OTHERS

The Life of A Caregiver

Rare Disease & Syndrome

Kathy Tellstrom

Caregivers

Care giving is a full time job. It is hard work... emotionally, physically, and mentally. 

There are no words that can fully describe what it is like to watch your children... with exhausted bodies, tired eyes, sick bellies, pain that ranks off the charts... while they simply try to get through another day... often times from bed. Doctor appointments that never end, holding hands through needle pokes and procedures, drying tears during surgeries... both children and my own... endless pill bottles and trips to the pharmacy, trip after trip to clinics and hospitals hours from home, staying at Ronald McDonald Houses so often they know intimate details of our life, being with doctors and nurses so often it has become our child's "norm", awaiting much needed medical supplies to arrive in the mail, counceling appointments, home nurse visits, contacting doctors offices and schools with updates and plans and concerns... overwhelming, never ending doctor bills...The list is endless.....

The life of a caregiver is giving

Over the years I have found one of the most gut twisting, heart breaking moments... is watching the kids peers living life without them. Watching their lives and relationships grow... knowing our child was tucked in bed, at home, missing out on life without them. I have spent numerous moments in my car crying, screaming... after watching one more soccer game, one more birthday party, one more play, one more school dance... without them. 

The life of a caregiver is very much different than what I had ever expected... We all dream of amazing things for our children... I didn't know this would be part of our personal journey together as a family. Despite feeling overwhelmed and tearful... we choose to celebrate all the milestones that are put in front of us. We celebrate having one more day... The little things become HUGE. Yesterday, sitting in our 13 year old daughter's PT appointment, we came up with a wonderful way to combine the daily walking she does with her PT moves she isn't too thrilled about... and SHE DID IT! She did it with a smile on her face that lit up the room! She did it... knowing she could accomplish this! She did it and felt pride! I smiled on the outside and cried on the inside... because that is what we sometimes have to do. We take the moments of achievement... no mater how big or how small... and we roll them into a mountain of "YOU DID IT!"     

The life of a caregiver is 'giving' even when you are exhausted yourself... during the late nights and early mornings... cleaning up messes from sick bellies, holding hair back and washing faces, crawling in beside your child to protect them from whatever monsters are ravaging their bodies with illness and pain, reassuring them they will be ok... even when you can't believe it yourself. Standing  in the darkness, at their bedroom door... listening to them breathe, knowing they have finally found sleep when they have fought so hard with pain. Those moments are life changing for a parent and caregiver. Finding joy even when your heart is breaking. Fighting even when you want to lay down in the path and give up.

I discovered a lot about myself these past 32 years of parenting that I could have never imagined when I was 21 years old and holding our first born in my arms... I have discovered layer upon layers... of how strong I am after providing around the clock care to our chronically ill children. I want other parents to know.... I see you. You can do this! You've got this! You are not alone.

You can join Ellen's Journey with EDS at https://m.facebook.com/empoweringellen/ 

#TeamEllen #EDS #EhlersDanlosSyndrome #OneDayAtATime

EMPOWER OTHERS!

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