Sunday, October 7, 2012

Five Years...



 I can't believe it's been five years. It feels like so much longer...much, much longer than five years.

I will never forget that weekend. It was the weekend of the Greek Festival and we had been very busy. We spent that Thursday evening with friends at the Festival dancing, singing...and taking multiple trips to the Port-A-Potty. Lily went through a few sippy cups of water that night. She was dancing like any crazy 3-year-old would when there's a live band. It was 100 degrees. I didn't think much of it.

I had been telling my friends that she had been tugging at her panties all week. Her Mother's Day Out teacher had mentioned it and her grandmother had as well. They suggested I take her to the pediatrician the next morning to see if anything was going on. So, we got up that Friday morning and headed to the doctor. I told him about the panties and that I was concerned she had a yeast infection maybe. He checked her externally and sent us home. He didn't find anything wrong.

That evening, I told Lily's dad about the visit. He was upset that he didn't do a urine test since she may have a urinary tract infection. I had never mentioned the multiple trips to the bathroom and the excessive thirst from the night before. It didn't seem out of the ordinary to me except in hindsight after her diagnoses.

We woke up that Saturday morning and got ready for a birthday party. We made what we thought would be a pit stop at the pediatrician to have a urine test done. I spent a LONG time trying to get my toddler to pee in a cup. I was frustrated. She was frustrated. We sat and waited for what seemed like an eternity for the results to come back. We were late for the party now and I was not happy. Lily sat in her leotard playing quietly. The doctor came in with a sullen look on her face. She said that Lily had high levels of glucose in her urine which usually meant type 1 diabetes. My ears got all fuzzy. I couldn't make out what she was saying. Diabetes? What had I fed her for breakfast? Did she have a lot of sugar? She asked about excessive thirst and urine...my mind went straight to the Greek Festival at this point. Her blood sugar was in the 300's. This wasn't normal. This was high. My mind couldn't process anything. My heart was racing. I knew something very scary and bad was happening at this minute but I didn't understand what. I knew of diabetes but I knew nothing about it. At this point, we were sent to the ER. Her daddy took her while I went home with her almost 1-year-old sister. I waited and waited calling her dad every few minutes for updates.

They sent him home. She had no ketones yet. They sent her home...this still baffles me. Her blood sugar was very high and they sent her home. Space issues. Her daddy brought her home and was angry. He comes from a family of physicians and he knew EXACTLY what was going on. He understood. I was in denial. He had her pee on a ketone stick and it was dark maroon...VERY high ketones present. She was in danger of going into DKA. I only get this now.

He went back to the ER. I got a babysitter and followed. Within a couple of hours, she was admitted and was given a diagnosis of type 1 diabetes. Insulin forever. Shots forever. Finger pricks forever. Counting carbs forever. Fear of Dead In Bed Syndrome forever. I didn't shed a tear except once in the shower. A defense mechanism. I had to be her rock. I had to get her through this. I had to make it okay. She was scared and confused and didn't understand why we were hurting her multiple times a day by piercing her skin with needles. It took us a few days to realize that the lancet device (that you check her fingers with) from the hospital was very painful. It was taking two nurses to hold her down while I checked her fingers. How the fuck was I going to do this alone for the rest of our lives? Someone gave me a new "popper" as we called it. She didn't flinch. She was fine. She didn't even wake up when I checked her anymore. Damn hospitals. Damn me for not knowing enough. Things got better from that point on. We did research. We learned how to count carbs. We learned the facts about type 1. We learned that she can lead a normal life. We learned that yes, she can eat cupcakes and pizza at parties. She just needs insulin. She is powered by insulin.

With that, we also learned the fears and worries. We learned that Lily couldn't just go to school anymore. She couldn't be dropped for playdates. We learned that some friends weren't willing to include her in activities because of their fear of the disease...or they didn't want to deal with it. We learned who were true friends as well.

