If Only They Could See Me

 

 

…through my eyes.

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So there is a saying that I say to my kids (especially my daughter) often.

“I wish you could see yourself through my eyes”

I tell them this because I see them as strong, smart, brave, beautiful kids with amazing souls. Now granted they can be little hellions too, but this blog isn’t about teenage hormones and how it is a cruel joke that God continuously giggles at.

Sometimes insecurities cause us to be our worst critics and it is then that I wish they could see themselves how I see them.

Tonight – I find myself wishing something different.

I find myself wishing some of those I love most could see ME the way I see ME.

Maybe it would help them understand me. Maybe it would explain a few of my several shades of crazy. Maybe it would allow them to let go of some of the UGLY they DO see in me.

I guess I should share how I see myself: (not all are positive but for the sake of honestly I shared everything I see yet nothing as bad as I sometimes thinks others see in me)

  • Honest to a fault
  • Overweight
  • Loyal
  • Loving
  • Outgoing
  • Outspoken
  • Trusting
  • Funny
  • Generous
  • Witty(ish)
  • Smart(ish)
  • Sarcastic
  • Positive
  • Quiet (when I am hurting)
  • Quick Tempered
  • Not quick to forgive (yet I almost always do)
  • Stubborn
  • Potty Mouthed
  • Scared
  • Irrational/Very Rational (depends on situation)
  • Meticulous yet slacking
  • Dorky
  • Far from graceful
  • Tendency to over react
  • Insecure
  • Brave
  • Strong
  • A good friend
  • Afraid of failing
  • Lonely

When it comes to diabetes I worry a lot but it doesn’t consume me. Not like it used to. I roll with it more often than I loose it. I admit it is harder with my daughter who is trying to exert her independence but not always doing what I think she should.

When there is a conflict between what I think she should be doing and what she thinks she is doing I become the enemy. It wouldn’t be fair for me to share all sorts of sorted details about recent disagreements so I won’t. She has a life to live after she leaves my home and although I don’t share my kids names those who know me, know who my kids are and sharing our dirty laundry with the world would be wrong.

That being said – if she and all my family could see me through my eyes they would see a mom and wife who loves them more than the sun, moon and stars – more than Reese’s (that says a lot). They would see me trying my hardest to hide the anxiety I feel when they are off doing fun things for extended periods with others that don’t know D like I know D. They would see me struggling with giving them space while trying to hold their hand. They would see me wanting the very best for them. Just enough sorrow to recognize the happiness, just enough strife to make them strong, just enough fear to make them brave, just enough rejections to make them know when they are wanted, just enough failure to help them succeed. They would see my heart break twice as hard as theirs when they are sad. They would see me want to ‘end’ those who hurt them. They would see my heart swell when they are happy. They would know I never want to yell, I don’t look for arguments, I don’t intentionally cause them stress. They would know how sorry I am when I make mistakes.

If they saw all of this maybe I wouldn’t be accused of looking for things to be angry about. I wouldn’t be accused of waiting for others to make mistakes so I could point them out. Being negative is the last thing I ever want to be. There are enough woes in this world without me looking for them.

I don’t know much in this world but I know how to love. I know I’m a good and honest person. I know I make mistakes. I know I’m not perfect. I know I use my ugly voice more often than I’d like. I know I’m always trying to be better.

I wish those I love could truly see me because sometimes the person I believe they see is not very pretty.

 

The Green Bracelet Post

Warning – This post is over 2300 words. It is also not funny. It was a hard post to write. I appreciate you reading it – maybe after you read it you will read the prior post and consider supporting our JDRF walk. Not trying to belittle the importance of this post by plugging for donations – the opposite.

Those that know me or have been following my blog know that I have two children with diabetes and a third child, Middles, that has been showing signs of developing diabetes and has been taking part in TrialNet to study the progression of the disease over the last 18 months.

In June I received word that Middles had failed his last Glucose Tolerance Test via TrialNet. His pancreas was not able to produce enough insulin to keep his blood sugar in range during the two-hour test. I shared my thoughts about his failing pancreas HERE.

