Gotta love that smile!  If your child has hydranencephaly this group, The Global Hydranecephaly Foundation, is full of hope, support, and understanding.   http://www.hydranencephalyfoundation.org/

Tis' the Season

Thanksgiving is over!  It’s officially Christmas time.  It is not the stores, radio, or television programming that sets the time for me.  It is a family tradition carried from childhood.  The day after Thanksgiving may be black Friday for others but for me it is the first day of playing Christmas music.  I love it!  I also love sappy Christmas movies.  One or the other will be playing in the background for the next month. 

Other things about Christmas are not so easy or so fun.  It marks the turning of weather which always meant Maddie’s ability to go outside changed, too.  With her body temperature issues trips outside were limited.  It also meant needing to get Christmas presents.  The two are tied together for me.  I always wanted to find things to help Maddie enjoy the long few months ahead.  So her gifts always included warm clothes and a pile of books.  That wasn’t enough for me.  I wanted to get her something that she would really love; something that did something amazing.

One year I found a sled with a curved back brace support in an L.L. Bean catalogue.  I showed it to one of the nurses who agreed it was a great idea.  So I paid a whopping amount and purchases a bunch of hand warmers to help keep her warm.  I was so excited!  Maddie not so much.  But then she had never ridden a sled and I had spent have my childhood flying down the hill in front of the courthouse in our small town.  I just knew once she did it she would love it.

So a few days after Christmas, on a sort of warm day I got Maddie ready.  Out we went with the dog jumping around us.  I set Maddie on the blanket lined sled.  She looked at me like I had just set her in cold bath water.  I started pulling her on her sled across the yard.  I didn’t even get to the drive way before she started screaming.  About the only time Maddie would cry at that age was when her g or j-tube got pulled out.  And this was not crying, this was screaming!  The dog looked at me like I torturing the poor child and starts barking at me.  It was clear our little sledding adventure was done.  So much for the expensive gift that was supposed to bring my child joy.

Over the years I learned a few things.  Even if I enjoyed something as a child, it did not mean Maddie would.  Maddie didn’t like the sled or dolls or Silly Putty.  She liked switch toys, music I didn’t know, and fingernail polish.  I think the gift that she loved the most was the year a friend and I turned her ceiling into a fairy garden.  But the things she loved the most about Christmas were the music and the sappy movies.

Now that I have confessed what a poor judge of presents for my own child I was, I offer an article about buying gifts for children with significant specials needs.  It might be helpful to you or to others wanting to get fun gifts. 

"Please, No Stuffed Animals: Buying Gifts for Children with Significant Special Needs" http://creativespirit63.hubpages.com/_21w151xherrsj/hub/Please-No-Stuffed-Animals-Buying-Gifts-for-Children-with-Significant-Special-Needs#comment-11113752

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

Breaking through the Barriers

One of my friends posted this on facebook this morning.  It is awesome!  Way to go Susan Austin!!!

 

Artist Sue Austin has been in an wheelchair since 1996. With the support of scuba-diving experts, Austin has created a wheelchair fit with a propeller and fins that enable her to steer the wheelchair underwater. This wheelchair is part of her ongoing project called ‘Freewheeling’, which focuses on the intersection of art and disability.  To see more go to:  http://www.susanaustin.co.uk/

      Greetings from California!  I jumped at the chance to work in California for a week.  It hasn't been exactly what I expected.  The nasty three digit temperatures are here, too.  But on the bright side, my rental car has air-conditioning which my Jeep does not.  So I should not complain too much about that.  Then there was the evening I came back to my hotel to find it surrounded by a SWAT team because a shooter was holed up in a room.  Long story!

       The upshot is I'm hot and tired and need some inspiritation! And this dad has just the story to do the trick!
http://www.mlive.com/sports/grand-rapids/index.ssf/2011/05/byron_center_man_draws_inspira.html
I was denied permission to post the photo that accompanied the article.  Bummer! 

Helpful Link to Capable Kids Clubhouse

While on a search for coloring sheets which include differently abled children I discovered Capable Kids Clubhouse.  The site is produced by Easy Stand which happens to be the company which created on of Maddie's favorite things--her stander.  I think she would spend all day in hers if she was allowed to. 
      However, the site is much more than a sale spot.  It has awesome coloring sheets which include a diversity of children (YEAH!), a variety of articles of interest to caregivers of medically fragile children, games and songs for kids.  It is worth taking a few minutes to check it out at http://blog.easystand.com/capable-kids/.

"Don't Forget..."

Being a parent is not an easy job! Parenting is demanding physically, emotionally, socially, and financially.  It is a huge responsibility…all the time!  When parenting a medically fragile child things get way more complicated.  Add more worry, guilt, and responsibilities and huge consequences for errors to the load.  Add doctors, social workers, nurses, and my favorite schedulers who all think their priorities should be my priority.  Ahhhh!

In the face of great stress other people can be so helpful!  “Don’t forget to take care of yourself!”  Such words are often uttered when my child is critically ill in the hospital, I am facing a writing deadline that will determine whether I can pay the rent for the next three months, and I have a college student who is complaining about a paper that is not yet graded.  “Don’t forget to take care of yourself!” There have been many times when I have wanted to yell in return, “Just how am I supposed to do that?” 

I confess I started a list of things that would calm me down especially for stress in confinement, like an emergency room.  A cold drink, crunchy food, a trash novel, a Sudoku puzzle, and my child…okay so they were actually the tools I needed to sit still for the long hours of worry and waiting.  I had another list for actual hospital stays (I never leave Maddie for long).  Here are some of the things I have found helpful.

v  I have to remind myself to eat and sleep regularly.  If I don’t, I am easily overwhelmed and cranky.  The “to do list” in my head just has to wait for me to do those two things or even the simplest of tasks takes more time and energy than I can give.

v  I need to maintain relationships with friends who have a calming and strengthening affect on me.  When I am stressed, I avoid people who like drama or have a need to “fix” me.

v  I have adopted serenity spaces to take a short break.  For me the most effective spaces involve trees and outdoors (even when the snow is blowing).  I had to establish firm boundaries with the other people in my world about giving me time alone in those spaces.

v  I remember my grandparents raised children with far less money, space, options, and without a dishwasher!  They bring me strength and courage and gratitude for living in this time with my child instead of decades past.  

v  If I am looking at a long hospital stay, I do what I would at home.  I once created four huge backdrops for a children’s event host by a couple of museums, sitting right next to Maddie.  I have sewn clothes and props by hauling my sewing machine to Maddie’s hospital room.  I have written countless English lessons and graded a multitude of papers.  The work and the routine are important for my mental health as well as our financial well-being.

v  And every day, no matter what is going on, I get to take at least 15 minutes to do just what I want to do.  It might be dancing to a song that makes me happy, reading a junk novel, painting something silly, or taking a very hot bath and fantasying I’m on a cruise ship heading for Alaska.

As frustrating as it is to hear, “Don’t forget to take care of yourself,” it is important to figure out how to do that.  I am so aware that taking care of myself looks different than taking care of anyone else!  Once I knew what worked for me, handling whatever comes my way much easier.