Wednesday, October 26, 2011

The Little Red Wagon That Could..... And Will

Lately I have been suffering from what can only be described as the opposite of writers block.  I guess we could call it writers overload....?  Every time I sat down to write I couldn't decide which topic to tackle!  So now I have made a list of fun things to discuss and dissect, all of which will have to wait for a later date.

This morning I read an email from a friend telling me that a friend of hers was currently "living" at our local children's hospital with her 3 year old, who was recently diagnosed with type 1 diabetes.  My friend asked that I reach out to this family in hopes that I could tell them a little bit about what it's like "in the real world", after the hospital stay.

Unfortunately, I have received quite a few emails like this from all over the country.  I have sent many emails to parents of little ones now forced to live such a big life.  I know there are many more out there struggling to find their normalcy amidst the shock of such a big lifestyle change; so I want to address them today, and especially the parents of the 3 year old in our 'Little Town'.

First of all, I want to tell you to breathe.  This is your life now, so lets go ahead and start dealing with that.  On this issue I allow myself a few 10 minute meltdowns a month.  Whether it is tears, frustration, silence; I think I need to have those little pity parties every now and then.  After the 10 minutes of "woe is me", "I hate diabetes", "blah blah blah".... move on!  Get over the fact that you are:
The simple fact is: you are dealing with this now and it is making your hourly life a challenge, BUT your child will be living with this forever, or until a cure is found.  You are the lifesaver your baby/toddler/kid needs, so it's time to step up.

I also want to tell you to find support.  Church, family, friends, neighbors, etc.... let them listen, learn, and help you and your family as you find your new normal.  If someone says they want to help, LET THEM!  Educate your babysitters, family members, school teachers and anyone that will be joining the life saving team.  You will need to take a break, so you will need someone to be capable of taking over for a few hours.  In that same vein: take turns between you and your spouse with the night time blood sugar checks.  (and if you are tackling this solo.... again: let someone help you.... you need a break)  We check Bug's blood sugar every night at 2 and I don't realize how much that effects me until I have a night off and get to do something as simple as stay in bed all night!

One important thing to remember when it comes to all the support you are building: you can not expect anyone to understand EXACTLY what you are going through.  Your friends and family will love you, help you, go out of their way to make your child feel comfortable and "normal".... all of that is beyond wonderful, and has brought me to tears many times.  However, unless they are you or me or another parent raising a child with type 1, you will never be able to look at them in the face, with tears in your eyes, and say "I really hate this" and have them say "I know" right back to you..... all without actually uttering a word!  This diagnosis changes everything.  It will put a hitch in almost ever gear of your life and you will adjust.  You WILL adjust.  You have to adjust.

Lastly, I want to assure you that the average person doesn't know what type 1 diabetes is and you will be asked questions similar to the few that have come my way:

"did you feed her too much sugar at too early of an age?"
"when will she grow out of it?"
"is there a vaccine for that now?"
"did you not nurse your baby long enough?"
"was she born with it?"
"have you looked into a natural cure?"

These sound crazy to you now, because you have been buried in diabetes education books and articles.... but I have to admit, I asked my brother-in-law (an adult with type 1) why he was wearing a pager with his bathing suit, when I first met him.  It was his pump.  Makes me nauseous now, just thinking about those words coming out of my mouth!  So, try not to be angry when people say "stupid" things.... it is just an opportunity to bring about an awareness of this awful condition and a need for a cure!

Take it hour by hour.  Sleep when you can.  Take breaks.  Vent to a listening ear.  Live the life you planned to live; diabetes will travel, go to school, take ballet, eat sugar, go to camp, and beyond.  Give your kid a hug and be so thankful you are able to.... too many kids aren't able to leave the children's hospital with mom and dad in the little red wagon; still something I have to remind myself often.  And mostly, remember that even though you feel it.... you are not alone.  Sadly, there are bunches of us out there living this life and praying, in earnest, for a cure.

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