So much has come from diabetes, both good and bad. The bad is obvious...my child has a shitty disease that has a mind of it's own. If you try to control it, you will spend life chasing your tail. If you don't try to control it, you will lose your child. After five years, it is part of my life. It's part of my thoughts. It has become a part of our life that is there and always thought about but not obsessed over anymore. It's part of our routine. The first year or so it was all we did. All we thought about it.

The good...well, Lily is a more mature, passionate, considerate, sympathetic, courageous, and brave little girl because of what she has been through. She thinks life is precious. She is right. She has plans. She has a future. She knows she is special. She is very much her own person. Nothing makes her change who she is. If she meets a friend that she feels isn't a good friend, she quietly moves on. She wants no part of the drama little girls create. She is so confident and that is the best gift this little girl could have. She is a hero to so many people. She chooses to live her life and love her life. She has tons of questions about diabetes and why she has it, why people are sad when their kids get it, etc. There are so many teachable moments as a parent with her. She gets it. She gets life.

Lots to say today. This is always a very emotional day for me. There is a break in my past. I see pictures from our trip to Martha's Vineyard and that is our last vacation before the big D. There's a line in my history. Before diabetes and after. I pray every day that a cure is found but I have to say, I am not always so full of hope. It seems so far off. It is so far off. I have learned to not lean on the hope of a cure too much...I try to focus more on teaching Lily how to LIVE with this and how to keep herself healthy always. I try to teach her how to make good choices. It's working...the kid won't eat fast food and wants to exercise. She thinks being too skinny is a sign of being unhealthy. She sees people that are grossly overweight and she asks me why they made bad choices. Teachable moments. It's a fine line.

Bottom line, I love my baby. I am proud of her. I am proud to be her mother. We are a team. We are closer than close can be. She is my hero.



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Friday, September 14, 2012

Chronicle Blog


I have been writing on my blog for the Houston Chronicle site so you can read there!

http://blog.chron.com/mealmommy/


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Saturday, September 8, 2012

To Be Inspired...

 Inspiration: The process of being mentally stimulated to do or feel something, esp. to do something creative: "flashes of inspiration".

Being inspired is a little flash of life. A reminder that you are ticking and need to keep ticking. I was inspired last night. I kept it quiet while it was happening. I was enjoying a movie but thinking to myself the whole time...acknowledging this pull that was happening. The story was pulling my heart in a direction that it has been pulled so, so, so many times in my life. The Words. A movie about stories that only the deepest and meaningful words can tell. Words travel through my mind incessantly. They stream together into little stories. A poetic journey in my head and heart. I have to write. I love to write. I have a hole in my life when I am not writing. Why have I never REALLY tried this? Fear is why. It's something I love so dearly and if I failed...then what?

So, the movie ends and my love and I go sit down to finish our drinks. He looks at me and says, "Were you thinking what I was thinking the whole time?" I stared at him blankly and said, "No clue. Tell me what you were thinking." He said, "That you need to be writing and that's what's missing. I miss waking up to see what you wrote the night before."

I smiled and almost started crying. I was not surprised at my reaction. One, because it's yet more proof that this is the man I am meant to spend my life with. No one understands me like him. Second, he was so very right. For someone else to validate what I was feeling was very emotional for me. Still is. He has encouraged me to acknowledge this inspiration and to try to overcome my fears and have some fun with it. Words are free. It costs me nothing to try to follow a dream. I have no idea what to write or how to start but I am going to continue to allow myself to tick and find the passion and put it into words.


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Tuesday, December 6, 2011

It's Official!

 I haven't written a post in SO LONG. I have been so busy traveling and parenting and working...and well, just living life happily.

I read a great post today about letting your children live with diabetes. We have Lily's quarterly appointment in the morning and I am dreading it. I always wonder if her A1C has gone up. How are we doing with her management? Is she at risk for long term complications?

Then, I get on Facebook and see more blue candles. I chose not to change my picture this time. I said a prayer for the family of the last victim of diabetes. And I shut down. It's just too much sometimes to carry all of that worry. I check her several times a night usually and keep on top of her. I am having trouble in the dinner carb counting area and getting her postprandial numbers under control after dinner. That's my current nemesis. But I worry constantly about her teen years. It seems as though a lot of the deaths are happening between the ages of 11-21. I don't know why. It just scares me. So it was nice to read this post and have someone else verbalize what I am feeling most of the time!

