Soon after being diagnosed with multiple issues, we noticed him playing with his toys by himself in like a corner. He wouldn't want to read, write or watch much tv. He would just sit there. He LOVED company though, our dog Bailey and he would end up loving to go through car washes. In order to make him happy we would get gas and head to the car wash, one of his favorites as he would ask when we got gas. Elijah would point in the direction and of course, how could we say no. Even if the car was just cleaned, it made him happy. It wasn't all like that but he grew into liking the different colors inside the car wash.
Just before he turned three we have moved out of state. Where we were living was beginning to be crime infested, prices to high to live comfortably, and prevent us from providing a better life for Elijah without drama and better job opportunities. Prior to us moving, we checked to see if the schools would be a great fit for Elijah and that they could offer him his services. They said yes and explained to us that they would have room for him in a classroom if he would attend school down the street from or home. I completely obliged when discussed the pros and cons and what did we expect for our son. In the summer we were planning on going to tour the school right after school left as we knew they weuld still open. The teachers were not there and it would make it hard for the school to show us anything. In the back of my mind, a town crime free, low cost, schools looking great. What else did we want?
We packed and moved to our new home on December 3, 2019. Everything was going well until the true fight began. Call after call, message after message, email after email and nothing. Until June 2020 when we heard something. It was the county calling about confirming Elijah's transportation and enrollment. Now to understand this and not laugh to hard. In June he had his IEP meeting and was found to NEED services but no classes in our area were available. Secondly, the transportation offered to pick Elijah up at 5:30am to drive 90 miles from our home. The only school that would provide Elijah's services. That was not going to happen and it didn't. This lead to homeschooling until the school district called and said with Covid-19 they schools will be closed and students will be educated virtual, did you still want to homeschool? I told this lady of course yes, I would like that. He was enrolled. Started September 2019 Pre kindergarten.
Everything went well that first year. He progressed well and did well being virtual so I considered the following year as well due to Covid-19 but the school Elijah attended wasn't providing online classes any longer and that they were going back to school. Being so far away, this was not a choice. I contacted the local elementary school and explained to them what is going on, but nothing still came out of discussions and made us feel alone. He is full time homeschooled, second year of pre-k, waiting for full time kindergarten.
This year, 2021-2022 was really hard. Balancing being a single full time grandparent, working , school, taking care of EVERYTHING, it is a hard task. Elijah was starting to sleep more through the night sometimes but not always. I was working graveyards split shifts because I did not know if that night he would be up and I could not work with a child screaming in the background. Once I noticed he was sleeping more soundly I went part time and gave up split shifts. Elijah would wake up between four and six times on a typical night and I was too. No naps and just ran the day like any other day. It was so hard because if the nights he didn't sleep I didn't either nor did I work. Grandpa was working but he wasn't home much being a truck driver and all.
Making meals for Elijah was VERY difficult and still is. Picky, picky and more picky. His favorite foods are child-like and normal for his age: cheeseburgers, chicken nuggets, pizza, ice cream, cookies French fries and grilled cheese. Up to this day will not eat veggies but is crazy about his fruits. When Elijah was little he used to drink a gallon of milk a day because he refused to drink water. Today, he is finally drinking water but "flavored". We call is berry juice AKA Propel. We didn't supply much juice and if we did it was watered down. He was just a very picky eater. Elijah turns four years old and a new set of issues arise. Just when you think it is all slowing down, it speeds up.
After the move in December 2019, things were looking up and all was going well. Elijah's rashes stopped, he wasn't sick, he started sleeping through the night, eating a little more, speaking more and doing things that made him happy. Once he started his first year of pre-k virtual online he was picking up things fast and learning several techniques of a school environment or at least what it looked like or seemed to be in his mind. We get situated and the doctor appointments have yet to cease, they are still monthly / bi-monthly. We have to travel from our state to Arizona, in which is about five hour drive. Elijah has a developmental pediatrician for his autism, regular pediatrician, optometrist, dentist, OT and speech therapist, eating therapist and ABA therapy and in home care. This did not include runs to the emergency room, urgent care or second opinions.
As our family heads into a new year of uncertainty, this boy has lit up rooms and smiles on faces all around. We clearly didn't see what was about to happen with the love he gave everyone he saw and met. Elijah has had a circumcision at the age of 2 years old due to chronic UTI's. Ever since the surgery, we have not had one. What a milestone to achieve and we didn't take that for granted. Elijah was all the time sick. Running fevers, earaches, hear exhaustion, colds and just not feeling well. This was constant with no end in sight. We had no direction as to why or how. About six months later, the year 2020, Elijah has his first eye surgery. It was to fix his lazy eye. We had the surgery and had to go back because they over corrected his eyes. Therefor, left two eye surgeries and still wears glasses. Giving not much of a break, Elijah was having bad teeth problems. The teeth problems were not form us not caring for his teeth or neglecting them but from when he was in the mother's womb. The dentist has said it was very common considering the circumstances but it still didn't make it any easier to not question.
This child has had a real run of bad luck in just four years. I can not help not trying to think what is next or what we are missing. We take it day by day and minute by minute. We have a long way to go but I know we will get there. For every problem there's a challenge, for every challenge there's a solution. With 5 surgeries, continuous medical issues that are abundant diagnoses and the team we have, there is no giving up. Elijah needs us.
Elijah is so strong and loving. He comes up and gives you hugs and kisses and tells you he loves you. He shares things with you and loves to be around you. This boy is our miracle and my angel. Elijah has overcome much more than most before the age of 5. We are standing strong to support Elijah. Elijah has grown up in warp speed and he has character, knowledge and compassion. A very energetic boy that you would never know has had any issues. We don't talk, instill, grind his diagnoses because we want him to be whole and him to have a straight mind with no restrictions for his future. We don't need sympathy or "feel sorry" for us. This is life and we live it to the best we know and can.
Elijah's favorite things are super hero's, sharks, ocean creatures, dinosaurs, baking and cooking, art, water and sand activities, his tablet, making friends and loving people. His personality is contagious and there is no stopping him. Yes, he has flaws but don't we all? He is one special kid and we wouldn't want him any other way. He makes you laugh, cry, smile, calm and definitely loved. We would never compare him to any other child as he is unique and so special in his own ways. He is Elijah.
Our journey is not over. It has just began. We have many many years to conquer and make sure we try and do everything we can to help him succeed. We're so excited for more adventures and opportunities. We are so blessed to have him and I would not want life any other way.
