Our Ray of SonShine, Our Baby H
When my little miracle baby was 6 months old, he began showing some strange movements, and without going into the triggering details, my precious boy was diagnosed with Infantile Spasms.
‘Rare’ condition, they said.
‘Development Delays’
‘Autism’
‘Front line meds, steriods, seizures’
All the words, I have never been able to say out loud due to living with an unexplainable level of trauma, fear and heartbreak
Until now.
I used to struggle to come on the support group for a long time, it was too overwhelming and I couldn’t bring myself to read anything although my husband would share all the success stories with me. 3 years later, I volunteered to share our story to all of you incredible parents, carers and families… And remind each one of us including myself, each and every one of our children is a Warrior.
My little love, a surprise for me and his Dad, a gift from God – given to us during the unsettling times of Covid. Our 2020 baby, gave us a reason to believe there was light at the end of all the lockdown tunnels, and there most definitely was.
Diagnosed at 6 months, he then had a beautiful period before turning 1 in which he had absolutely no nasties (We don’t say the ‘S’ word) Unfortunately, the nature of the little buggers, they came back. It was my worst nightmare and it shattered us as we had lived in such hope and held on to the faith of us not having any answers as to why Baby H had this condition.
As time went on, we realised baby H’s epilepsy was more stubborn than we could have ever imagined. Heartbreaking to say the least, living through the bitter sweetness of watching our beautiful little boy grow up, happy, smiling and playful vs the constant fear of ‘When will they ever stop’ and ‘How will our precious baby develop’.
3.5 years on, I can definitely say this has been THE hardest journey we have ever walked as his parents. BUT! This boy is made of gold, he is the most happiest and fun little boy and we are so so blessed to have this little bonkers explosion of fun as our son. He sings and yaps on all day, especially at 7am ???? He is a little foodie and enjoys the food a grown man would eat, he loves to swing and slide and mostly happy when swimming! He is so kind, so affectionate and always so happy to see everyone he loves.
We are still fighting his nasties, trying the bullet points of medication to find the cocktail which suits him best, we fight with our strongest arms against his developmental delays with a clear understanding of just how much his tiny little brain and body has been through in such a short space of time and we stand in his corner no matter what, because he is perfect and we will do everything in our power to make him feel like he is amazing. Her is slowly getting better at his walking, and communicating beautifully and trying ever so hard to string sentences together to tell us all the wonderful things going on in his precious little brain.
Thank you to everyone who has ever posted on the support group, had the courage to share your sensitive stories and given strength to mums like me… who amidst all this external bravery, just want to sit in a corner and cry my eyes out because why me? Why us? Why my baby? I guess we will never know… But one thing is for sure, We were gifted these warriors for a reason, and they are making sure we too are their warrior parents.
Just a Mum, stumbling through the madness, living through the hope, enjoying each day with my Prince… One day at a time x
Aliyah
