Gavin's Story

I am the mother of Gavin Meyer. A son who was born to me to that has changed my life, my perspective, my goals and my everything. Gavin is a beautiful and special child who was born with lissencephaly, miller dieker syndrome. Right from the start of his life we were told nothing but bad news about his condition and what he could never do, what he would suffer from that would ultimately end in his death likely before he was two (and we were told likely by 3 months). When I held him in my arms as I listened to the barrage of bad news I knew it was my job as his mother to do everything possible to make his life with us as good as it possibly could be. Whatever came we would deal with it one day at a time. As it turns out it is he who improved my life and made me a better person for having known him and learned from him. The supposed weakest link turned out to be the strongest one in the family. Drawing everyone around him like a magnet. He forged our love into an unbreakable bond. 

We all loved him and were so proud of him and did what we had to do to make sure he was safe and well cared for. His sister Emily loved to show him off to others and say, “this is my brother Gavin, he has a smooth brain. Isn’t he cute”! Emily and Sawyer, his older brother, loved to take turns pushing him in his wheelchair or stander and finding the next best light toy that he might like. They watched Mickey Mouse Club House together and helped him with the interactive portions of the show. Every single morning they would rush into our room to say good morning to him and shower him with hugs and kisses and every day after school the first thing on the agenda (even before an after school snack!) was to say hello to their brother and hold him for a little while.

One of the hallmark symptoms of lissencephaly is intractable epilepsy. Every child will suffer from terrible seizures of multiple types because of abnormal brain development. Our son started having seizures when he was 4 months old. He immediately was started on a ketogenic diet, then rounds of steroids then multiple seizure medications and then a valium rescue medication because even after the diet the steroids and 3 seizure medications he still suffered uncountable seizures every day. The third seizure medication we started had some measure of control, keeping his seizures to mild to moderate ones that still allowed us to take him out places but prior to that I felt like I had to keep him prisoner in our home for fear that he could have a severe seizure requiring emergency care right away, like the time I was driving my daughter to her soccer practice and he started having a seizure. He could not breathe and was turning dusky. I had to emergently pull my car over, grab him out of the car seat and administer rectal valium by the side of the road in front of the other children who just wanted their brother to be okay. My children were well versed also on what to do if he had an emergency. My son who was 15 had to deliver his rescue medication at a time I was picking my daughter up at school. Even Sawyer who was only 3 years old at the time knew where to get Gavin’s “special medicine” if mommy needed it right away.

I started hearing of a controversial treatment that was helping a child with intractable epilepsy in Colorado. I actually allowed myself to feel hope in my heart that there could be something out there to help my child’s suffering. To help me with my suffering and eliminate the daily battle of watching my baby convulse and knowing that at that moment there was really nothing more I could do to help him. It was a feeling of complete helplessness and frustration, especially when I learned that controversial treatment, marijuana, was completely inaccessible to Gavin. I felt completely robbed. We were so desperate just to have the opportunity to try medical marijuana for our son. He deserved every chance we could give him to help control his seizures that were destroying his quality of life and the families quality of life. It pains me beyond words to say that he passed away in November 2013 from complications of lissencephaly before we had the chance to fight for his right to try marijuana as a treatment for his epilepsy. His absence leaves a huge chasm. For days after he passed I couldn’t sleep or eat. My mind played tricks on me and I would think I saw him out of the corner of my eye or I would hear him and turn toward that direction only to affirm what I already knew to be true. That Gavin was gone.

It is not an easy task putting into words the feelings and emotions I have for Gavin. How do you fit everything in to convey how powerful and special he is and was? It is impossible to adequately put into words all that Gavin has meant to me. I would love to talk about every memory I have of him and everything we did together. How he changed me as a person and became the epicenter of our family. How he turned his siblings into just as strong advocates for him as I was. We fought tirelessly for him from day one to try to give him everything he deserved. All my memories and good times spent with him alone and as a family swirl around in my head. I can’t pick only a precious few. Instead I will share my letter to my son Gavin who has forever changed me into a better person.