Prior to our trip to the Children With Diabetes Friends For Life conference in July I had not been able to get him in for a confirmatory GTT. I had been watching him closely and checking his sugar periodically to keep him safe. While I had caught a number of elevated blood sugars (230s-250s) his body was able to correct itself within an hour or so. I had also caught a number of “low” blood sugars (50s -60s) but food corrected those.

We attended the FFL conference July 9-15. At registration the wonderful conference volunteer asked me how many green bracelets I needed. Adults and children with diabetes all get green bracelets. Those that do not have diabetes get orange bracelets.

Seems like an easy enough questions right. I had two kids with me that were already diagnosed so I should ask for two green bracelets. I must have taken too long to answer because the volunteer went on to explain who would get a green bracelet. I had been before so I knew what the green bracelets meant. Still I stood there unable to answer this ‘easy’ question. The volunteer seemed concerned. She reached out and touched my hand and as she did so I realized I had tears slipping down my cheeks. I jerked my head rapidly, somewhat like a dog would do to get a fly off its nose. I was doing it to stop the cascade of thoughts that had paralyzed me.

I told the wonderful volunteer 2 green bracelets. She asked “are you sure?” This of course lead to more leaky tear ducts. I explained that I have a third child that is on the verge of a diagnosis. Her beautiful face could not hide the sadness she felt for me and my boy. She patted my hand and said “I’m going to give you one of each for your son, you can decide when you’re ready.”

I can decide.

If only that were the truth. I know she didn’t mean that I could decide if my child had or didn’t have diabetes. She only meant which bracelet to use that would keep my son safe while at the conference. She (the volunteer at registration) is a wonderful soul and her kindness did not go unappreciated.

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Middles wearing an orange bracelet while visiting Harry Potter (Otter) world after attending the conference.

I put the orange bracelet on him. I had a number of reasons. First he hadn’t been diagnosed yet. Second, this could be his last conference without diabetes so let him have the orange bracelet for this one last conference. Third, my husband, bless his sweet soul, was/is having a terrible time acknowledging the fact that we will be 3 for 3. He already gave up his dream vacation in Hawaii to take us to the conference; I’m not sure he would have tolerated a green bracelet on Middles.

I brought the green bracelet home. I don’t know that I meant to. It was still in our registration envelope. But here it is, still pristine, not worn. The green bracelet that means diabetes. Thankfully at Friends For Life it means the Norm. It means you are never alone. It means you have friends for life even if you only meet them once.

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We had a fabulous time at the conference. My Middles did continue to show signs that a war was raging in his body. He was tired. He was cranky. He was starving. He was overly emotional. I checked his blood sugars daily but hadn’t caught any above 250, although he had a few in the 50s.

Why in the 50s? Because he is experiencing reactive lows. His pancreas can’t entirely keep up with his carb intake so his sugars go ‘high’ (200s) and his pancreas freaks out and goes into overtime making more insulin which in turn causes a low. This BTW is why his A1C is 4% (as of June 7th – it is likely higher now that I have seen so many numbers >250).

This is why an A1C alone should not be considered a diagnosis tool if it is within normal range. It is an average. The average blood glucose of a person with an A1C of 4% is 68mml. My boy is in the <80s more often than any other number – fasting, 4 hours post meal, middle of the night. However 2 hours post meal he is in the 180-250 range so his pancreas says “oh shit” and kicks out more insulin than is necessary to correct the high. Reactive Hypoglycemia.

Reactive Hypoglycemia is a chronic disease all by itself and is not always a precursor to diabetes. People with reactive hypoglycemia have to drastically change their eating habits to stay healthy. PWRH usually need to eat small low carb meals every 2-3 hours.

I do not believe my Middles simply has Reactive Hypoglycemia. His sugars are too elevated after a meal. My Sweetstuff had the same symptoms in the 6 months prior to her Type 1 Diabetes diagnosis. By the time she was diagnosed she was showing tell tail signs of diabetes including excessive thirst and urination. Middles does not exhibit those symptoms in a consistent way – they vary.

Basically because of his participation in TrialNet we are catching his diabetes very early.

