Waiting for days on end for news that I’m praying will be positive instead of negative. I watch my son’s behaviour to indicate if he’s having seizures and I’m missing out on documenting them. My mind can go in a thousand different directions without hearing any results for a month. And trust me it has, is this how my life is supposed to be in constant worry for his health?
I never knew when I rubbed my belly at eight months protecting him from the news of my Mom’s death that I would be in this state of mind now. I never knew with him arriving at thirty-six weeks we would encounter all these medical issues. I wasn’t prepared for my one and only Mom’s death, nor ready to to give birth prematurely.
I went home from the hospital reeling with grief while my baby had to stay behind in the NICU (Neonatal Intensive care unit) I had a four year old son and a husband that needed me and I felt so torn. All I wanted was my Mom to hold me and tell me everything would be alright. But I didn’t have her then and I don’t have her now.
Being a special needs parent feels a lot like venturing out on a lonely road to find my happy, peaceful place in my mind and body. A lot of the time reading and researching helps so I know how to approach Dr’s and specialists with my questions. What is the reason that my son’s Global Developmentally Delayed, why does he struggle so much with basic concepts of visual spatial relations and verbal fluency with his conversational speech?
Why does he suffer with anxiety, OCD, and possibly ADHD behaviours? I’m told he was born early so he would be delayed to reach his developmental milestones. Which is half true he sat up and crawled later then his peers, but walked early and ran laps around me by the time he was fifteen months. Yet there are challenges, his speech was delayed, he had a high threshold to pain, but a weaker immune system and was sickly as a baby.
Life has turned into a system of checks and balances he’s been tested for genetic disorders, allergies, and I’ve completed many developmental questionnaires. To date he’s had a polysonogram and an EEG that will be followed by an MRI and surgery to help improve his severe Obstructive Sleep Apnea Disgnosis. He has a wonderful therapy team that is helping him succeed so I question myself what do I have to worry about?
I worry for his future will he hold down a job, graduate and go to college, meet someone special and fall in love? What will it be like when he does and he gets his heart broken? How will he cope with his anxiety, how will I? Will he still be living with us or in assisted living? I pray he will be continue to be his own success story as I cheer every accomplishment he makes. The latest is remembering words to the Christmas carols he practiced in preschool. As well as being able to sing Head, Shoulders, Knees, and Toes while performing the actions.
When we would sing that song before he’d get so confused and start yelling and putting his hands over his ears to block out all the excess information flooding his brain. I had to explain to his preschool teachers that the song irritated and I think even scared him. It broke my heart to see his reaction so after three months of therapy he can sing the song with a smile on his face. Then I think you don’t have anything to worry about he’ll be fine. I’ve heard this from well meaning people in my life and I always say he will be with the proper early intervention in his life.
The call I’ve been waiting for finally came in today after waiting for thirty long days! The results were great there’s no seizure activity but his brain will need to be assessed at his MRI. So I arm myself with Teflon encased around my heart, cover myself in prayer and I realize I’m not emotion or bullet proof but I have God and a wonderful support network on my team. I will help my son get through this with love, acceptance, and prayer. I’m a warrior, and I love homand I may get knocked down with worry but I will always get back up ready to fight.
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