Special Needs Dads Rock

After we received Tyley Sue's diagnosis and she was so nicely labeled as "special needs", I have read a lot of other blogs about special needs children and their moms. The mother is really the only person that is referred to when people talk about the braveness, strength, hope, faith, sorrow, stress, and tears that are shown during the diagnosis and day to day life of a special needs child. People refer to the special needs mom as someone who rises above and is extremely selfless. They talk and act as if she's almost super human.

I've been pretty honest about how most days me and God get along really well and I feel Him enabling me to overcome my chatterbox (the enemy's nay-saying in my ear) and hopefully glorify His name with how I handle myself and my family. I've also been pretty honest about the ugly times where I yell at God and tell him how angry I am, and how he's put more on me than I can take, and how it's not fair, and how scared, empty, and stressed beyond belief I am---yes, I have plenty of those days too. Bottom line is this-without God and my husband I couldn't do this life; which brings me to my point today- special needs dads rock!

My husband has went through the same ups and downs that I have. He has went through the stages of grief right along with me. Some we have endured together,at the same time, other times we were at different stages of acceptance. In the beginning, Tyler wasn't really open to hearing about Tyley Sue's "inabilities". He was always coming to her rescue and to her defense about what she could do. He looked at her through rose colored glasses and saw the best without seeing the ways she was falling further and further behind. Slowly but surely he started seeing what I was seeing and he started accepting that something wasn't quite right. Receiving Tyley Sue's diagnosis and getting answers from her doctor was difficult for him. Just like most other fathers,  he had dreamed of terrifying her boyfriends in high school and  envisioned himself walking her down the aisle and dancing with her on her wedding day. He dreamed of seeing her give her heart to Jesus. He thought about the future and how he would be the first boy she would dance with, how he would teach her how to ride a bike and how to play ball.

Just like me though, when the reality hit, his dreams died and new ones were created. His prayers changed and he now sees her for who she is-not who we want her to be. He sees her beautiful brown curly hair, her dark eyes, her soft skin. He rocks her and sings her favorite songs. He picks her up by her arm and leg and manually "swings" her as she lights up, smiles, and throws her head back. He puts her to bed at night by cuddling her up tight. He brushes her hair and puts it in a pony tail. He feeds her, bathes her, dresses her.  He lights up at the sound of her laughter. They play together, he teaches her, he LOVES her for her.

As a woman, I'm emotional and sometimes weaker than I would like to be; and when we received Tyley Sue's diagnosis I was a mess. I remember specifically while in Maryland for all of her initial major testing there was a moment when I realized a test had been added to her already full schedule for the day. It was an EKG. When I saw it, I knew that something had been seen on her echo-cardiogram earlier that morning and that they were concerned. As I asked to speak with the doctor and they confirmed that her echo-cardiogram was concerning and something appeared to be wrong with her heart, I fell apart on the inside. We were in the lobby of the hospital, I felt like a zombie walking back to the room attempting to hold myself together. As I came into the room and started telling my mom about the results, I fell apart. I have never in my life sobbed like I did at that moment. As I cried and rocked back and forth on the couch in Tyley Sue's hospital room, angry with God for putting yet another thing on my plate; my husband, my ROCK, held me tight as my mom looked on crying with me but saying over and over "it's okay, it's going to be okay".

I only tell this story to show how these special needs dads not only carry the weight of their children's disabilities, but at times, they carry their wives too. In that moment my husband kept locked inside his own fears, concerns, doubts, anger, sadness, and tears; and he allowed me to fall apart and fall into his arms-waiting for his moment to come at a later time. These dads- they have the same emotions that we as mothers have- sorrow, anger, sadness, fear- they, however, feel the societal pressure to keep it locked up and be a MAN! I must say, I am thankful for the strong arms of my husband over the past year, especially. He has led our family by putting God first and loving us all through the good and bad times. It's been tough and at times I didn't think I would make it-and I might not have if it weren't for this amazing man and special needs dad that we are so blessed with.