Loving Haylee: The Gift Of A Special Needs Child

Today is my daughter Haylee’s 11th birthday. From first glance you would see a typical pre-teen girl. She has long beautiful hair and is always smiling. She is a girly girl and loves spending time with her friends. She is always experimenting with my makeup and singing along with her favorite songs on the radio. Typical girl stuff. My daughter however is anything but typical.
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When Haylee was six months old we started noticing little jerks in her face. Being a young mother at first I wasn’t very concerned. She was a very happy baby and I thought she was just doing some weird baby movements. The jerks were so small that if you weren’t watching close enough you would have missed them. Unfortunately the jerks started to progress so I took her to a doctor who seemed very unconcerned by them. By the time she was eight months old the jerks became very frequent and after seeing many specialists and having several tests ran I was told that my baby girl had Infantile Spasms. Which is a rare form of epilepsy. I remember feeling complete and utter fear as the doctors began to tell me the prognosis for children with these types of seizures. Although the seizures are small, they are very difficult to control and have devastating consequences. Most children are left severely mentally disabled from these seizures. Since that time we have also found out that Haylee has cerebral palsy, she had a stroke in utero with damage on left side of her body, eye damage from stroke, OCD, and a cyst on her brain stem. This was a lot of devastating news to take in. These types of seizures were not just a once a day occurrence or a few times a week. They became so severe that anytime she was awake her body was having spasms. When she slept was the only time her little body had a break.
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Her development completely stopped and she was in the hospital frequently. I will never forget a very important conversation with a woman who has earned the title of Haylee’s “Aunt Audrey”. We were in Children’s Hospital yet again with many students coming to observe her because her case is not something they are able to see often and I remember feeling tired and overwhelmed from the stress of watching my child be ill and feeling like there was nothing I could do about it. So she said “Listen to what the doctors say but never accept what they say because we have a God who heals”. That’s what I needed to hear. From that moment on I started believing my daughter would be a overcomer. That God would heal her. I can’t stopped being accepted in our lives and I believed with all of my heart that my daughter would start developing. She would learn to walk, to talk, ride a bike, dance, sing, feed herself, dress herself, etc. All those little things that we take for granted in our healthy children but are HUGE victories to our special needs children.

When Haylee was 18 months old the doctors put her on a six-week round of steroid shots in hopes of getting her seizures under control. I had to give my baby a shot everyday for 6 weeks! I was desperate for her to get better and was willing to do what needed to be done. It worked! It brought the seizures down to a level that they could now be controlled with medicine and my baby began to develop. I will never forget the pride I felt when she sat up on her own for the first time. She didn’t go about it the typical way most babies sit up. The girl had been doing crunches repeatedly until one day she made it all the way up! That strong-willed spirit has brought this girl a long way! She is my little fighter and I still feel that same sense of pride every time she conquers a new milestone!
image Now at age 11 she has already accomplished more than any specialist ever gave me hope for and I completely give all credit to our Lord and Savior! I do not believe if we hadn’t spent all of these years praying for Haylee’s healing that she would be were she is at today. Is she restored to 100% health? No, but she is exactly who God needs her to be and I will never stop praying for her healing. Every time we see Haylee’s Eye Specialist, who has been working with her since she was a baby, he tells me that she is a miracle and praises God. After our first visit with him he told me that Haylee’s vision was like looking through a holy piece of cheese and gave me pamphlets so that I could do research on different schools for the blind. Haylee has had one eye surgery but I’m very happy to say that she is not blind and does not even wear glasses!

My daughter has been a beautiful gift in my life. It’s not always easy though. Her development is very delayed but I know she is an intelligent young lady. She just sees the world differently than we do. She communicates differently than we do. Being strong-willed has its pros and cons. It helps her overcome all obstacles thrown her way but it also creates one sassy defiant little lady! She knows how to throw one heck of a tantrum which more than often occurs in public when she is in sensory overload. I still dress my daughter and bathe her. When we are just going to be around the house, I do encourage her to dress herself, which typically results in pants on backwards and 9 times out 10 the shoes are on the wrong feet, but I don’t mind because I’m proud of the fact that she did it herself! image
School was a struggle for Haylee. Even though she had the most amazing team a kid could ask for working with her, on several occasions I had to go pick up Miss Sassy Pants from school because her behavior had landed her in the principles office. I would find her of course after the storm was over smiling from ear to ear and see a heartbroken principal because I know he was not a fan of having to be the bad guy because of the simple fact that she is such a lovable kid. After much debate and talk with Haylee’s doctors we felt like because of the fact that she is now going through puberty and having a hard time dealing with all of her emotions homeschooling her would be the best route. Luckily for us her school is amazing and lets Haylee be considered homebound. So she is still part of the school system and one day a week she gets to go to school, ride the bus with her brother, see her friends, and receive therapy. We are beyond grateful to everyone who has spent time working with Miss Hay and helping her make leaps and bounds in her development! We can’t thank you enough!

Although day-to-day life can be a challenge the joys always out weigh the hard times. Like the way she loves people without question. She will tell complete strangers that they look beautiful. Everyone in our town knows her and because she doesn’t have a shy bone in her body she happily makes conversation with everyone! I can’t take her anywhere without her seeing someone who she knows and needs to give a hug too. I love the way she loves God. It’s like she has always known him. I believe our unique children have a very special direct link with our Heavenly Father. I love the way she lights up a room when she walks in because she is always smiling and you can feel her happy energy radiating off of her. On summer days I watch her out my living room window while she is walking through the field in a snow-white costume looking completely at peace. She’s beautiful and unique. Unlike anyone I have ever met. She’s strong and confident with who she is. I’m blessed that I was chosen to be her mother.

I want to encourage you today. If you have a unique child don’t set limits on them. Never believe that they will never do something. They need you to believe in them. They need you to pray for them. Most of all they need you to love and accept them for the beautiful souls that they are!

Happy Birthday Haylee! Mommy,Daddy,Haden,&Heath all love you very much!

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