On a lighter note...it's official...this D Mama is getting married!!! My love proposed last Friday at the airport in Tucson...on one knee and all in front of the world. It was amazing and romantic and I am just so damn happy! :) I'm excited to get our life started as a hitched couple! Of course...I can't stop staring at the sparkler either. Life is grand my friends.

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Monday, November 14, 2011

Are You Blue?

Today is World Diabetes Day! This day was named as a day of awareness for diabetes. November 14th is also Dr. Banting's birthday, the founder of insulin. So, Happy Birthday to the late Dr. Banting...thanks for keeping my child alive and not giving her a death sentence!

Diabetes rocked our world. Changed it forever. Within a 30 second time frame of hearing that word, diabetes, our world became about numbers. Every thought. Every action. Every breath...literally...became about a number. A number that will keep my child safe and healthy and breathing right next me...living her wonderful, little life.

So, I advocate and make people aware of this disease in hopes of saving other children's lives whose symptoms may go unnoticed. And in hopes of raising money for the research so desperately needed for a cure for my baby and the other 3,000,000 people in our country living with this daily.

Here are the facts, taken from the Juvenile Diabetes Research Foundation's website.

Fact Sheets: Type 1 Diabetes Facts
Type 1 diabetes is an autoimmune disease in which the body's immune system attacks and destroys the insulin-producing cells of the pancreas. While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved.
Affects Children and AdultsType 1 diabetes strikes people at any age. It comes on suddenly, causes dependence on injected or pumped insulin for life, and carries the constant threat of devastating complications.
Needs Constant AttentionTo stay alive, people with type 1 diabetes must take multiple insulin injections daily or continually infuse insulin through a pump. They must also test their blood sugar by pricking their fingers for blood six or more times a day. While trying to balance insulin doses with their food intake and daily activities, people with this form of diabetes still must always be prepared for serious hypoglycemic (low blood sugar) and hyperglycemic (high blood sugar) reactions, both of which can be life-limiting and life threatening.
Not Cured By InsulinWhile insulin injections or infusions allow a person with type 1 to stay alive, they do not cure diabetes, nor do they necessarily prevent the possibility of the disease's devastating effects, which may include: kidney failure, blindness, nerve damage, amputations, heart attack, stroke, and pregnancy complications.
Difficult to Manage Despite paying rigorous attention to maintaining a meal plan and exercise regimen and always injecting the proper amount of insulin, people with type 1 diabetes face many other factors that can adversely affect efforts to tightly control blood sugar levels. These factors include stress, hormonal changes, periods of growth, physical activity, medications, illness/infection, and fatigue.
Statistics
  • As many as three million Americans may have type 1 diabetes. 1
  • Each year, more than 15,000 children and 15,000 adults - approximately 80 people per day - are diagnosed with type 1 diabetes in the U.S.2
Warning Signs
Warning signs of type 1 diabetes may occur suddenly and include:
  • Extreme thirst
  • Frequent urination
  • Drowsiness or lethargy
  • Increased appetite
  • Sudden weight loss
  • Sudden vision changes
  • Sugar in the urine
  • Fruity odor on the breath
  • Heavy or labored breathing
  • Stupor or unconsciousness
    Be aware! Wear blue today in honor of our loved ones!!!

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Thursday, November 10, 2011

The Lows...

Another life was lost this week. Another family woke up to the harsh reality that they will never hear their child laugh again. They will never walk her down the aisle or hold her hand in a delivery room. She was gorgeous, glowing, in the picture I saw of her. She was a person, I'm sure, with dreams of a future and many, many plans.

It gets harder and harder for me to talk about diabetes and I don't know what is going on with me. It gets harder and harder to write about it. I keep thinking I need a break but I think the realities of diabetes are just too much at times.

