‘To the mama who is doing EVERYTHING, but feels like it’s never enough.’: Special needs mom pens open letter to parents with ‘difficult journey’

“To the mama who is on a parenting journey that is much more difficult than most, this is for you.

To the mama who crawls into bed at night aching from head to toe from the constant lifting, carrying, and re-positioning of her child who is unable to move themselves and the lugging around of equipment that you have been doing all day, this is for you.

To the mama who sheds a tear behind her sunglasses at the park when she sees other kids running and jumping around, knowing hers may never get to do this, this is for you.

To the mama who is not only a parent, but a physical and occupational therapist, speech therapist, honorary nurse, and professional crisis manager, this is for you.

To the mama who feels so isolated because she doesn’t have time to go out with friends anymore, this is for you.

To the mama who can’t leave the house without oxygen, feeding pumps, barf bags, medicines, and pulse/ox machines, this is for you.

To the mama who feels like she is drowning in a sea of doctor’s appointments, therapies, and blood draws week after week, this is for you.

To the mama who stays up late nights even though she is exhausted doing research and finding the best doctors and treatments for her medically fragile child, this is for you.

To the mama who gets woken up 5 times a night to the sound of different machines in her child’s room alarming, this is for you.

To the mama who is doing EVERYTHING, but also feels like she is never doing enough for her children, this is for you.

To the mama who feels like she spends more nights on a pullout bed at a children’s hospital than she does in her own room, this is for you.

To the mama who is uncertain about the future of her children’s health, this is for you.

To the mama who is so utterly emotionally and physically exhausted but gets up each and every day ready to take on the world all over again, this is for you.

To the mama who continues to have hope, this is for you.

To the mama who will NEVER give up on her children, this is for you.

I know this is not the parenting journey you had imagined yourself on when you chose to start a family but it is the one you were born to do.”

This story was submitted to Love What Matters  by Jillian Arnold of Cincinnati, OH, mother of two young children battling a rare genetic disorder called ASMD. You can follow her journey on  Instagram, Facebook, and her website. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories like this:

‘One day, you’ll find that to-do list is trivial in comparison. You’ll wish you could go back and rock your baby a bit longer.’: Mom of boys with incurable disease shares letter to younger self

‘You don’t fit in. Old friends move on without you. They go to theme parks. You go to hospital rooms.’: Special needs mom pens ode to ‘the parents who feel like they don’t belong’

‘I know you feel invisible. I see you running your child to therapy when friends take their kids to Little League. I see you cringe when people whine about petty things that pale in comparison to your day.’: Mom pens touching letter to special needs parents

‘To the dad at the bounce park, thank you for teaching your child to interact with someone ‘different.’: Mom to son with Down syndrome shares stranger’s act of kindness, inclusion that made her ‘heart swell’

Do you know someone who could benefit from reading this? SHARE this story on Facebook with family and friends.