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!

Pure Joy

As I listened last week to a sermon before work from Steven Furtick, I  thought about his words "faith is strengthened by trials". This is so true and especially resonates with me during this time in our lives. He talked about how things don't get strong on their own. Think about it. A muscle doesn't get stronger unless you challenge it. A marriage is stronger when a trial or hard time is overcome. Relationships thrive and grow over time and through experiencing the ups and downs of life together.

The trials we have been enduring haven't been walked through by Tyler and I without questions, doubts, fears, anger, and just downright ugly times. But, that's okay....our faith won't waiver, it's just getting stronger. One of the things Furtick spoke about was the "heros" from the bible. Abraham endured some pretty low times-yet he was the father of many nations. I mean, think about it, he slept with his wife's servant in order to father the child that God had promised him. Because it hadn't happened in the time frame Abraham thought it should have, he grew impatient, and went on with his life how he wanted to, instead of waiting on God's timing. Were there consequences? Yes. Did it ultimately grow him, and strengthen his faith? Yes. Did God turn his back on him? No. It was a faith builder. A relationship strengthener. And ultimately, despite his mistakes, he went on to give his best effort and follow what the Lord asked of him. If you only looked later in Abraham's life and the legacy he left behind as the father of many nations, you might think it was easy, that he just had it all together and never had hard times or times that really tested his faith. But that's not the case for him, and it's not the case for most of us today.

I guess this message he spoke on really made me think about where we are today and where we've been over the past years. Tonight, we looked at a video of our engagement-we were young, skinny (I just had to throw that in there!) and life was easy. We had not faced any really hard times in life and we only had high hopes and dreams for our future. At 19 and 21 we had no idea what was ahead for us. My dreams were typical of a 19 year old newly engaged girl-we would get married, have children (without any difficulty conceiving), have good paying jobs, and live in a pretty house with a big wrap around porch and white picket fence.

 Is that how my life looks today? Some of it, yes. But the details, namely the not so good times, that have been woven in over the last 10 years are the things that have strengthened our faith and grown us closer together and in our relationship with the Lord. Someone told me the other day "You are so strong, and you make this look so easy". It was a compliment, but it was almost hard to hear.

It's not easy, and some days I'm anything but strong. Some days I panic to the point of going numb with fear of our future and have to call my husband on my way home from work to cry. Some days I just feel done with it all and want to throw in the towel and run away. Some days I pick fights with my husband about how dirty the house it just because I'm angry and need someone to take it out on. Some days I feel completely overwhelmed with the amount of time it takes to stay on top of the medical bills, the doctor's office phone calls, the insurance company appeals, the therapy appointments, and then just life in general as a working mom of two and wife. Then, there are days where I'm stronger and Tyler has the same bad days I had. We always laugh at the end of a bad day about how thankful we are that at least one of us stays sane and can talk the other one off of a ledge if we needed to!

During the hard days and times I turn to my husband and God in prayer and usually within a short time, I've been lifted up and reminded of the good in my life and the fact that this journey isn't without a purpose. I usually remind myself of Romans 8:28:

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. 

I know that God is working things for our good. His good probably doesn't look like my version of good, but His way is always better and come eternity, I will look back and see how it all fits together. In James we are also told to, Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.


It's so hard to "consider it joy" at times. I think we equate joy with happiness and that's why it seems so hard. But we have to remember that happiness is directly related to our circumstances whereas joy occurs regardless of our circumstances. 

I'm so thankful for God's word to renew and lift me when times are tough because this life as a special needs mom, wife, and nurse isn't always easy nor does pure joy come without work.

Learning how to grow a man...Lessons from a three year old.

Lately, I've thought a lot about my son and what's in store for him in the future. I've wondered what kind of person he will be and how the differences in Tyley Sue's life will make such a drastic difference in his. I've thought about the "negative" things; like how punishments will be different for them both, and he may not understand that at first; about how expectations will be different for them both, and, again, he may not understand that at first. I've thought about the fact that there will be times of embarrassment for him-I think that would only be natural at times when you think about how she may never "act her age" when in public-or anywhere for that matter. I've anguished over the thought of him feeling less important due to the immense time it takes for us to help Tyley-and it may always be that way. I feel heart broken when I think about all of the needs Tyley Sue has and wonder how I can be enough for them both. How can I provide every opportunity for therapy and progression, make every doctor appointment and IEP meeting for her and still never miss a beat of a "normal" life for Elijah? It will be done, by the grace of God;  but I never want him to know the struggle. I never want him to feel like he's in second place. I never want him to fell less important. Because he isn't! He's such a joy in our lives- and not that our Sue Sue isn't; but there's no way to compare the two! One is not loved more than the other-just differently.

I not only think about the possible negative things, but I also think about the little boy that I'm raising to one day be a man....and how I have the perfect ingredients to make him a man of God, a man full of compassion, love, understanding, and empathy for others. A man who is humble and strong, a man who doesn't think twice about putting others before himself, a man who is always looking out for the good of others and to serve others. I think about how these qualities will ultimately make him one heck of a friend and an amazing husband and father one day.

I think about his future wife and right now, how he's already stolen my heart, and how he will steal the heart of his sister soon enough (currently, she doesn't pay him much attention, but I think that will change as he interacts with her more in the future); and I know that there will be a girl one day that God has designed just for him and she'll fall, for my son....for my Elijah. She'll fall for the man that he is; but what she won't see is that he started out as a toothless, grinning, slobbering little boy who came in mouth open wide to give his momma some loving. She won't see him teetering around trying to find his balance to walk. She won't see the way he looks at me unlike anyone else. She won't know how much love I have for him until she has one of her own. All she'll see is the man that his daddy and I are raising him to be....and the man his sister is raising him to be.

When we were in Maryland with Tyley at the NIH after all the testing was completed on Tyley and we met with her doctor to discuss all of the results from that week's testing, and she asked if I had any questions. The only question I asked was,

 "How in the world do I balance hope and faith for her healing, yet remain realistic about her condition and prognosis at the same time?"  

Her response was telling me what to expect-so I hopefully wouldn't be disappointed. She also went on to share with me about other special needs families and she mentioned thinking about future needs for Tyley physically as well as financially for. She then looked at me and told me to remember Elijah Ray and what role he plays in all of this. Her words pricked my heart as she told me that I would have a son who would look at life differently, see people differently, and be a much more compassionate person because of his sister.

So, my son's future probably looks a little different than most of your sons; but it's okay. We all are given different life circumstances for God to use to shape us. The life that God chose to drop Elijah into is going to be hard at times, but this life, namely his sister, will prepare him for so much. I doubt that he will ever be the boy partaking in the bullying of others who are different. I dare to say that he will be the one to stand up for them. He won't be the one to snicker behind the back of the class mate who falls behind because of their disabilities. He won't be the boy who mistreats girls because he will know what it's like to take care of a girl who can't take care of herself and he will see his Daddy do the same for his sister and his mother. He will be the epitome of  love and compassion-really showing what the love of Christ looks like. He will know what it looks like to love with an agape love- no strings attached, no expectations. Much of the world loves because of what others have to offer.  I would actually say that most of us love that way. He will learn to love when nothing is given in return at times. What better way to learn how to love his future wife than that?

All I know, is the woman designed for my baby boy is already being prayed for. She will have a man like no other, and he will love her and take care of her and lead her because of all of the practice he will have in his lifetime leading up to her. His sister, especially, is teaching us all so much. Lessons we would have never learned without her. Lessons that have and will continue to grow us, strengthen our faith, and allow us opportunities to teach others.