I hear people complain all the time. They complain about how hard their lives are...how much they have to handle around the house and how little time they have. I feel like screaming at them, "wake up and realize how lucky you are and quit bitching! You get to sleep at night without thinking your child might die!" I can't figure out if I am bitter or jealous or just fed up...or just really pissed at diabetes lately. I just don't know.

My life is amazing. My children are amazing. They are the biggest love I have ever known. They are so much bigger than life to me. It's indescribable how I feel when I touch them, smell them, hear them, watch them...they are angels. I have to catch my breath a lot when I just sit back and take them in...my girls. They are the most important thing in my world, without a doubt. You become somewhat selfless when you have a child. Everything shifts inside of you. It's awkward and beautiful and comforting and frightening all at the same time. The thought of losing one is just too much.

Because of that, I check her religiously at night. I monitor her numbers closely. If she is a certain number at 10 or 11, I am up at 1. If she is a certain number at 1, I am up at 3. If she is a certain number at 3, I am up at 5. I monitor how much insulin is working in her system and take into account how many carbs and the type of carbs she ate before bed. I think about what she did during the day...did she play hard and exercise a lot because that can cause a severe low at night, many hours later. Is it cold out? Her body works harder to heat itself up and that makes her lower. Do I need to do a temporary setting (basal) on her pump to ensure she stays a bit higher? Do I need to check her ketones if she is too high? And I am doing all of this thinking in the middle of the night so that my child will wake up in the morning.

Two nights ago, I awoke her at 2 AM to change what I thought was a bad site but it was just a miscalculation of carbs at dinner. But I woke her at 2 AM to shove a needle under her tummy while she cried. I then held her while she fell back asleep. I got up two hours later and two hours after that. Then, I was up at 5:30 AM to go to work.

It's grueling but it is my life. I am used to it. The alternative...DEATH...is just not an option so I do it without complaint. We all do...all of us D Moms and Dads (my ex does the same) out there, the Night Stalkers as I like to say.

I want people to know what goes on in the house of a family with a type 1 diabetic. I want you to know so that you can tell people and they will tell people and the word will spread and maybe, just maybe...a cure will come along in Lily's life. That's all I dream of...every second of every day.


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Sunday, November 6, 2011

The Ad...

 I edited this post this morning after I reread my rant. Diabetes hits me hard at times. And reading the statistic on the ad hurt. It hit home. It made me feel sick and cry while I laid in my bed last night. No one wants to hear that their child has any sort of chance of EVER dying. BUT...the point of the ad is to raise awareness and get the Artificial  Pancreas and trust me...it's needed.

November is Diabetes Awareness Month. November 14th is World Diabetes Day. I have done nothing this year and this is the first year that I have ignored everything diabetes related. I have been trying to just live our lives and not let this all-consuming disease consume me. I have always had trouble with the all or nothing thing. If I choose to do something, I can't half do it. Not possible for my personality. So, with diabetes, I made it my world. My everything. My job. My mission. My life. I have trouble separating, or balancing, or whatever.

So, I have taken a break from blogging too. Even the Chronicle blog...right after I started it. I have been on overdrive with a new job...with the girls...with my life. And then, I read an email tonight with the JDRF ad for the Artificial Pancreas and I am pissed. I am seriously pissed off. I don't want to know that 1 in 20 people with Type 1 diabetes is going to die from a low blood sugar. I already don't fucking sleep. None of us do. I am so sick of the focus being on death. I want the Artifical Pancreas JUST LIKE EVERYONE. I want the awareness. I want the FDA to approve it. I don't want to hear that my child has a 1 in 20 chance of dying from going low. I can't hear that. I can't understand that. It is too much pain to deal with...it's too much pressure, too much stress.

I want those statistics to change and that is why I support the JDRF. That's why we walked. That's why I adore my chapter here. Something needs to be done to change that statistic. It can be read in a much less scary way...like 5% of those with type 1 will die from hypoglycemia. The 1 in 20 is much more powerful. But I don't ever want to see that ad again and I want to store it away in the "too scary to think about" part of my brain storage.



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