My Dearest Gavin,
When I found out I was pregnant with you I was apprehensive, ambivalent and scared. I did not know if I could love another baby or had room in my already busy life. But as I carried you and nurtured you inside me and felt you move and heard your strong little heart you became my little companion...even then. When you were born and I learned of the challenges you would face it was devastating for me. I thought I had failed you. Somehow my body did not do its job and you would be the one to suffer the most for it. I was not sure if I had the strength or level of sound mind that would be required to take care of all your needs. I felt and thought all those things as I held you for the first time. Something happened inside me as I cradled your precious and delicate little body, my baby, my flesh and blood, my innocent boy. All my pre-conceived notions of who you would be or what we would face together melted to the periphery as I looked in your eyes and held your hand. My love exploded in my heart and charged every cell in my body. I have loved you and will continue to love you more fiercely and intensely then I have ever loved anyone in my life. I vowed to protect you with everything I had and to do the best I could for you. I hope my best was good enough.

Our lives got very busy but at the same time it wasn't. My day's focused on you. I loved singing your good morning song to you every day. I meant every word of it. It was so joyful when we discovered you had a love of music. It was the holidays and your daddy put the Beatles on to listen to while he held you close to the tree so you could look at the Christmas lights. You perked right up and started smiling. My succession of badly tuned lullabies from that point forward never stopped for you. I don't know how you could have enjoyed it but you did so I continued to try to infuse love and fun into my songs as we rocked back and forth. My favorite one to sing to you was you are my sunshine because the words felt so true. That was also the hardest one to get through without breaking down into a teary mess. But you never seemed to mind.

I loved getting you dressed in the morning and doing your stretches with you. Even though sometimes you would give me the face when we were stretching hamstrings. Depending on how you felt we would put your little braces on or just say what the hell and leave them off for the day. I followed your lead and did whatever you felt up to doing. Some days we got a lot of play time in and you were so happy that I dared to hope in my heart that you were getting stronger and everything would be okay. Most days you wanted to rest and have us hold you so you could look at our faces. You always wanted to look at our faces and lock eyes. You seemed like you were drinking us up with your eyes. Even though you could not verbalize I know we had many meaningful conversations that transcended the boundaries of the spoken language. I could always tell by your face, body language and something else that was magical how you felt and what you needed. You exuded a sense of calm that affected everyone around you. We could just be and that was okay.

The last two months or so of your life we did not feed you by mouth because all the seizures and there medicines had taken away your ability to swallow but prior to that we fed you your meals. Even though it took a really long time I did not mind because it was like your way of ensuring you had time to sit down with me and demand my undivided attention. Like most other times, I held you in my arms to feed you and we would look at each other and gaze into one another's eyes. When you were feeling good you would put your hand up for hand holding. When you didn't feel good I would still hold you and hold your hand because I knew that's what you needed most.

You have been my constant companion everyday and every night. We probably held you 90% of the time and I still would hold you if I could. I knew you were just so happy to be with us and we were happy to have you. I may have been sad sometimes but I was never ever disappointed with you.

I never wanted to think about the end and what my life would be like without you in it. After your spirit left I continued to hold you in my arms for many hours. We cuddled you in our great big bed that was your favorite spot.

I remember coming home from work in the mornings and you would be asleep on my side of the bed. Sometimes your daddy would fall asleep holding your hand or cuddling you. I would try to curl myself around you so as not to wake you. Sometimes you were already awake just laying there smiling to yourself. When you would hear me walk in you would look around for me. When we locked eyes you would get so excited to see me. I wondered sometimes how I could be so lucky and special that you would be that happy to see me. 

You filled my heart with so much joy Gavin. I would have done anything in the world to keep you with me but I know that would not have been fair. I knew at some point we would have to let you go but I never wanted that day to come. I know with everything that I am that your spirit is in a better place. Those who have left before us were waiting with open arms to guide you. You are free of the constraints your little body put upon you. Your daddy and I made sure we put your shoes on so you could start running right away. I hope that you will still come back to visit us sometimes. I will never stop loving you. I will never stop thinking of you. You will always be a treasured and cherished member of our family. One day when it is my turn to pass away I look forward to seeing you again. Until that day comes I am going to miss you terribly. We were blessed to have you for longer than I ever thought but for a shorter time then I ever wanted. I hope someday I will feel peace and accept that you are gone but right now I just can't seem to. I know you would want your mommy to be happy and okay so I will try to be brave for you still. I cannot say goodbye. I only know that I can say I know I will see you later. Mommy loves you so much. I will love you forever, I will like you for always, as long as I'm living my baby you'll be.

Forever Yours,