Monday Musings Worry
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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26 thoughts on “Monday Musings Worry”
I am very happy to hear this 🙂
It was a relief to hear that the results were normal. I broke down and cried after, now on to the next test to find out what’s really going on. Thank you for the happiness. ?
You deserve it and I shall continue to follow the little chaps development.
Good luck to you both!
Thank you so much he’s our little champ fighting the odds against him daily. ?
Thank you for cheering him on with us. ?
It’s really appreciated. ?
As parents, we all worry about our children so my thoughts are always with you. Glad to see that there may be some light at the end of the tunnel for you.
It’s been a long dark tunnel for so long I’m happy to see some light! I just feel like I was born worrying and really it’s like breathing to me. I wrote a blog post just about worrying! I know it mixes in with my anxiety and takes on a life of his own. So I have to remind myself he’s on the right track with his surgery date. God won’t give me to much to handle, and I did give birth to a super hero. ❤️
You did indeed
Thank you. ?
With a special needs child, any good news must be wonderful, whatever more challenges are ahead.
It really is a reason to celebrate whatever victory there is. A song, successful potty training, or staying dressed all day. I could write a blog post about all of those! ?
That long wait must have been agonising for you – I’m so happy it ended in good news. You are right to celebrate the little successes. Sound like you’re doing an amazing job.
Thank you sometimes I feel like I’m not to amazing when I get stressed. But not knowing anything and suspecting the worst makes me anxiety ridden. Now to find out more answers with each new challenge. I really appreciate your kindness Tamuria. ?
YAY….what great news….amazing little creatures our children…..kudos mom…you hung in there and got through it all yet again….your amazing yourself…..kat
Awe thank you so much Kat! I thought I was going to cuckoo but I phoned twice and heard from them once. I never go over 3 calls to the same person it’s always been my rule. To hear good news sure broke open the flood gates of my grateful tears. ❤️
How wonderful good omen for the new year….XXkat
This is what I’m praying for as well. I’m grateful for this prayer being answered. ❤️
Thank you for being wonderful you! ?
I don’t think I ever worried until I became a mother…now your post echoes my daily thoughts! So glad for you to have good news <3
It was a long time coming and I was so relieved because of some new unexplainable behaviours. More tests will be needed so my worry never ends. I always remember that quote to be a Mother one must wear their heart outside of their body. ❤️