If you would have asked me fifteen years ago if I thought my life would have ended up the way it has, I would have told you no. Honestly though, when do things REALLY work out EXACTLY the way we think they will?

But here I am. Thirty nine years young with a devoted husband and three amazing kiddos. Steve is the bread winner of the family. He works his butt off to make sure we are provided for, so that I can stay home and run things at the house. Often exhausted, he comes home and plays with, bathes, and feeds his children, all before heading back to his job as a first responder. We cherish the days that daddy is home and are forever grateful for all that he does. He is our rock.

Our first born Christopher Joseph is very much like his mom. He is seven going on twenty and thinks he knows EVERYTHING (that is where we slightly differ). He prefers indoor activities more than almost anything outside, and is a whiz at math. Reading is not his favorite, but we keep looking for ways to make that more fun for him. He is part of a local swim team, which practices twice a week and absolutely loves the water (and LEGOS). He is smart, kind, and loves his mama so very much, even though he hardly admits it.

Twenty two months after CJ was born, we welcomed our princess, Ella Rose, who is now five. You can imagine my excitement to have a girl in the house. Finally someone to dress up, someone who would let me do her nails, someone who would let me practice crazy hair styles. I know the incredible bond my mother and I have and envisioned Ella and I would have a very similar one. Talking about boys, dress shopping, just hanging out and have an awesome time together. Sure I anticipated a rough couple of teenage years, but it would all be worth it.

Life had different plans for our Ella Rose. She was born with a brain bleed and from there we discovered that her life would not be what we had dreamed. As her milestones were not being reached our concerns were growing, Steve and I took Ella to every specialist we could find. When one didn’t give us any answers, we would try another. From neurologists, to genetic doctors, to developmental pediatricians, to orthopedists, to GI doctors, to physiatrists, to endocrinologists, to therapists, to chiropractors….the list goes on and on, and the miles traveled are endless.

Despite multiple MRI’s, EEG’s, EKG’s, countless blood work, stool samples, urine samples, x-rays, GI tests and evaluations, we are still no where closer to answers than we were five years ago. What we do know is that Ella cannot walk or talk, and because of this we are unaware of where she is cognitively. She is enrolled in a special school program and based on her routine, and just knowing “her”,we are able to fulfill most of her wants and needs.

In spite of it all she has been through Ella is the most amazing little girl. Her smile can light up a room and she knows what she likes and doesn’t like. She has captured so many hearts and her sweet nature shines through on a daily basis. She has made us realize that if she can go on each and every day as though life is “normal”, so can we. To say she is my inspiration is an understatement. She had made me the person I am today. She is my hero.

Due to Ella’s struggles and the uncertainty of knowing why she has them, the family of five Steve and I always wanted was in question. What if we had another child born with the same struggles? Raising Ella has come with its challenges and isn’t for the faint of heart. Were we ready for that again? Ella’s neurologist strongly suggested we stop at two.

The universe had other plans. In May of 2019, we welcomed our feisty little man, Jack Thomas. At almost ten pounds he came out with a bang and hasn’t stop moving since. He is the happiest little boy who loves his mom, dad, big brother, and big sister. Ella has responded so well to having him around and we all get a kick out of his shenanigans. We know having a toddler in the house can be exhausting but having not seen Ella hit any of those milestones, we are celebrating them all. We never knew just how much we needed Jack until he came into our lives. What a true blessing he has been.

I would be a bad pet mom if I didn’t also mention our two fur babies. The old lady of the family, at fifteen, is our feline Princess Fiona. She was with me long before Steve or the kids and is now a very cranky old cat. She enjoys being around the babies but no longer likes to be touched, making for very difficult interactions. Then there is Gibbs. He is our almost four year old Shepard/Hound mix. He drives me insane with his bark, and has some trouble listening, but couldn’t be more loving and protective of everyone in the family.

Based on Ella’s needs and challenges we definitely consider ourselves part of the special needs world. We have navigated medical equipment denials, IEP meetings, logistical challenges, Medicaid, and countless hours at the doctors offices, after months of waiting to even be seen. Because Ella looks like any “normal” child, we have gotten looks and comments from people who have no business saying anything. We have become so much stronger and emphatic as a family and have met the most amazing people on our journey.

I hope to use this blog to help and support other people on whatever journey it is they are facing. I have also realized that people in general are amazing and the community of sharing with others is endless. I have learned so much from people who are facing similar (and different) struggles. No one should be afraid to ask for help because you never know if the person you ask will know of something, or someone, who can change your life.

I am here to listen and help if I can. Feel free to reach out.

Courtney

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