Stories

In Between

By December 18, 2021 No Comments

In our post-Paul life, we have taken on the challenge of trying to help other parents who struggle with sick kids.  It has been a gift for us to be able to help others who are facing some similar issues to what Paul dealt with.  Today would have been Paul’s 20th Birthday and we are glad to have opportunities to keep his memory alive by helping others.  Recently, a mom of a 4-month-old was expressing her frustration in dealing with medical issues for her daughter – “It feels like we are stuck ‘in between’”.  It describes perfectly what it felt like for us, too.

We were in between a normal healthy kid with a few challenges and a sick kid who could not participate in most things.   Each day we didn’t know what surprise was in store for Paul and for us.  Sometimes we had reason to hope that Paul was going to have a fairly normal life and that we had health issues under control.   Those days we made plans for the future and advocated for Paul’s participation in everything and anything.  Some days we felt like the medical issues would never end, he was never going to have a shot at “normal” and we would be in the hospital every month forever and ever.   Thinking too far ahead was almost always a bad idea.  We got comfortable “in between” because we had to.

Paul had about 40 surgeries in his 15 years.  So, there were plenty of bad days and tough decisions.  But he also went for stretches of months (or once a whole year) with almost no issues at all.  “In between” meant we could never really relax, and we were always on the lookout for emerging issues – either short-term or long-term stuff that could knock us out of “normal”.  This is the hard part that parents of disabled kids face – never really being able to relax and stop worrying.  Every parent has that to some extent with every kid, and we also had some of that with Page along the way.  But with a disabled kid, it is more extreme – “normal” sports/classroom or left out.  Is it a symptom of the larger issue, or just a flu?  At least twice we felt like our team of doctors was asking us to decide things that were life and death.  “In between” is also “on the edge”.  Guilt for potentially making a wrong medical decision, arguing to determine the best solution (either medical or how much to advocate in a school or community), and just plain crappy outcomes – these things all threatened to swamp our family, our marriage, and our future.

Many marriages don’t survive a disabled kid.  Ours did, and I think we got better at arguing and communicating with each other because of Paul.  But it wasn’t easy being ‘in between” and we understand when we see marriages fall apart in our disabled community.  Sometimes I wonder, when we are talking to new parents or someone that we just met who is facing challenges, if we remind them of the worst possible outcome.  That their child may not survive.  It makes us pause sometimes and hesitate to help.  We don’t know how far along they are on their journey in between denial and acceptance.   We resolved to do everything we can to make each kid’s life easier and their daily as fulfilled and joyful as possible, so we get pushy sometimes.

We know several families going through a lot this holiday season.  Right now, our thoughts are with a completely unfair cancer diagnosis in a little girl and another family struggling with a new SB baby with a tough diagnosis.  If you are struggling, I want to tell you that “In between” is not the worst place to be and you can find joy and peace amidst the stress, anger and angst.  Kathie, Page and I learned to enjoy the good days like we never did before, and to see hope while hanging on during the bad days.  It bonded us beyond anything “normal”.  We are world champions at hanging on for another day, no matter what the setback.  There is always a way forward and always better days ahead and the willing, helping hands of those around us reminds us how great most people really are.   If you find yourself “in between” I encourage you to hang on. Accept what you can’t control.  Accept the help of those around you, it builds your community.  And celebrate like hell anytime you can.  You need it as much as your sick kiddo does.