Flexing in the Heat and Other Times

It is way too hot outside!  The heat is so frustrating!  At a level hanging around a 100 degrees and above for days on end is plain nasty.  Among many things I would like to do outside, I have a table and two dressers I’m anxious to be painting but they have to be sanded first.  Before I would have spent a whole lot of time being frustrated at the situation.   Now I just put outside work on hold and invest the time on other projects.  It really isn’t that big of a deal.  I just flex with the weather…and anything else that comes up.

 One of the gifts that comes from being the parent of a medically fragile child is flexibility.  All children reorder priorities, time, energy, and resources.  A medically fragile child tends to reorder things every day.  Sometimes it is frustrating, disappointing and lonely.  A single dad of a complicated little boy in Indiana said to me, “I love my son more than I thought was possible but it is like being on house arrest.”  He’s right. 

When you have a medically fragile child, the well being of the child comes first.  It means not going anywhere just because you take a notion to.  It means not going places when the weather is too hot or too cold.  It means staying home when the child does not feel well.  It means dropping whatever plans you have when another caregiver is not available or a nurse calls in sick.  It means rearranging work and vacation schedules to work in doctor’s appointments or a hospital stay.  All of that can leave parents feeling isolated and alone.

Which, of course, means that we have to be very intentional about some things.  I have found that I have to remember to call my friends just to keep in touch and to be the friend I have always been.  I may not be able to go out for lunch or catch an art show the way I used to but I can still talk, laugh, and share life with them.  I couldn’t get through most things without the love and support of my friends and family but in order to have them I have to be there even if it is just by phone.

Over the years I have learned to always have a plan B.  I think it was after I had to cancel date number two with a guy I was interested in that the disappointment nearly overwhelmed me.  After a major pity party with me as the only guest, I realized this was part of my life now.  I could either be miserable or I could learn to cope with the sudden plan changes that frequently occurred because of Maddie’s medical needs.  I learned the plan B method.  Always have something I can do and be happy doing ready at any moment.  It doesn’t have to be big.   Often it is a new book I am looking forward to reading, a DVD movie I haven’t seen, or a special project.  Usually just having that and loving to spend time with Maddie was enough to make up for whatever did not happen.

I, also keep a running list of things that I would like to do at home.  Not chores!  Fun things!  That is really how I ended up being an artist.  I wanted to make handmade paper so a friend taught me.  Soon I was making bunches of the stuff and moved on to finding ways to use it.  That was followed by searching the public library for art and craft books.  I continue the practice even today.  At the moment there have be at least ten projects I want to try.  Thankfully I am usually able to find a market for my work so it also is income producing.  But that is not how it started.  I started doing art because I was not able to go the places I normally would and do the things I enjoyed.  Art was my plan B.  Plan B days became like prized snow days, only I didn’t have to shovel us out!

Early on, I sought out support groups face to face and on line.  In the end, they were not as helpful to me as they might be to others.  For one thing, very few parents seemed to be dealing with a child with as complex issues as Maddie had.  At that time the disability of the day was Down’s Syndrome (much like autism is today).  The issues I was trying to deal with were so much more complicated and the future so much more uncertain. I tried a couple of face to face groups.  I soon discovered the childcare available for the groups did not include feeding tubes, seizures and other issues Maddie had.   In addition, the evening meeting times conflicted with Maddie’s evening treatments and bedtime.  There may be other options available that I am not aware of.   I think there are now different online supports that maybe available (I will be doing some research and will post them as I find them).  It would be worth taking the time to try to find some other parents raising medically fragile children. 

Having said that, I feel a need to give a word of warning.  These parents will be just as diverse as the general population.  Some will seem amazing in what they are doing and how they parent their child or children.  Learn from those. Others may be struggling to survive and have difficulties that seem overwhelming.  Coping skills of some include a lot of drama, rage, and various addictions.  Even though a desire to help maybe the first thought, it is important to maintain boundaries.  Parents of medically fragile children have more than enough issues to deal with without taking on the needs people in  unhealthy situations.    

Having a medically fragile child does not have to be a lonely frustrating experience!  It takes knowing yourself, maintaining friendships, and finding interests you can pursue with the resources you have.  It would be nice to find someone who is in a similar situation but that may not be as easy as it sounds.

If you have found ways to help you or your family, I and the other readers would love to read your comments.