We have all heard the saying, "a moment changes everything". Whether it be told to us as words of wisdom, in a book we read during college, or on the radio when David Grey hauntingly sang those lyrics...we all know a moment changes everything. Like most people, I always believed my "BIG moments" happened when I graduated high school and college, my first job, the day I met my husband, our wedding day, when I found out I was pregnant, and the day I gave birth to my son. Those are the moments that everyone dreams and thinks about their whole life. Unfortunately, not all the BIG moments are as blissful. Sometimes our big moments can be incredibly difficult. It is in those dark times, that people find their true strength and happiness in life.
One of my big and not so happy moments happened a year ago. April 26th, 2013 to be exact. It was a day I will never forget. It was Jude's first appointment with the pediatric neurologist for his hypotonia. We spent forty five minutes watching as he examined our little Jude. It felt like a lifetime, except for his few impressions of Donald Duck that broke up the silence. After several minutes typing away, the neurologist began to discuss his findings. He started to draw and write things on a piece of paper ruling out reasons why he would have hypotonia. Finally, he explained that the combination of his dysmorphic features and hypotonia means he has some kind of a genetic disorder, and he was going to order a chromosomal array. Everything became silent. People were talking, but I did not hear them. I felt like my whole life was crashing in and yet everyone kept moving like nothing was going on. My body could not keep up with my breathing. I felt like someone had stabbed me. I could not imagine what this meant for my baby, "Why him?" "Why me?" "Why Eric and I?".
After that appointment, the year turned into doctors appointments, therapists, and surgeries. Between Jude's ten specialists and six therapists we were all overwhelmed. Then when he was hospitalized in May for aspiration pneumonia, June for MRI and bronchoscopy, October for malnutrition/GERD, November for PE tubes, nissen fundoplication, gtube placement surgery, and April for emergency surgery to create a new gtube site and removal of part of his damaged stomach. We were sad and felt helpless. Most of the time I kept asking "Why?" "Why us?" "Could I have done something different when I was pregnant? Could I do something more than what I am already doing?"
Throughout the year, I had a lot of support and encouragement from family and friends. I attended support groups, read lots of stories/blogs about parenting a special needs child, and I talked a lot with Jude's therapists. I started focusing on how happy Jude was everyday. I started to feel happy with his progress and everything we were doing, but I still had days that I felt guilty and sad. One day we were all sitting in church and the reading said "His disciples asked him "Rabbi, who sinned, this man or his parents, that he should have been born blind?" Neither he nor his parents sinned, Jesus answered "he was born blind so that the works of God might be revealed in him." It was true and so was all the encouraging words from family, friends, and other parents. Everything that happened was not something we had done wrong. It was not an awful situation. (Don't get me wrong, it hurts to see Jude when he is in pain. It would hurt any parent to see their child in pain). Jude having a genetic disorder did not mean that something bad had happened. In fact, we were blessed. We were given this awesome child (as his dad would say) who always has a smile on his face and is so positive about life. Once I started focusing on the positive things happening with Jude, I found so much happiness in our simple days at home. Before I had Jude, I had my DVDs alphabetized in ABC order. Now I leave the DVDS and toys all over the floor because I am so happy. I have a little boy that works so hard despite his setbacks and still learned to crawl. I don't think I would have ever stopped and considered how truly amazing a mess can be!
What seemed like the worst moment of my life, ended up helping me find my strength to fight harder for Jude and enjoy the small things. I am forever grateful to him for giving me that gift. Eric and I are so blessed to always be reminded of the small moments and a smile that brings out the best in every moment! :)
Sent from my iPhone