It is my hope that we can start taking action now to preserve his remaining insulin producing cells and extend his honeymoon phase as long as possible. The honeymoon phase is the time after diagnosis in which the body still produces insulin so less artificial insulin is needed. It is not an easy time since the combination of artificial insulin and irregular productions of real insulin in the body can cause frequent hypoglycemic episodes. Still – this is an important time to be proactive to maintain the insulin production in his pancreas for as long as possible.

I started this post in July. I returned periodically to read/reread and edit. Since the time I began it things have changed. I wish with all my heart that they changed for the better and it was all a nightmare. A bad dream that I woke up from to find that I still ‘only’ was the mother of two kids with diabetes.

The bad dream is not a dream. It is a very real.

On August 1st at 11:45pm I learned the results of Middles confirmatory OGTT.

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Beginning OGTT. No idea what will transpire in the next 5 hours.

 359.

He failed again this time much worse than the first time he failed.

His fasting blood sugar before the test was 99. I do not have the 1 hour and 1.5 hour blood sugar readings. Truly they matter less than the final number of 360.

He had finished the test. I had my other two children and two additional children hanging out at the outdoor shopping center in Stanford while Middles participated in the OGTT. I needed to go get the other four children, feed everyone and then we were supposed to be playing on the beach by 1pm. That didn’t happen.

Instead when the test was complete and they did the final blood sugar check both with a blood draw that went to the lab and a finger stick we didn’t get to leave. The study coordinator came into the room wearing an expression that didn’t need words. We weren’t going anywhere for a while. I did leave for a few minutes to take money to the other kids and have them take themselves to lunch. Yes I cried during the 7 minute drive from the clinic to the shopping center and the 7 minute drive back.

Back at the clinic another nurse/CDE that works with various studies and at the children’s hospital came by to help determine our next steps. I had met this wonderful soul previously via a study my daughter is participating. I don’t know if she realized how much her being there helped me. I’m not sure if she realized how much her hug meant to me. Or how much it meant that she continued to check in with me the rest of the evening and the next day – even though Middles was not her patient.

Middles and I spent nearly 3 more hours at the clinic waiting for his blood sugar to return to normal range without administering insulin. It was 94 at 2pm. We were going to leave. Not to go to the beach, we were going to a lab to have more blood drawn to check other things like, thyroid, electrolytes, c-peptide (how much insulin he was making on his own), CBC and more. The labs needed to be taken at a laboratory affiliated with our own physicians. As we were leaving Middles said he felt sick. Within minutes he was vomiting. We stayed for a bit longer. When we did leave we were not going to the lab. We were going to the ER. I don’t believe it was high blood sugars that caused the vomiting. Although vomiting for people with diabetes can indicate a very serious issue. His vomiting was likely due to not eating anything except 5 cheese sticks all day, the stress of the diabetes diagnosis and the yucky glucose drink he had prior to the GTT. Still if a person being diagnosed with diabetes vomits in front of a number of diabetes medical professionals – you are sent to the hospital.

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at ER – not in a bed yet. Just waiting.

By the time we got to the hospital his blood sugar was 84 and he showed no symptoms of diabetes so the ER staff basically said “all is good” and sent us on our way.

I spoke with the endocrinologist the following morning. She had set up an appointment for the following Wednesday to see Middles. In the meantime we were to check his blood sugar before each meal and two hours after each meal. Also – avoid all fast acting sugars (candy, soda, sweets). I have been reluctant to share that last point. Sugar can not cause Type 1 diabetes. Avoiding sugar can not reverse type 1 diabetes (or any diabetes). Middles has diabetes and there is nothing we can do to make that not be true. However, since he has some insulin producing ability we want to avoid stressing the pancreas and causing reactive hypoglycemia.

His appointment went well. His A1C is up to 4.9 which is still well within ‘normal’. The endo officially confirmed his diagnosis of type 1 diabetes. She wants to start him on Lantus, a long acting insulin but before that happens she wants us to continue to check his blood sugars for a bit. If I catch numbers above 250 we will start the Lantus. That was yesterday. The 5 days prior to the appointment I had not caught a single number over 159.

