As I mentioned before birthdays seem to be a time of celebration and reflection. Now I am reflecting on the past two years...
I have to say when it comes to Brayden, I have no idea what to expect. Things that I thought would happen in the past couple of years, have not. Things that I thought would never happen, have. This post is hard to write. Hard to admit that I am somewhat disappointed, still shell-shocked and hurting in the midst of the happiness and celebration of Brayden.
I genuinely thought Brayden's development would be further along by the time he was two years old. Yet I felt like I did not really have any concrete expectations for him. Every baby book out there tells us that the most important development happens within the baby's first two years (I know better after talking to other moms of children with severe disabilities). Well here we are at two years and Brayden has his own developmental chart that the steps are so minuscule that it sometimes feels hard to see.
I fully acknowledge and celebrate every little thing that he does but it is hard sometimes not to grieve the things that he cannot do, the things that he misses out on.
His vision is so impaired. Oh how fun it is to see pictures in a story book, the beautiful flowers popping up in spring and mommy smiling so big at him that my face could crack. He cannot eat, at least by mouth. How much fun it is to eat! The taste of his birthday cake or even just baby food. He does not have much control over his body. He desperately wants to sit upright like a big boy but the task is more therapy for him than fun. It exhausts him. We have boxes of baby toys that require interaction from the baby, very few of them can even work for Brayden. Playing is fun, a bonding experience for him with his brothers and family. Finding the right way to play with him is challenging.
We really do not spend our days thinking about the things that he cannot do but as he gets older those things become more apparent.
From year 1 to 2, I must admit has been long. Brayden's great-grandmother said "Oh my, I cannot believe he is two. This year has flown by!" My response, "You have not been in our house. This has been a long year." Shortly after Brayden turned one, we started down the path of feeding tubes. We continue to struggle with the his tummy, eating and gaining weight. Just in the past year, we have had a few hospital stays, 911 calls, many scopes and too many doctors. Brayden medical files just from the last year are huge for only being 2 years old. The doctors know us by first name (never seemed surprised when I call) and the pharmacist knows us when we walk in the door. Brayden's medical issues do not seem to be improving: the tummy and seizures. It feels like we have a temporary fix but not the real solution. I am not sure there is a solid answer to Brayden's medical needs.
When it came time to blow out his candles on the birthday cake, I could not help but think about birthday wishes, my wishes for him. I am not wishing for the big things like walking or talking. However I do wish to one day hear him say mama. I wish he did not have to struggle so much. I wish to take away his struggles. I wish he did not have to spend so much time with doctors. I wish he would smile more. I wish I could hear him laugh. I wish I could find that thing that would make him laugh. I wish for more inaction from him to know what is on his mind. I wish I would feel his arms around me in a big bear hug.
Despite all of these feelings, Brayden is a joy. He is in no way a burden. I love him and will do anything for him. I cannot imagine life without him. We really do live each day with happiness. These feelings, wishes and disappointments are just part of Brayden shaping our lives. It comes with the territory of being his parent. The Lord placed him in our care. The Lord sees us as equipped (with His strength and wisdom) to be the parents of Brayden. The Lord knows my wishes for Brayden. The Lord knows Brayden's struggles. He knows all about the past two years and the years that are ahead. The Lord knows.
Before I formed you in the womb I knew you, before you were born I set you apart.
The Lord knows the plan for Brayden, I do not and I have to trust Him.
Trust in the Lord with all your heart,
And lean not on your own understanding;
In all your ways acknowledge Him,
And He shall direct your paths.