Boy with disability runs most inspiring field-day race ever

Boy with disability runs most inspiring field-day race ever   This is what it is all about...giving our children the opportunity to reach for dreams!

OH! No! A Schedule!

I’m currently in South Dakota with my aunt and my best friend.  We gathered at my aunt’s house in Grant, Nebraska Saturday with the goal of spending a few days exploring Wyoming before joining other family next weekend in Billings, Montana.  Yesterday morning we stopped to see some family in Lewellen, Nebraska before moving on to the Wyoming adventure.

My image of this trip was that we would just go.  With no particular place we needed to be or anything we had to do, we could just find the things we wanted to see and experience.  What I did not understand when I suggested the trip or in the months looking forward to the trip was that my aunt had a need for a more defined schedule. She needed to know where we were going and what we were going to see. What was freedom for me, was confusing and anxiety producing for her.  She had a strong need to know what to expect.

A schedule gives us a certain security and sense of well being.  It is even more so for children.  For children much of the world is unexplored and unfamiliar.  So a schedule that is dependable provides a foundation that is known and comfortable.  Children then know to expect.  They can anticipate and prepare for the next event.  With that firm foundation they are better able to handle the other parts of the day that are unknown and unexpected.

A body needs the regular maintenance of food and sleep. Children as well as adults are more emotional and short temper if they get too tired or too hungry.  If neglected for much longer, the brain is more affected.  One’s thinking becomes clouded and reaction times slow significantly.   When a child’s body struggles to heal or hold on to his or her level of health, getting too tired or too hungry uses energy needed for other things.  Therefore, schedules are even more important for children living with medical issues.  

 It does not have to be complicated just consistent. The most important pieces are the times medications are given and bed time. Bedtime is relatively simple.  The body very naturally adopts a schedule.  If you take a nap one day, the next day at the same time your body wants to sleep again.  So maintaining that time helps the body.  It also gives the opportunity to create a family ritual that benefits everyone.  Spending a few minutes reading books, listening to calming music, or having a private conversation quickly becomes a favorite time for kids and parents.  I spent a few minutes every night with Maddie  reviewing the day, identifying favorite moments and fun experiences, remembering people who were struggling, identifying things that I was proud of her for and reviewing what she could expect in the morning (activities, nurses, and my work schedule).  It turned out to be a favorite time itself. 

Even more important than bedtime is a child’s medication schedule. In my experience giving medications at the same time every day is vital.  That can be difficult when a child is receiving medications multiple times a day. Morning and evening meds are not so difficult because they are worked into morning and evening routines.  Medications due in the middle or at odd times are a problem.  Several parents I know used the alarm on their watches or phones to help remember.  I wasn’t good at that.  I struggled with those medications. 

I found it much easier to keep a med schedule when the dosage times were changed from 3 and 4 times a day to twice.   One of Maddie’s neurologists looked at her medication schedule and reworked the schedule so that all her medications were given in the morning or at bedtime.  What a gift!  I quickly became very protective of the twice a day method.  Whenever a doctor attempted to add a med at another time, I was very firm in maintaining the twice a day schedule.  Surprisingly most of them appreciated what we were trying to do and found alternatives that worked on the twice a day schedule.

Ironically, the place that caused the most problems with keeping a schedule was the hospital.  It was very frustrating.  If Maddie wasn’t sick going into the hospital, she would have gotten there quickly because of the crazy ways of the hospital.  Medications given hours late and being woken up to get a breathing treatment or other procedures is hard on a child’s body.  In addition, hospitals often change the medications to generic which are not quite the same as the medication the child is used to.  If a child is on multiple medications, it is easy for there to be errors in the type, dosage, or timing.   All of that adds additional stress to a child’s body.

During the transition to hospital care it is important to provide accurate information about all medication, communicate information about a child’s schedule, and emphasize any personal needs.  Unfortunately every shift change begins a new stranger who is unfamiliar with your child’s needs.  Consequently, a parent is often an educator when it comes to helping nurses and other care staff learn your child’s ways. Most caregivers will be very concerned about giving your child the best possible care but never forget that not all caregivers are created equal.  If one makes you uncomfortable, there is likely a problem.  Be kind, understanding, and compassionate but firm in communicating your concerns.  If that doesn’t fix the problem find the floor supervisor.  This is your child and he or she is depending on you to make sure the care is the best, including maintaining a schedule. 

Moving Beyond Hatred of Mother's Day

Mother’s Day is next week and I am knee deep in getting gifts ready for Project Mother’s Day.  We will be delivering Mother’s Day Gifts to 50 mom’s of medically complicated and medically fragile children.  It is an awesome process but nerve racking.  Because we do not yet have a 501C3 we are totally dependent on grass roots giving.  Corporations do not generally help organizations that do not have one.  This year we did not capture any media attention so we are on our own.  A week out and we have some holes in our vision. 

I started Project for Mother’s Day for the same reason I started this blog.  I needed to for me.  Totally selfish!  For years, Mother’s Day left me alone with Maddie, changing diapers, doing medical treatments, and other mom chores.  There were no flowers, no candy, no cool cards (or even stupid cards), no fun presents.  Just another day.  Then my friends and my sister (love them all) would call to say happy Mother’s Day and tell me all about the fun things they had done with their children.  I always tried to be an adult about it and oooohhhh and ahhhh in all the right places.  And every year I ended up in tears feeling very sorry for myself.  I hate the whole thing!!!!

So last year I confessed to one of the amazing crones (among my friends, crones refers to wise, compassionate older women who have strength, courage, and spiritual depth) in my life.  With about as much patience with my pity party as I have, Mary turned the table on me, “So what are you going to do about it?” And I shared an idea I’d been playing with for a couple of years.

I figured if I hated Mother’s Day, there were probably other mom’s in similar situations that felt the same way.  It would be fun to surprise them with a Mother’s Day delivery.  So last year the Friends of MaddieG delivered gifts to 31 moms.  I learned a lot along the way. 

I found a whole lot of women hate Mother’s Day.  Some of them were moms to medically fragile children.  Others were women who longed to have a child and were not able to.  Still others had  traumatic childhood experiences leaving complex and painful feelings about their moms.   Others mother’s had transitioned from this life filling the whole day with grief.  That is a whole lot of pain on a day meant to be a celebration.

I also learned that moms (and dads) of medically fragile children need support and connection all year and not just one day a year.   Many parents feel overwhelmed, isolated, and frustrated.  There are needs for equipment and accommodations that are way beyond the household budget. I know those feelings so well because I have lived it year after year.  Mary’s voice echoes in my mind, “So what are you going to do about it?”

The Friends of MaddieG is seeking a 501C3 with visions of continuing things like Project Mother’s Day, addressing the problem of transportation that is wheelchair friendly, and other issues families face when a medically fragile child is involved.

We would be delighted to hear from you.  What are the issues you are facing?  What resources have you found?  What are the things that your family needs?  I expect will be learning a lot from all of you as we grow and develop.      

Site Recommendation:
As I was doing some research this morning, I stumble on this site, Nemours: Kids Health, which has some basic helpful medical information.  There is a section for parents that includes very well written descriptions of a number of medical conditions and other material (some I'm sure you've seen before) nicely presented in an easy to read format.

http://kidshealth.org/parent/kh_misc/nemours.html#cat135