By Rachel Hoeing and Monica McGuire
I honestly believe that some people are put on this earth to inspire and help others. After hearing Monica’s story and the optimism she exudes, I believe she is one of these people. Monica McGuire lives in High Point with her husband of 5 years, James, and her adorable 3 year-old son, Connor. James is an occupational therapist and Monica formerly worked as a registered nurse, but is now enjoying her role as a stay-at-home Mom where she gets paid in hugs, kisses, and smiles. We are happy to have her as a guest blogger today to share her story. Monica has encouraged any parent who may be facing a situation similar to hers, to reach out to her. A link to her blog is at the end of this post, and we encourage you to take a peek and follow along their journey. … Rachel
Three years ago we were like any other parents, experiencing our baby’s first holidays. Never would we have imagined that two days after our 8 month-old baby’s, first Christmas that our world would come crashing down. Life as we knew it would never be the same.
I was changing Connor’s diaper after his evening nap, and saw him doing some odd behaviors. They almost looked like a startle reflex. I had worked for several years as a pediatric nurse, and I knew this wasn’t “normal” because his eyes had shifted to the right, and he didn’t look just right. My nurse brain knew what my mommy heart didn’t want to believe. He was having a seizure. I immediately called my husband into the room to look at him, and he said that he had seen him do that the night before, but didn’t think it was anything. The next day we would find out that it was something all right. He was diagnosed with a catastrophic form of epilepsy called Infantile Spasms (I.S.).
We spent the next 4 days in the hospital with doctors performing test after test. Connor was continuing to have seizures every single day. Every time that I looked at him I would break down into tears. How did this happen? How did my typically developing little boy go from meeting all of his milestones on time, to us being told that he may likely never walk or talk? It was just so unfair. We were so unprepared for it all.
We were sent home with Connor being prescribed daily injections of a medication that was supposed to possibly stop the seizures. I had to quit my job because that same medication also suppressed his immune system. We were on isolation for 4 1/2 months. It was honestly the most depressing time in my life. Not only was my precious boy just diagnosed with a devastating seizure disorder, but I felt so alone. Like no one could possibly understand what we were going through. Many of our friends that had typically developing kids had no idea what it was like, and although they were sympathetic, at the end of the day they got to live their life with their children who could run and talk.
I cried daily, and I was near impossible to be around. After all of that time, and having to pin Connor down daily and inject him in the thighs with this medicine, it didn’t do one thing to help his seizures. It was only the beginning of our experience of medications that didn’t work.
Six months after Connor’s diagnosis, I read on a website about I.S. that these kids automatically qualified for Early Intervention which provides and coordinates therapy for children birth to three years old with delays in their development. Why had no one told me about this? It’s not like we had not seen a ton of doctors in this length of time. Connor was 14 months-old and still not walking or talking. So I took the initiative and called Early Intervention myself. Connor was evaluated, and we were told that he would qualify for occupational, speech, and educational therapies.
He eventually began to walk independently at 19 months of age. We decided that Connor needed more therapy, and definitely more socialization. It was so hard for me to take him places to do typical toddler activities because he just wasn’t developmentally at the same level as his peers. So, we enrolled Connor in the Infant Toddler program at Gateway Education Center. There he could receive all of his therapies, and interact with other children of varying abilities. The staff truly loves these children and their families. It was a blessing for me having been home with him for over a year and a half, because I was a little protective of him. Scratch that – a lot protective of him! He is now in the preschool program at Gateway. He truly seems to enjoy going to school every day.
We are knocking on the door of our three year anniversary of Connor’s diagnosis. While he continues to have nearly 100 seizures daily, despite having tried 9 medications, he is a really happy boy. He is still nonverbal, although I tell people he is the noisiest nonverbal child there is. We are currently awaiting our appointment in December with an I.S. specialist in Detroit. We are hoping that this doctor will be able to give us the answers that 5 other neurologists have been unable to.
To follow our journey of raising a child with special needs, visit our blog “The Life of Connor”:www.connormcguire.blogspot.com. I also can’t begin to express how valuable we have found the Family Support Network, and their understanding of families of kids with special needs.