Tonight – he is 359 – one week exactly from the GTT that resulted in the same exact number. Thursdays suck.

We now officially have 3 kids and all 3 kids have Type1 diabetes.

I don’t know why. People will ask lots of questions that I don’t know the answers to. They already asked when it was ‘just’ two kids. They will ask how its possible (dumb luck). They will ask if it runs in the family (it doesn’t – no other cases). They will ask how I manage it (they will have a pitiful face when they ask – and I’ll answer some days I do better than others – I have strong, brave kids which helps).

Then there will be people who want to know more details – did I not breastfeed?, did I drink while pregnant?, did I pour corn syrup down my babies throats?,  etc. These people want me to say “yes” to any and all the questions that they believe might suggest I didn’t do right by my kids, that way they can sleep better at night believing that all the things they did do right will keep their kids safe. I don’t blame these people – diabetes is scary and when there is no logical explanation it is scarier. (Just FYI – I did breastfeed for 18+months each kid, I did not drink alcohol, I did not feed my kids concentrated sugar or even a lot of regular sugar – just the normal amount most parents would deem acceptable.)

My Middles is doing great with all of it. He and I have talked about it often in the last few months and even before that. About a week before he failed his last GTT after I caught a 232 on the meter I asked him if he was scared about diabetes. This is what he said – verbatim (I know this because it was one of those moments I loved him so much I wanted to absorb him into me).

“I would be afraid if I didn’t see Sweetstuff* and Sugarboy* do everything like it was easy. I mean I know it’s not easy but they do it and they are fine and your friends* do it and they do everything they want. I’m just a little worried about counting carbs.”

*He did not refer to his siblings using their blog names – he used their real names.

*The friends he was referring to are my adult friends with diabetes that he met at the Friends For Life conference.

If right now my Middles biggest worry is about how to count carbs than that’s ok with me. He is so very smart, kind, generous and brave. He is also my most tender-hearted child and I pray with every ounce of my soul that diabetes does not make him hard.

For now….

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Also change twitter handle from @momof2t1s to @momof3t1s – suckage (total state of suck).

 

 

 

Unexpected Heroes

This is not the green bracelet post I promised. Still working on that.

Each year at the Children With Diabetes Friends For Life conference individuals are recognized and awarded a plaque identifying them as Unexpected Heroes.

As a conference attendee I am not privy to why or how individuals are chosen. I have great faith in the CWD organization and I am certain that deciding who to recognize is a difficult process – I mean so many individuals put so much into making FFL an amazing experience for all of us.

What I want to do is recognize a few individuals that are heroes in my book. I can’t present them with a beautiful plaque or standing ovation but I can offer them my respect and appreciation for what they do and who they are.

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An The Unexpected Hero Awards go to….

 

First up – Richard Vaughn

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Richard’s the tall guy in the sweater. 😉

Richard has been living well with diabetes for over 67 years. That is 60 years longer than my youngest son. He is the author of ’64 Years of Diabetes Health’ and author of his blog Richard’s Rambling Review. Sadly I was never able to sit and chat with Richard – not that I didn’t try to find him during meals, I would have happily broke bread with him. I did have the opportunity to introduce myself briefly, shake his had and pose for a photo with some other wonderful friends.

I saw Richard from a far a number of times during the conference. He walks with great confidence but is also very humble and certainly looks the part of a college professor (now retired),  Hands clasp behind his back and his eyes scanning the world with constant curiosity.

When I read Richard’s words it gives me hope, and strength. I don’t ever imagine my kids with diabetes doing less than all they dream to do but still knowing Richard has done so much and lives so well is inspirational. I doubt that he ever set out to be such an inspiration which makes what he has done, is doing and who he is all the more meaningful. I hope when Richard returns to Friends For Life he will host a break-out session and I will be able to attend to hear him speak.

Next up – Moira Stanford

Sadly I have no pictures of Moira from the conference. Thus you get to enjoy this awesome one of her on skies.

Sadly I have no pictures of Moira from the conference. Thus you get to enjoy this awesome one of her on skis.

