Dear Seizure Disorder…

Dear Seizure Disorder,

I hate you. I can’t begin to describe how much I despise you. Our son was already facing a host of challenges when you showed up and took over our lives. You added meds, treatments and long hospital stays. You took away my son’s ability to sit up, roll over, kick his legs and hold up his own head. I hate you.

As an adoptive parent of a child with Down syndrome, I thought we were ahead of the game. We expected some challenges and jumped into therapy and skipped the surprise diagnosis discovery that biological parents have to go through. But then the seizures showed up and we were thrown into the deepest, darkest places in this giant ocean of grief that we try to keep our heads above the waves in. We watched as our son slowly deteriorated. Now, instead of wondering how long it will take him to reach milestones, we wonder if he ever will. Our talks have gone from therapy equipment to G tubes, tracheostomies and vesicostomies.

But here’s the thing you horrible disease… you won’t win this war. The reason? The more you throw at us, the stronger you make us. People outgrow you by age 3 and my son is almost 1. You have two years to do what you will. In that time we will fight you with meds, with diet, with therapy, with sheer will and endurance. Some day you will give up and we will be left standing stronger than we ever thought we could be. And you know what? Our son is starting to move his legs again. He is trying to lift his head, he is full of smiles that we haven’t seen in a long time. You have won the last few battles, but we will win the war. He is coming back to us as you disappear.

So I say to you seizure disorder, I will NOT let you define my son or my family. We won’t live our lives in fear of you and we won’t change our dreams and our goals based on what you might do to us. Someday, the horrible video of you on my computer that the doctors make me keep to share with your therapists will be deleted. I won’t give meds, I won’t grieve in your wake and I won’t stay awake wondering what you took from us as our son sleeps you off after each of your attacks.

I hate you, seizure disorder and I always will. I’m not sure that I will ever come to accept you as a part of my life. Instead, I will fight you and count the years, months, weeks, days, minutes and even hours until you are gone. I will not thank you like many people do, for teaching me something along the way. You are nothing but trouble. I don’t feel like a “better” person because I have faced you. But, I do thank the thousands of people who have prayed with us to eradicate you, to make you disappear. I have learned through them that we are loved so much and that you can’t change who we are. I have learned that God doesn’t leave me in the worst of my circumstances and that He can make some good come of even the situations as bad as the ones you create.

So until we meet again, I will not let you take up residence in my thoughts and keep me awake at night. It’s only a matter of time and we are coming to get you. We will win and you will lose. We will follow our dreams and make goals and nothing you try to do can stop us!

Sincerely,

Will’s Mom

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The First Advent

I have been so frustrated this holiday season by the fact that I haven’t been at church for Advent services. Christmas is definitely my favorite time of the year and I love being able to sing all the Christmas songs, see the lights and anticipate spending Christmas day with my family. It is just a lot of fun. This year, one kid after another has been sick, and it just keeps happening on Sunday mornings and Wednesday nights during service times.

This past Wednesday our little William was really struggling to breathe from a bad cough. We made the decision to take him in to the Mott Children’s Hospital ER. The day before that, Tuesday, I saw that Will was making a strange movement with his arms and I took a short video of it on my phone. As we were doing a breathing treatment and being diagnosed with RSV at the ER, I happened to mention this video and showed it to the doctor. Then, Will began to do it again and the doctor saw it firsthand. She said that it probably wasn’t a big deal, but that she would show Neurology just in case.

To make a long story short, on Saturday, only three days later, I was sitting in a quarantine hospital room with Will as he recovered from RSV, deeply grieving the new diagnosis of West syndrome that had blindsided me. Our world had changed so quickly, I felt like my head was spinning. Words like catastrophic, debilitating and major loss that the doctors had told me kept racing through my brain. They said that William will probably stop progressing in his development at least until he outgrows his seizures (around age 3 to 5). He may lose milestones that he has already gained and the fact that it is all happening during the most crucial developmental stage of his life will leave him permanently disabled.

I turned on the TV to try and distract myself since I couldn’t leave the room and a commercial with a Christmas song came on. I had completely forgotten about Christmas! This is my favorite day of the year. How did I miss it completely? I began to feel sorry for myself. I was mad that I was stuck in isolation, mad that I was not home to see my other kids, mad that I had missed basically the entire Christmas season and mad that God would let yet another thing happen to my baby.

I was in the midst of intense, angry prayer, basically telling God off for what was wrong in my world. Will was not experiencing his first Advent season the way he should and neither was I. Why would God allow all of these things to keep happening to him?

Then a new thought hit me, or God hit me, or realization hit me, or maybe a combination of all three. I was observing Advent the same way that the world experienced the first Advent. I was in deep mourning and waiting, wondering if God was really going to reveal himself in the midst of our despair. This overwhelming sense of understanding flooded me and Advent became so much more real in my life. We experience Advent by grieving with one another the wrong in this world with the hope and anticipation that somehow God will make it all right.

I hope that people grieve with us. But, and this is a big BUT, I don’t want anyone grieving for us. Although I can already see that my little William is subtly different than a week ago before our world changed, he is still William. He is still the amazing gift that God gave us and he will still change this world for the better. He will just do it with more challenges. Grief and pity for him will not help him become the person that God wants him to be.

But please grieve with us during what’s left of this Advent season. Grieve that the world is not how God intended it to be. Grieve that people are hungry, hurting, lonely, sick and oppressed just as they were during the first Advent. Then, on Christmas day, celebrate with us too! Unlike the first Advent, we already know that Jesus did come, that He did die for us, that He did redeem us and that He is coming back again to finish what He started, making all things new.

I was wondering how I would possibly be able to celebrate Christmas this year with all of the new heavy burdens in my heart. Maybe that is the whole point of Advent on our side of the cross. I can celebrate because I know that the deep grief, mourning and waiting is only the first half of the story.

So on Christmas morning, I will choose to celebrate the gift of my son, the beautiful albeit complicated life that he has led so far, and the fact that doctors told us he may never make it to Christmas to begin with and here he is. All of these things are beautiful miracles in our lives that are made sweeter by the knowledge that my God gave his son for my son. Even though I don’t know what will happen to my son in the future, I know what happened to His son in the past. I choose to see this Christmas for what it is; the promise that no matter what lies ahead, Jesus came in the flesh as a baby as helpless as my own, suffered and died so that we all can live eternally. It all really happened, and it happened for each of us, especially my little William. Amen and Merry Christmas!