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Wednesday, November 23, 2011

What are your thoughts ...

I recently talked with a friend who was having a tough "diabetes" day.  We have all been there and we will all be there again.  There are some days when it just hits you, just like the day your child was diagnosed.  At these moments, there is no holding back the tears.  Personally, I let the tears flow.  I cry, I whine, I fuss, I move on.  Today is such a day.

Yesterday, I took the kids with me to a JDRF Promise to Remember Me meeting.  Priscilla and Trevor will not speak in public so, they nominated Lydia to talk for all of them.  The meeting started late so Lydia cut her speech short but I had already read it the night before.  I was proud of her but at the same time, my heart was breaking. Such pure yet raw emotions flowed from her as her eyes welled up with tears.  Lydia has had diabetes for almost 7 years.  This year has been the most trying and difficult for her.  Let me share a bit ...

As most of you know, we almost lost Lydia this summer.  During summer vacation, she just got tired of diabetes.  Tired of having to stop what she is doing to test, tired of counting carbs and taking shots, tired of people commenting about her disease, tired of feeling different.  Because of this, she decided to take a vacation from diabetes.  This resulted in one of the most severe cases of DKA the children's hospital had ever seen.  Withing the first 24 hours we were told numerous times that we needed to be prepared, children didn't recover from DKA like this.  Of course, this wasn't acceptable to us.  I would not/could not lose my Lydibug.  We contacted everyone we could and begged for prayer.  I held Lydia's hand and cried and begged her to please not leave me.  This was the most horrible experience I have ever gone through.  Thankfully, God has big plans for Lydia and she made a full recovery, healthwise.

Lydia still hates having Diabetes.  Yes, we are in therapy and she is taking some meds to try and help her learn coping skills. But, the raw and painful emotions are there.  Spoken in words every day, so clear in her beautiful blue eyes, evident in the sadness that seems to surround her.  These emotions were put down on paper (ok, not paper but typed on her Ipad) to be spoken to our congressman.  Lydia mentioned that she hates having diabetes, she hates missing school, missing soccer, going to therapy.  She hates being different.  This hurts to hear.  I have always told the kids they can do anything they want, they just need to plan more for it.  I never wanted them to feel different.  Lydia's response to this is:  "Mom, I love you and I am glad you think that but it just isn't true.  There are things I can't do because I have diabetes. Everything has to be planned and even then it doesn't always work out.  No matter what you think, Mom ... I am different."  At this moment all I could do is hold her close and share some tears with her.

I have been told that I shouldn't allow my children to see my emotions over their diabetes.  I tend to disagree. My kids appreciate the fact that there are days when I am overwhelmed, tired, angry, sad.  They have these emotions and feel they are supported and their feelings validated because I too, share these with them.  What are your thoughts?  Do you hide your emotions from your children?  How do you deal with the times diabetes overwhelms your child.  I am not looking to cause division or fussing, I am just looking for some honest support and suggestions.

Tuesday, November 15, 2011

Too much reality ...

Ever have one of those days?  A day where your reality just seems to be too much reality?  Sometimes I find myself here.  I try my best to be positive, to put on a happy face and push forward but some days it seems almost impossible.  Please pardon my ranting but, I need to let it out.

I have four children, three who have type 1 diabetes.  I do my best to stay positive even when it seems impossible but, sometimes the "happy" just isn't there.  I feel like I have no control over this disease at all.  No matter how many alarms I set, how careful I am to count carbs and bolus there just is no rhyme or reason.  So many others post and blog but I find it leaving me even more frustrated.  Am I the only one who finds out their child lied about a blood test?  Lied about taking a shot or bolusing?  Forgot that they need a blood test or insulin?  Are we the only ones struggling with higher A1C's?  Why do I feel like I am drowning in a see of diabetes?  How can I manage this better and have better results?  I have found local support group meetings unbearable.  Sometimes I can't bring myself to look at facebook.  Am I the only one struggling?

I am sure I am not.  Why can't we, as parents, be honest about this subject?  I know I need support right now but, I haven't been able to find it.  So, if you are suffering from too much reality, please message me, email me, talk to me.  Maybe we can walk this rough patch together.

Monday, November 14, 2011

World Diabetes Day 2011

Yes, today is World Diabetes Day.  To many, today is a day to wear blue and show support for friends and loved ones who have diabetes.  It is a day to learn a little more and tell someone else about diabetes.  For us, the day is very much like every day with one exception ... we see the support and attention this disease demands.  Today, we will still test our children's blood sugar 8 - 10 times, we we still count every carb and bolus or give shots accordingly.  We will still worry every second our child isn't with us.  We will still deal with the ups and downs of blood sugars and moods.  Today, some of us will still mourn the loss of someone close, someone whose life was claimed by diabetes.  For me, that someone was my baby sister, Marah Faith Jordan White.  Why do I use Facebook for Diabetes Advocacy?  Because I do not want to know the pain my parents feel every day.  I don't want a blue candle lit for one of my sugar babies.  I don't want to ever see another blue candle.  That is why we fight.  We fight to inform and educate, we fight to find a cure.  I fight in Marah's memory and I fight for Lydia, Priscilla and Trevor.  I fight for all the wonderful people I have me either personally or through the DOC.  Today I ask my friends and family to wear blue.  I ask you to take the time to learn about diabetes or to help educate someone else about it.  And tomorrow ... well, tomorrow I will do the same things I always do.  Won't you join me?  Diabetes doesn't take a break in our home, why should we take a break from fighting back?

Take a minute and check out a great blog from a fellow "D" Mom ...