Friday, March 21, 2014

For Johnny 3-21-14

Today we celebrate and honor those individuals who possess an extra copy of their 21st chromosome. While I have met many individuals that have Down syndrome over the years and many more so this past year, only one holds my heart like my son. 

At this time two years ago we were just beginning to tell family and friends that we were having another sweet baby. We knew our lives would change in having him, but we didn't know how. When his potential diagnosis came along, we nearly fell apart. All we could see were walls, barriers, and road blocks. How were we to travel this road with the little one we loved so much?

We had much to learn. We became more vulnerable in seeking help and leaning on others, but still grew in strength and reliance on our own knowledge and instincts in raising our children. We recognized our own ignorance about an entire world we knew nothing of, but used that to fuel our thirst for learning about our son's condition, methods to help him, and people that forged ahead of us. We mourned for the hopes and dreams, expectations in reality, we had for this child, but became aware of the fact that Johnny has his own path and will have his own hopes and dreams to strive for. Our eyes became open to many more of the important aspects of life, we relished in the smallest of victories, and yielded much to God, grateful for His presence in our lives. 

We didn't know much, but we did know we were trusted with this sweet baby. We were given him to love, to help him grow, to teach, and to lead towards a good life. 

In our work, we realize how much he has taught us about love, how he has helped us grow, how much he has taught others, and how he leads us towards a better life. 

Johnny loves unconditionally and with his very being. He can't help but love, even when wronged. When he gets hurt by his sisters, it's only a few seconds before he is laughing and grabbing their faces. When crying after blood draws and shots, it's just moments before he smiles and grins at the nurses. When mad at mommy and daddy for taking away items, it's an easy diversion of favorite songs followed by giggles and declarations of more. He knows nothing of grudges, but only of forgiveness and this is a lesson even I struggle with. 

Each time I have grown a child and held them in my arms, my heart has grown. Most mothers would agree. With Johnny, I felt like the grinch, with my heart growing three sizes that day. With Johnny, the world tells me he isn't perfect, and my heart says, I love him in spite of all that. I have grown more accepting of differences and abilities. I have grown as a mother, recognizing uniqueness and needs in each of my children. I have grown as a friend, recognizing uniqueness and needs in each of my friends. 

Johnny teaches just by being him. He teaches how similar kids with Ds are to other kids. He teaches that there is a spectrum. He teaches that, in spite of having special needs, he likes books about puppy's, chasing after balls and Tupperware, and that there isn't much better in life than carbs to eat. He teaches that low muscle tone doesn't mean that he isn't strong enough to make his OT work as hard as he does in their sessions. He teaches that just because he signed something all weekend doesn't mean he will replicate for his Speech therapist. He teaches that at the end of the day, snuggles, hugs, favorite songs and stories, and kisses are all most kids need. 

I can't even say what a better life we have with Johnny in it. Our life is measured differently now. Instead of goals and deadlines, we measure in making each other laugh, smile, and how hard we worked that day. We do still have goals, lots and lots of goals, but they are a part of the big picture instead of our main focus. We make sure that our work and push towards milestones doesn't make us lose sight of spending time together and making sure we are happy and well adjusted. He has given us balance. 

In church this weekend, I attended a parenting session. In it, we were reminded what miracles our children are and that God wants us to give "these precious lives meaning." I feel like we have a special gift in being parents to a child with special needs. If we look to heaven, Johnny has so much figured out about grace, love, determination, kindness, and how we are told that heaven will be. Sometimes, I don't feel that we are here to give his precious life meaning, but that he is here to give our precious lives meaning. 

(Little dude, Big plans)

That extra chromosome means that our life sometimes looks different. But I wouldn't trade that life for the world. 

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