The Cutest Miracle Ever!

He’s handsome! He’s amazing! He’s a miracle, and he is very, very loved! Meet Tyler, and his Mom, Nancy…

Tell me a little about yourself and your family.

My name is Nancy and I am a wife and mother. I am married to Dallas and we have a son who is almost 3. His name is Tyler. We live in Arizona where my husband works as a web developer. I work part time in the evening time and I get to stay home with Tyler all day. I love it. Tyler is a former 25 weeker, and is a wonderful and fun loving ALMOST 3 year old.

Tell us more about your child’s disabilities. Did you know when Tyler was born that he had disabilities? If not, how did you feel when you discovered it?

Tyler is almost 3 and we knew from the beginning that we were in for a long road. We didn’t know exactly what that road was, we just knew it was going to be bumpy! Tyler was born at 25 weeks 3 days gestation where he suffered from grade 3 and 4 IVH. He had to have his PDA surgically closed, has hydrocephalus from his bleeds, ROP stage 3 zone 1 rush disease, and developed craniosynostosis.

Tyler was diagnosed with Cerebral palsy when we moved to Arizona. His 2nd birthday came and went and we held our breath for his adjusted birthday and him to start walking. That day didn’t come like we thought it would. He has not been given a exact diagnosis of what it effects ( ie spastic diplegia, quadrelpliga etc) but we see that it effects his feet ( he is on his tippy toes) and his legs and he favors his right arm. He does use his left arm. He also has a shunt and he has low vision. Some say legally blind, others don’t. Until he gets older we won’t know the effect. He also suffers from nystagmus (fast movement of the eyes). He uses a walker part time and he has braces, but we are currently really tweeking those to get the right kind for him.

When we got the diagnosis we had a name. A name that we didn’t like much. I don’t like the “word” but it didn’t change who he was. That was what I had figured out. I thought a name would change who he was. He was still Tyler. He was still my baby. He just had a name to his “issues.”

You blog a lot about Tyler’s issues, and that is so valuable to me and I’m sure, to others that read your blog. How did you go about making the decision to blog about him? What do you personally get out of blogging about Tyler and his issues?

Because of my husband’s career we have always had a blog. It has changed places many times but we have always had one. When I was in the hospital after having Tyler, Dallas surprised me with the website that we originally had.

I loved that I was able to search the internet and find more people like us. I was able to find so many moms and connect and read that I was NOT the only mom who hated to do therapy all week long, who had bad days and who celebrated the good days. And also people who were a lot worse off than we were, and they had so many wonderful insights to life. I also found that many moms who had wonderful advice and information that was beneficial to me.

I hoped that as I blogged about our days and nights and ups and downs that others would see and maybe find what they needed or an insight or a friend during their journey.

I love blogging about my life. I love letting others know about the journey we have faced. I also love sharing Tyler. He is so sweet and so amazing. I wish I could tell the whole world all about him and let them see him for him and all the things he can do and all the things he will accomplish.

What is a typical day like for you and your family?

Oh my! Tyler is/was a horrible sleeper. He has now gotten under control with meds but he is up VERY VERY early. He gets up around 5 am. We tend to have a therapy first thing in the morning. We try to have an activity, like finger painting and going to the park. He loves to throw rocks so we go out side a lot and do that. He has therapy 4 days a week. One is out of the home. We are currently transitioning to preschool this month where he will attend 3 days a week and having outside therapy at least 2 times a week.

How has Tyler’s disabilities affected you as a person and as a mother?

I have become more aware since having Tyler. I am sometimes a little too sensitive. But overall I am very aware of things. I went to school for child development so it is putting what I learned into real life. I have learned to love unconditionally. My faith in God has changed and I am more thankful for so many things. As a mom I just want him to be happy. I want things to be easier for him and I will do all I can to make that happen. I also want to be a support, a good friend and a place to turn for advice.

What did you do right? What do you wish you had done differently?

I feel that I have been a great advocate for Tyler. I try so hard to make sure he has the best of the best at any cost. I don’t care if my insurance doesn’t cover it or I have to work a million hours, I will get it if it benefits him.

Differently? All the things I would have done different are things I can’t control. I would have kept him in longer. I would have made him have no bleeds. Things that I can’t control. As far as his care, I don’t think I would do anything different. He is perfect, issues and all.

What do you want other parents fighting the same fight to know?

I want other parents to know that you are the best advocate for your children and that a book can’t tell you what will and won’t happen. It’s also ok to be upset about what is happening to you and to your child. Somedays you might even want to give up, change it and be done with it. That is ok. There is also ALWAYS a way to make it happen. It might not be exactly what you thought it would be but there is always a way.

Is there anything else you would like to share?

Tyler makes everything ok. He makes life liveable. He is so much like his dad. (Not just in looks but in attributes) His laugh is contagious. So many people meet him and say the same thing, that there is something about him. He is a remarkable child. I know that even with struggles that he is mine and that no matter how old he gets he will always be my baby.

Having a son that has a disability is hard. I want him to see better. To walk better, to do all the things a typical child does. It takes so much effort and time on his part. BUT HE DOES IT. He walks a few steps more every day, he signs more, he communicates and he has amazing receptive cognitive development. He is truly a miracle in every sense of the word. Thank you for letting us share HIM.

One thing that we also live by. Things don’t get easier they get different. Some days they are really hard but things are so different that you can roll with the punches much better

Make sure to visit Nancy and the handsome Tyler at her blog, Miracles Happen!

Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.

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