This is a subject I've longed to write about for a very long time. I kept rolling it over in my mind because I really didn't know how to write it and make it sound like I wanted it to sound, but I am going to try. This is a story about a boy who moves at a slower pace than most. It's about a boy who has taught me so much about love. This story is about Tanner, His life, Our life.
Some over twelve years ago a little boy was born, his diagnosis of Down Syndrome left us feeling heartbroken for months. I will never forget the doctor bluntly telling me that he unfortunately had Trisomy 21, I thought it was a death sentence. I gently handed him back to the nurse and walked out of the NICU. The days of agony and grief that followed will only be truly known by my mother who spent her days and nights trying to comfort my broken heart. I wanted Tanner to be "normal". He was eventually released from the hospital and we were able to take him home to meet friends and family. As time went by I realized that he was a blessing, a perfect gift that God had given me. The diagnosis no longer controlled me. I embraced it with determination that he could, and would do amazing things. As time went by I also realized that our family was different, my child was different therefore it made our lives completely different than any of our friends or family. When Tanner was a baby I spent my days caring for him, the PT at the hospital showed me some home therapies I could do to help with his low muscle tone. When holding him we had to make sure and support his neck because he had very little control or strength in it. We opened our doors for therapists to come in and do all they could do to help him. As he grew a bit older and started walking I then had to watch him constantly to make sure he didn't wander off. Then Perry died, life suddenly became even more challenging than ever. Thankfully I had family I trusted to help care for Tanner, and we all navigated through the ups and downs together. Tanner finally reached an age where we would attend birthday parties. I soon realized how much I hated attending these parties...let me explain - I go to a party and while all the Mothers set and visit while their children play, I follow my son around trying to help him climb up the toys while the other children romp around climbing, playing, jumping, and running (many much younger than Tanner) I look around and suddenly feel completely isolated, I am alone, Tanner is alone, it's becomes just us attending the party - the party comes to a close and I meet back up with the mothers and bid my farewell, go to my vehicle and help Tanner in while tears are blinding my eyes, lean over the steering wheel and get my composure enough to get out of the parking lot and drive home. So often I simply make an excuse and we don't go, I don't want to face the isolation I feel. I go to a function at a park, at someone's house, at our church, I never rest. I have no idea what it's like to pull up a chair and visit like everyone else, I'm constantly on high alert making sure Tanner is ok. Ok so let me explain that part. People don't understand why I have to watch him so closely. I had one individual tell me not to worry, just let him go, it'll be ok - no actually it wouldn't be ok. Opinions and people's ideas hurt to the core when they have no idea what they are talking about, it also makes me feel like I am not doing enough when I am trying to be the best mother to Tanner that I can possibly be. Tanner has ran from me on way to many occasions to even remember, he has took off on foot and headed down the road, he has crawled out of our house windows multiple times, he has hid under the house, got in vehicles all the while while I was trying to watch him as closely as I possibly could. If I didn't take the time to check on him every couple of minutes, I might not would even have him with me today. I love this boy so much that you don't dare think I would risk taking my eyes off of him and just let him be. Camping trips, recreational outings are also very challenging. On these outings we enjoy hiking, bike riding, swimming, etc. Tanner was in therapy for years, they worked and worked to get him to learn the concept of riding a bike, Dathan and I have worked and worked with him - we've spent hundreds of dollars on bikes, special bikes to help him in this area but to this day Tanner does not ride a bike. I will never forget being on a camping trip with several people and Tanner setting in the camper looking out the window while his friends jumped on their bikes and rode off. Fellow campers may have thought I was unsociable, but actually I felt totally isolated because we couldn't join in on the festivities of the trip. I wasn't upset that the others were riding but I suddenly felt lonely, he was lonely. I am not complaining, I want the kids to ride off and have fun on their bikes, I really do. Tanner has matured and we have seen him become more trustworthy in many areas, but our lives are still completely different than any other friends that I have. Tanner can read, he can write, he can do some pretty amazing math figures without any assistance of any kind except his little fingers he uses for counting. Tanner has his own room, his haven, his fort. I go in there and set down beside him and pick up his iPod, I see where he has FaceTimed 12 friends in a matter of 3 minutes. I see where he has texted my phone a picture of a red four-wheeler that he claims is his and he has it for sale. I see where he has put a picture of his new baby brother Lincoln on his iPod screen saver, also where he has texted multiple people begging for someone's mailing address. I walk out of his room and let a few tears fall off my cheeks and I say this is his world, his world, his life and I envy it. He comes out of his room with a smile on his face and asks for another milkshake and bounces back in his room and only worries about getting that address that he asked for or who will buy that imaginary red four-wheeler, while his mom is worrying about the day when his buddies are jumping in their trucks with their girlfriends and riding off into the future, I picture him standing and looking on as their ways part and he goes home, goes into his room, his haven, his fort and picks up his ipad and sends another friend a text - and goes to bed with a smile on his face while mom is in the other room with tears rolling off her face knowing this is his life, our life, and the reality of it is, it's a beautiful life. I have come to the realization I will always feel lonely in the place I am in, I will always feel some isolation, and I know my home is the place I will feel the most comfortable, our haven. I look at Tanner and say if only every family could be blessed with a child with Down Syndrome, but I realize there are only a lucky few that are! I will gladly accept the lonely days that come to be one of the lucky few, don't you ever think for a second I wouldn't! Tanner has an amazing support group of family and friends, and some amazing cousins that will slow down and wait for him to catch up, they will stop and enter into Tanner's world, and spend the day. Life can be tough, it can be sad, the tears can flow but at the end of the day I look at Tanner with a huge smile on my face and say, thank you God for picking me, choosing my family, and blessing us with an amazing boy who's name is Tanner! My mother made the statement to a nurse at the Hospital where Tanner was born that she felt God had something special planned for Tanner, and she was so glad to be a part of it.
This blog post was not a post to complain, to say set with me when we are together, make your kids only do what Tanner can do, not at all. This post was to open up to you his world, our world. To let you know why sometimes I don't show up, or sometimes I disappear. This little post only covered a tiny, tiny part of our world. Our amazing and beautiful yet sometimes extremely difficult world, but a world we would not dare ask to be different. This is our life, his life, a beautiful life.
