To hope…

When living with a chronic illness we hold onto hope. We know that the pain and frustrations won’t go away. We know that we can be re hospitalized at any time so we hope for other things

We hope

That hospital admissions will be less than the year prior
That the pain can be controlled majority of the time
That doctors can make strides on understanding our illness
That friends and family will stick by through the hospital admissions, the testing, the days where all hope seems to be lost
That our teammates will support us on days even when we couldn’t be a part of the team 100%
That if we stay at a friends, they will understand the excessive check in to ensure meds were given, temp was taken, etc
That friends will understand our big celebrations over the milestones
Our employers know that we try our best to juggle work and appointments
That our favorite techs stay at the current hospital because they make the X-rays and blood drawls so much easier
That saying no when your daughter asks to skip a flush and we know we can’t allow it doesn’t make her hate us
That she can be confident and realize that the cecostomy that was supposed to “fix” her is still needed even though it hasn’t been the fix that was promised
Hope that all the medical appointments, surgery and test make them stronger vs fearful
That even when we hit setbacks that we can see a piece of positive to help remind us there will be brighter days
We can help other kids through their hospital admission or surgery
That people know that this is a chronic lifelong illness and that some days it is a lot to wrap our head around
That we can smile more than we cry
That we can inspire others