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Friday, December 16, 2011

A big oops???

When Lydia was diagnosed with type 1 diabetes, I was told that I should be grateful and thankful that is was diabetes and not something worse.  I took that advice to heart and clung to it on my bad "I hate diabetes" days.  I even told my children this very thing and shared it with others as well.  Today, I wonder if I was wrong.  I don't feel happy and grateful that the kids "only" have diabetes.  I know my kids are thankful and grateful either.

Lydia has been struggling with her diabetes for quite a while now.  We see a therapist several times a month.  Today as I sat in the room and talked with the therapist it just kinda hit me.  Sure, there are worse things but, isn't this bad enough?  I have watched this sweet child of mine struggle so much lately.  She hates life because of her diabetes.  So much so, that we almost lost her in August.  I have watched this happy, outgoing girl become someone who hates to go to school, doesn't want to deal with people who don't understand, is so unhappy it breaks my heart.  No, I don't think I need to be thankful or grateful that my children "only" have diabetes.  I am sorry for the times I have passed this advice on.

Thanks for letting me rant ... a broken hearted Momma.

Thursday, December 15, 2011

Reflections ...

As I sit here in my recliner making "blue"tiful ornaments for our family ornament exchange, I have had lots of time to think.  I have spent the time reflecting on the reason I am making these ornaments.  Beautiful, blue circles, all sparkly and ready  for our family to hang on their Christmas trees.  Why blue circles you ask?  Because that is the symbol for diabetes.  No, I don't like, want, or try to make everything about diabetes but, honestly, it is hard to get away from.  I spend my life trying to keep three sets of blood sugars, shots, pumps, and carbs straight in my mind.  I have alarms that go off every three hours, all day, every day.  Therefore, I advocate.  I wear blue shoes every day.  I participate in Promise to Remember Me meetings.  I volunteer and do the walks.  Why?  Because I want to make others aware of diabetes, I want to educate and erase the myths, I want those who are in contact with my children to really understand diabetes, I want a cure.

So this year, I made ornaments.  To most people they are just pretty blue ornaments.  To me, they are another step to educate, to advocate.

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 ...

Saturday, May 7, 2011

It's Days like today ...

... when Diabetes reminds you that ultimately, it is in charge.  Despite our best efforts to care for our kids and to make their lives normal, Diabetes ends up ruling.   Today is Prisca's end of the year field trip.   Her orchestra class is spending the day in Charleston at the water park.  Normally I would go with her but, everything ended up being scheduled on today.  Thankfully her teachers our wonderful and she has plenty of eyes and ears watching over her.  I over-packed her bag with everything!  She is totally capable of handling her diabetes but, I will worry all day.  I was feeling good about this trip and confident that all will be well.  I still know that she will be fine but, dropping her off got to me.

Most of the kids have a towel and maybe a little bag to carry their towel and money.  Prisca has a book bag and small cooler.  She has a temporary tattoo in plain sight reminding her and those around her that in fact, she is different.  This is the very reason Prisca struggles with diabetes.  She hates attention especially the attention given because she is different.  Most parents send their kids off without a second thought.  Parents of kids with type 1 diabetes agonize over any imaginable scenario, pack oodles of juice boxes and snacks, make sure the adult in charge has "Big Red" and all medical information, we pack and re-pack their bags, worried about enough test strips, batteries, insulin pens, extra pump supplies.  Never being able to push the big "D" out of our minds.  We watch our children as they worry about being away from us fearing that their care is left in someone else's hands.  This is what is most unfair about this disease.  It's not the pain of a blood sugar check, it's not the pain of an injection or pump site, it's the pain written on our children's face, the pain that tells us no matter how hard we try to make life normal, it simply isn't.

Today I will worry.  Yes, she will be fine health-wise but, will she ever feel "fine" inside again?  Without a doubt, my kids are the strongest, bravest, most mature kids I know and they will always be my heroes.  I just wish I could take this from them and let them run off with their friends without a care in the world, I wish they could just be "normal" without Diabetes ruling their worlds.

Saturday, January 29, 2011

A very sad day

I didn't sleep much last night.  When I had signed of the internet, our diabetes family had lost 3 precious lives.  This morning I found out that this month, diabetes has claimed five lives.  I am in shock, I keep crying.  How and why is this happening?

I rarely sleep anymore as it is.  My fears are not unfounded.  When Lydia was diagnosed, the Dr said the likelihood of any of my other children being diagnosed was slim.  1 year and 4 months later, Trevor was diagnosed.  Of course, having a third child diagnosed was unheard of, according to the Dr.  Well, 7 months later Prisca was diagnosed.  The Dr tells us that complications and death are rare and if we are diligent we don't have to worry about it.  I used to be lulled into complacency by this but, no more.  Now I fear that every time I check on my kids, I will find that diabetes claimed one of them for its one.  Diabetes claimed my sister, Diabetes has claimed no less then 7 lives in the last 4 months.

What will it take to find a cure?!?

Today, I will go about my business with a very heavy heart.  I will hold my kids close, I will tear up when I look at them, and I will thank God for sparing them another night.