Moira is a mom of an adult with type 1 diabetes. Of course her daughter wasn’t an adult when she was diagnosed with Type 1. Moira shares her struggles and strengths in her book Raising Teens with Diabetes just recently published and already a 5 star book on Amazon. I was able to pick up a copy of her book back on June 25th. Sadly I haven’t had a whole lot of time to read it just yet (house guest and traveling ate up all my time between June 25th and now but it is at the top of my nightstand book collection already with pages dog-eared.) Here is one of the glowing reviews Moira’s book recently received. She is also the author of the blog Despite Diabetes. I’ve been reading Moira’s blog for sometime and she is and has been a real inspiration – leaving me with a desire to be as good as she is and was while raising her daughter.

Moira spoke at the opening breakfast of the conference. Her words of wisdom, strength and support resonate with me. Being part of the “yes” club is my highest priority with my kids. Allowing them – encouraging them to do everything they want to do and not allowing diabetes to deter us – them.  I’ve not always been successful with being part of the “Yes” club. My biggest challenge is sleep-overs but that was gonna be a challenge without diabetes based on my husbands up-bringing and the idea that kids should always sleep at home or only with family. Moira’s message about the ‘yes’ club wasn’t only about encouraging our kids. It spoke to us Dmoms as well. Despite diabetes Moira and her daughter have continued to do what they love. Moira didn’t hang up her skis (HUGE fan of downhill skiing and quite the acrobat on skis) or allow her career to be derailed and still her daughter is successful, healthy and a strong person and advocate – perhaps more so because of Moira’s strength and perseverance as a guide. I see that lesson as don’t be a bad example for our kids – don’t give up what we love because of diabetes – we wouldn’t want them to, so why should we?

Thank you Moira for your words, your inspiration and your friendship. It is all as priceless as you.

Last up but not at all the least – Meri of Our Diabetic Life

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I doubt I need to tell anyone but Meri is the beautiful blond on the left. Also pictured and a hero is Wendy of Candy Hearts in center.

Meri is a hero to many for her words on Our Diabetic Life, for her tireless support and her limitless love. Meri was asked to speak at the opening breakfast. She was asked to share her love for a man near and dear to the diabetes community. Meri loves with her whole heart, her entire soul – if love is a person it walks the earth as Meri. Meri is also no stranger to loss and hearing her share her loss with the entire community as we all mourn the loss of Richard Rubin, an extraordinary member of the diabetes community, was a humbling experience. Meri’s words and story make me want to love harder, love louder, love more unconditionally, treasure the moments I have with my family and friends and say “Thank you for another day”.

If you read my silly ol’blog you undoubtedly already read Meri’s. But in case you missed it, here is Meri’s post about the time she made us all love more (she doesn’t call it that – but that’s what it is to me).

Thank you Meri, Moira and Richard. You all make me want to be a better person.

You are my Heroes.

 

You’ve Got Mail

Day 6 Health Activists Writers Month Challenge

Today’s Challenge – Write a letter an older you (tell us what age you’re writing to!) What do you want to ask yourself? What lesson do you want to make sure you remember?

I write as a caregiver – as a parent of 3 kids (2 with type 1 diabetes). 

Dear 44-year-old me, (yes this is only 5 years away but it will be a pivotal year for me and for my oldest child with type 1)

Do not be scared. What the hell am I suggesting – of course you’re terrified. Let’s try this again – get up off your shower floor where you have been sitting crying so that your family can’t hear you. Get dressed and maybe choose something blue for diabetes awareness. You got this but more importantly she’s got this.Today your oldest will leave for college. This day is scary and sad and exciting for nearly all parents but yes it is scarier for you. She will be fine. You have supported her well. You have taught her all you can and she is ready. She is smart, she is strong, she is independent and she is a mini you but without the insecurities. She is an advocate for herself and for others. She has never accepted defeat and that wont change when she isn’t under your roof. You knew this day would come and you have put every ounce of yourself into making sure she would be successful, safe and happy. You wont be able to protect her from everything. Boys will break her heart. Girls will still be ugly. She will stay out too late and oversleep. She will procrastinate with her studies and cram for exams. So did you and you turned out just fine. She has all the tools she needs to be successful and safe. She will still bring laundry home and you will do it because you’ve missed her. She might change her hair color, get her ears double pierced, or maybe even a tattoo – you will roll your eyes but secretly wished you had got a tattoo when you were young, skinny and looked good in a bikini. She will call to ask for money and you will babble on about responsibility but in the end you will add money to her account regardless. She will be fine. She will miss you and she will call. When she does don’t ask about diabetes first.

