Here Comes the Guilt!

I was talking to one of my friends yesterday about an ongoing struggle she is having with one of her adult children.  Layered over the top of all the facets of the problem was guilt.   And not just ordinary guilt we are talking “mom guilt” here.  The very worst kind of guilt!  It strikes at anytime, anywhere, and now I am afraid never goes away! 

It didn’t take very long after Maddie came to experience this new kind of guilt.  I wasn’t all that bad at the old kind of guilt but this new kind was different.  I think it came crashing down the first time I was trying to get baby Maddie out the door on my way to work.  I loaded my purse, briefcase, apnea monitor, and the diaper bag on one shoulder and leaned over to pick Maddie in her car seat off the floor (not one of the nifty ones with the easy handle but the old ones requiring two hands to carry).  My cell phone slide out of the side pocket of my purse and hit Maddie right in the middle of her forehead like a bull’s eye.  She looked startled and then started screaming!  And there it came!  Guilt hitting me just as hard and accurately as the phone hitting Maddie. 

I was a lousy mother.  I should never had been trusted with the care of any child let alone a child as fragile as Maddie.  What if she needed to see a doctor?  They were going to take her away from me.  Within seconds I was a guilty mess of panic.

It was the first in a long line of episodes of mom guilt. In the early years every time someone made a negative comment about Maddie I felt guilty.  One of the ongoing issues for Maddie was her weight.  She was in the lowest percentiles for height and off the little medical graph for weight.  Every team member seemed to need to point out her weight issue to me.  Since I have been overweight my entire life, it was like pushing a little red quilt button.  Never mind that I had trouble getting Maddie to eat enough to get all of her medications in and she never finished a bottle.  No professional ever believed my report of what Maddie ate and drank.  I was a fat mom who was making her child fat.    At one point her orthopedic specialist who was very carefully explaining to me just how fat her thighs were and I blurted out, “You realize I am not biologically responsible for the size of this child’s thighs!”  GUILT overload.  As it turned out Maddie had an underlying metabolic disorder which caused her to store fat even when she was malnourished.

Every time Maddie got a cold or threw up, I was certain that if I had just done something different Maddie would not be suffering.  I put her to bed too late, I let her spend too long in bed, I let her spend too much time with other kids or  I put her to bed before her hair was dry.  Unconsciously I think I believed that if I would just get it right, Maddie would never be sick.  Since she frequently gets sick I must not be doing this mom stuff right! 

That sort of thinking is enough to make the most sane mom crazy!  Our children have medical issues that leave them vulnerable to being sick.  Sometimes it is minor colds or flu and other times it is so complex it takes days for specialists to figure it out. 

It has taken a long time but here is what I have learned about mom guilt and medically fragile children.  We are not responsible for the twist of genes or fate that resulted in our child’s condition.  It is not fair!  It is not like other children.  It is not something our magic mom powers can fix.  As nice as it would be to be in control of our child’s health and well being, we do not have that much power. 

So we try to be very clear internally with what we have control over and what we do not.  I make sure that Maddie gets her food and medications at the right times, keep her clean, dry, and warm, make sure she has time to rest and sleep, and see that she moves as much as possible.  I call the doctors when I am unsure of something and I try to make educated medical decisions for her.  Most things beyond that are out of my range of control.  Even the professional can’t control or even anticipate what Maddie’s body is going to do next. 

The guilt is still there sometimes.  That somehow if I was just a good enough mom… I hold myself to a higher standard than I would anyone else and sometimes I fail.  I struggle to forgive myself for my limitations.  And just hope that as Maddie grows she will know that even when I was not the best mom that I always loved beyond reason. 

You might enjoy reading a humorous view of motherhood which you can find at http://www.squidoo.com/my-chance-at-mother-of-the-year

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.