.
My husband was by my side encouraging me. His engineer brain accepted right away that something was wrong and we would just be logical about it and help Max. He was not swinging from one side to another like I was. He listened and comforted at every step. I met a woman through an Ebay transaction. Such a random way to meet someone, but we clicked and we shared. She had walked in my shoes with her own son with special needs. She was amazing, she helped me SO much on this journey. When I would be mad, sad, confused or all of the above she would email me letting me know she heard me, that it was OK to feel those feelings. Then she would gently ask me where I was on accepting things. Fine, just fine I would report. After all I was driving him to Denver for tests, he was just enrolled in a therapy preschool, what could I not be accepting?
But she knew my heart, and my heart was breaking over and over. We would have a good day and I would convince myself it is all a mistake and that my son was totally normal. Then our usual life would return and I would be devastated all over again. I felt like on the good days the blinders had been ripped from my eyes. I saw how NORMAL people got to live. I would be overcome with anger and even rage at my lot in life, where was my perfect?
After swinging from good to bad for 18 months I hit an emotional wall and a car door….one day Max had spent over an hour obsessing, saying the same sentence over and over. I tried every trick I knew, nothing worked. I was spent, sad and scared. What was happening to my son? I went to load some things in the car for preschool and in my distraction I opened the door right into my forehead – hard. I saw stars. I came back into the house sobbing. That moment changed everything. The hit on the head woke me up. It woke me up to the fact that that I needed help too. I could not keep going on this roller coaster. I had to get off and accept our life.
It has been said that when you hit bottom the only way left to go is up. That has been true for me. I stood up, and with the help of friends, my doctor and my family, I am now climbing up out of self pity and my longing for perfection. I am healthy enough now to make changes for Max that are showing some great results for him mentally. His stuck thoughts seem to be less and less and when he does get stuck he doesn’t stay that way very long. This has brought us great joy and hope. I have also gained enough strength to handle his recent physical set backs, which although very concerning are laced with peace. He recently spent 10 days limping with 2 days not being able to walk at all. We have no idea why, but I know what ever it is, more medical tests are on order, we can handle it.
I struggle to even put into words the changes that have happened in me. I see Max so differently now. I feel hope. I didn’t realize how much I was missing that. I feel that we are apart of something bigger. I can now see so many blessings and beautiful things that are happening, where before I could only see our pain. I am humbled by this journey and I realize it has only just begun. We still have both good and bad days. I am slowly learning to love the good days, to be thankful and to cherish them for the rest and blessing that they are. When the bad days arrive, I have more energy for them now, I have more hope stored up.
God gave this child to me. It is very obvious to me that he was not given to me due to my amazing ability to parent him. I see how he was given to me so I can grow. I am profoundly thankful for this opportunity…I need it. I have a new definition of perfect now. Perfect is a child who helps you grow closer to God. Max does this, through his trials and his successes I feel us moving closer. And it is just perfect.
Author of the New York Times Bestselling Memoir CARRY ON, WARRIOR
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