She is braver than you believe, smarter than you think and stronger than she seems.

Let her go – it’s time to share her with the world – she will be fine fantastic.

-Me

PS. Don’t go smothering your boys after she leaves. It will drive them insane.

 

May The Force Be With You

I’m a Dmom. I have two kiddos with Type 1 Diabetes. My job as a Dmom includes any number of things that are normally done by a person’s pancreas but the thing I want to share about today is night-time blood sugar checks. Im not going to suggest that all Dparents need to be doing night-time checks or suggest that night-time checks are unnecessary. Those are personal family decisions that can change daily. I was just reminded lately of a specific night-time check that still makes me giggle years later.

Having two kids with diabetes means the odds are against me when it comes down to getting a full nights sleep. When only one of our kiddos had diabetes I would get to sleep through the night three maybe even four days of the week because blood sugars would be playing nicely and other issues (amount of activity that day, what was for dinner, active insulin still working in my child’s system) were not factors. When my second child was diagnosed the chances of a full nights sleep decreased since all the factors for both kids were less likely to gel.

To check a night-time blood sugar a few things are necessary. First, I need to set an alarm to wake me. This means my alarm clock has to be outside my reach. In my home in Texas I kept my alarm clock in my bathroom, 15 feet from my bed. Thus I was required to get out of bed to turn it off and the chances of me sleeping through it were slim. Second, I need to have the kids glucose meters in their rooms. Normally this isn’t an issue since I check them before I go to bed but there have been times when the meters are left downstairs and so I would need to navigate stairs in the dark to retrieve the meters. Other times the meters would be in their rooms but they would be lacking test strips – this too required a trip downstairs. Third, light. While some meters such as the VerioIQ (we can’t use the Verio because our insurance won’t approve the test strips) have a bright display and a light to illuminate the testing area (finger) our meters do not have a bright LCD display or a light. Without a bright meter a certain amount of bedroom light is necessary to check a night-time blood sugar.

One night a couple years ago I went in to test my son’s blood sugar. I twisted the switch on his bedside lamp but alas no light came. Reluctantly I flipped the wall switch, hoping my boy did not wake up, but that too would not illuminate (light turned off high above via the chain on his light/fan combo). I was tired and likely only half awake so I grabbed the next available light source.

Yes it was an authentic replica of a Star Wars lightsaber. It was a Christmas gift the prior Christmas. It is exceptionally bright and makes the coolest and most realistic lightsaber sounds. I turned it on and heard the ‘whoosh’ sound so familiar to any Star Wars fan or mother of young kids. I wielded it through the room as whooshing and swooshing sounds echoed around me. It provided the light I needed to test his blood sugar which was behaving well. I turned to find my reflection in his dresser mirror. Sporting my bubble gum jammy pants and cami, hair disheveled and face puffy from waking at 3am – yet I stood there waving my Jedi weapon feeling incredibly powerful.

Diabetes has the potential of many terrible complications. I have no desire to go into the physical complications but I wanted to make note of an emotional complication that effects both people with diabetes and those that love them. It is a feeling of being powerless or weak. There are days that Diabetes kicks my butt. On this night in the blue glow of Obi-Wans lightsaber the Force was with me and I felt powerful.

The photo above was not taken the night described above it was taken just last week while chatting with a DOC friend about Star Wars around midnight (yes I am a nerd). I was not blogging back when I used the lightsaber to check a sugar and thus had no inclination to take a photo but having snapped the picture last week I  decided to share the story now for the Day 9 prompt – Tell a story about a memory – from the National Health Blog Post Month list. I am 10 days behind the challenge due to travel, construction and life.