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.

Milestones

This past week I've been reminded of what it's like to see your child reach a major milestone. Our milestones have always been on a super slow track for Tyley Sue, and lately have just kind of been at a stand still it seems like. I have learned to greatly appreciate the milestones-both big and small- that she reaches. I also think I have a deeper appreciation for Elijah reaching his on time and early. As he took his first steps this week, I celebrated! It's so exciting to see him take his steps, use a pincer grasp to pick things up, investigate him toys and play appropriately with them, and to hear him babble and say "mama" and "dada"; these are words we still don't hear Tyley Sue say at 3 years old. I have learned that there is no comparison in my two kiddos. They are each unique and will do things on their own time and I'm so thankful for them both!!

As Tyley Sue starts school this week, she's reaching a new milestone of her own. I would say that my nerves are a little on edge with some fears. Probably not the same fears other mothers have as their kiddos started school this week, but fears nonetheless. I'm super nervous about her putting everything in her mouth and eating non-food items. It would happen on the regular, multiple times a day, if we weren't diligent in watching her every move. I know they will push her, and I pray that they can help her progress. I want her to gain new experiences that will grow her and stretch her; but I want her to be safe too. I'm nervous about her not being able to communicate her needs and wants, and I'm praying that they can be patient as she attempts, in her own way, to tell them what she needs. I'm hoping that the "typical peers" in her class don't hold her teachers back from giving her and others like her the attention and support they need. I know the teachers are nervous about this as well and I pray that they will be able to balance meeting the needs of all the children in her class. As I sit here and type in all my fears and things that I'm nervous about, I'm reminded of how this helps nothing! God has a way of calling me out when I need it, thankfully!  Matthew 6:34 says,

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

And then in John 14 he says:

"Peace I leave with you; my peach I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."

So, I will do my best to quit worrying and just pray a little more about it. I know God's at work in our lives and this is all a part of his plan to reach others using Tyley Sue!