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

Thank you all for your help along our journey so far! 💕

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