I was six days shy of my third birthday when my little brother Matt was born. I don’t remember having any anticipation of him being born. I don’t remember having any expectations, or the day he came home from the hospital. I don’t remember holding him for the first time or looking at him. I have no memories of a little baby crying in the other room or people coming to oooh and aww over our new addition. As far as I remember he was always there, always my little brother, always Matt.
There is a well known essay called “Welcome to Holland.” It was written by Emily Perl Kingsley in 1987. She writes it to try and describe what it is like as a parent to give birth to a child with a disability. I am not a parent and not a parent of a child with a disability, but I have always liked the way she describes it. I find it a good explanation of what her experience was, going from what she had expected to what she received. I can’t speak from the experience of a parent, I can’t pretend to know what a parent would feel or the stages of grief and acceptance they would go through. I write as a sibling, a sister.
If you followed the link to the essay above (it’s pretty short and well worth the read) you will understand what I mean when I say all I ever knew was Holland. I didn’t know that Italy existed until I was older. I didn’t know that Holland wasn’t the original destination. I can still remember the moment I first was made aware that Matt might be “different” or that there might be something “wrong” with him. I was in the third grade and my mom and Matt had come to pick my older brother and I up at school. He was always quick to give hugs, whether he knew you or not, you were going to get a hug and a big one at that. On the playground with a friend, I saw them coming and thought nothing of it. As could be expected he ran up to her and gave her a giant hug. She didn’t hesitate at all but quickly pushed him away and said “EWWW”. I didn’t get it at first. Was he dirty? Did he need to wash his face? Had he eaten something sticky? He was a little boy after all. Then it sunk in….she had pushed him away because he had Down Syndrome. She had pushed him away because there was something “wrong” with him, because he was “different.” It was the first time in my life I remember noticing that he was downs. I was shattered. Everything had changed. Everything was wrong. Or did it? Was it? Had anything really changed at all?
Down Syndrome is often described as a “chromosomal accident”. There is no known cause, although there are higher risk factors, it just happens. Something occurs at conception and a person has an extra chromosome # 21. It is just an accident. Or is it? I dare anyone who ever meets my brother to look at him and call him an accident. He is very much on purpose.
The name Matthew means gift from God. Ask anyone in our family and I would think that is the word you would hear over and over again used to describe him. A gift. Matt is covered in the fingerprints of God. He is fearfully and wonderfully made. Psalms 139:14. I look at him and I can see he is exactly what God wanted for him to be. I believe that God looked at our family and knew exactly what we needed to complete us. I can’t imagine the mess we would be without him. From the moment he was placed in my parents arms, from the moment the doctor told my parents they should consider putting him in an institution, from the moment they knew life would never be the same, from that moment we have been blessed. I can tell you from watching my parents all my life, that having a child with a disability is a challenge, it can bring great heartache, intense worry, questions of the unknown, an uncertain future and it can bring you to your knees in prayer. Then I am sure I brought all of that to my parents as well. I could never thank my parents enough for loving him as they loved us. For giving him the guidance and structure he needed while understanding the way he thought or functioned. For forgiving him for cutting snake skin boots in half because they said they were too big. They were extremely fair with all of us which is so different than being equal. They knew what each of us needed, when we needed it. We were all unique, different in our own way. They never made Matt standout as their “special” child. He was one of their three loved and treasured children. His sense of adventure and lack of fear may have produced a few more gray hairs than my brother and I but he was there child. To this day their care for him, enjoyment of him, love for him, adjustment to his needs, and sacrifice for him as they have always done inspires me.
I can also tell you that Matt has brought unmeasurable joy. He didn’t come in the package that maybe we all thought he would come in. He wasn’t what was expected or what was planned for. He wasn’t everything that we as a family hoped for. He was more. So much more.
I have always said that if I could have just half the heart that he has I would be blessed. I have never seen a more true picture of unconditional love. He is accepting of all. To the point of us having to build fears into him for his own safeties sake. He is passionate. He loves deeply, fully, unconditionally. When Skylar was voted off American Idol last season he wept with pure devastation. His heart hurt because his heart loved. He is silly and funny. He loves to play jokes on people and has a laugh that will make you giggle from the inside out. He is impressionable and wants to be just like his big brother. Which is always a great thing to be. He is careful and meticulous. He is set in his ways and routine and likes things just so. He is tender and caring and hates to see others hurting. He wants to be famous and believes that he will be some day. His greatest dream is to be a college football coach and he often practices his speeches to the team on the back porch. He is a country singer at heart who will one day have his own album. But for now sings to us on our birthdays and special occasions. A performance he will spend all day practicing. Those performances may make small animals run for cover but they make our hearts swell with pride and our eyes fill with tears.
He is an example of forgiveness. He is able to quickly and completely forgive others no matter what they have done to him. I long to be a person who can forgive the same way.
Every football player who looks at the tv camera and smiles, is smiling and talking to him. He is NFL’s biggest fan. He can tell you every player that is traded or drafted. He knows every time a player or former player passes away. He grieves for them. When his team wins he is ecstatic, when they lose he is crushed. NFL draft weekend is bigger than or as big as Christmas. He loves to give gifts and receive them. Anytime a family member has a birthday I can expect a call asking me to take him shopping for a gift. He also wants you to open his gift last and he can’t wait for you to give him a hug and tell him thank you.
He loves kids and I believe he has a gift with them. He is the very proud uncle of four amazing little boys. He loves them tenderly and deeply and they love him. He doesn’t like them to get out of line and likes to keep them safe. He worries about them and will tattle to their parents if they are doing something unsafe. He will hug them and hold them, but is afraid to carry them up and down stairs for fear he will drop them. He will teach them how to play sports and joke around with them. He will hold their hands as they cross a street or walk through a store. He loves to show off their pictures and tell stories on them. He gets excited when they come for a visit.
He is an amazing brother to my older brother Scott, his wife Wendi and myself. We are proud of him, honored to know him and blessed to have learned from him. He has helped to shape who we are and has given us more joy and laughter then we could ask for. He is in many ways the heart of our family. At times I let my mind wander to what it will be like when he is no longer with us. But it hurts too much, I can’t breath, I can’t imagine it, I don’t think I could live through it. Then I am reminded I can worry about that day or live in this one. He’s here, he’s vibrant, he’s fun, he’s loving……he’s here. God knew what we needed when he gave him to us and he knows what we will need when we don’t have him on earth anymore.
I know without a shadow of a doubt that I am the person I am today in large part due to him and his presence in my life. He has taught me to love more, trust deeper, dream bigger, laugh louder, smile wider, cry more freely, teach more gracefully, pray more faithfully and hurt more completely. When he hurts I hurt, when he struggles I ache, but when he smiles my heart smiles with him. To say I am proud of him is the understatement of the century. I am proud of him not because he has Down syndrome, because his disability doesn’t define him. I’m not proud of him because he is “different.” I am proud of him because he is Matt, because of his heart, because of his joy, because of his love, because of his forgiveness. I am proud of him because he is. I hope each day to be more and more like him and I hope that I can make him proud as I strive to be the woman of God that God wants me to be.
I’ll never find the words to thank him for all he is in my life. I’ll never have the words to tell God thank you for choosing us, for choosing me. I am the luckiest girl in the world, because of him. I love him and I hope the world knows how much better it is because Matthew Allen is in it.
Lord it’s in your hands!