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.

IMG_1962 copy

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.

orangephoto

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….

raisehellphoto

 

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

 

 

 

About Christina Ghosn

Mom of 3 kids, all 3 have Type 1 diabetes - I blog to share stories. I am not a medical professional and my thoughts are my own. Please do not make changes to your medical care plan based on my stories - always consult your medical team. Hope you find something in my ramblings helpful and or amusing. You can find me on twitter @momof3type1s and on my Facebook page Stick With It Sugar. May all your dreams forever be bolus worthy.
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68 Responses to The Green Bracelet Post

  1. katy says:

    sorry sorry sorry.
    thanks for sharing your story.
    he\’s a trooper.

  2. c says:

    I shed tears as I read this, though I live with diabetes, because I felt I could feel the pain and hesitation in your words. Although you already know how to manage diabetes, it still causes pain and anxiety for the parent to have another diagnosis. No parent wants to see their child struggle or be ill or live with chronic illness. The difference is that Middles is never alone in your household. His siblings and his parents understand. They will walk the journey with him. From that, I hope you take small comfort. He, and you, can do this.

    • Christina says:

      you speak the truth dear C. I may appear to be holding it all together and honestly I mostly am but there are moments I get very sad and very angry and want to text friends 3000 miles away at midnight. People will ask how/why I have 3 kids and they will assume that my oldest was diagnosed first and then middles and then my youngest – I’ve realized that is just how people think. I am grateful middles was last – like I said he is my most tender-hearted and I don’t know that he would be as strong as he is now any earlier. Texas was not a good fit for him. He was bullied often for wearing glasses and not excelling at sports. HEre in CA his fits right in, has a great group of friends and is more confident that he has ever been – I don’t know what the Big Plan is but it is clear to me that we were put in the right place before he was diagnosed. Sorry didn’t mean to get all weird about it – it is just something I feel. Thank you for your kindness and support – means so much.

  3. Brea says:

    So so sorry to hear this. Hang in there! You know the DOC is always here for support.

  4. Cassie says:

    I have no idea what to say that could even begin to be a comfort to you. You have been on my heart and in my mind almost constantly here lately. Big hugs to you. Email me whenever. I can send you my cell number if you’d like. Whatever I can do to help support you.

    • Christina says:

      Thanks Cassie. Trust me when I say yours and so many other comments have been a wonderful comfort. Thank you for the hugs too and Id love your cell number but please don’t share it here. You can shoot it via email. I do like to chat with new friends. I love hearing real voices (they drown out the voices in my head).

  5. Karen says:

    Oh, Christina. Oh. Hugs to you and Middles…and your husband. I know daddies want to stay in denial as long as possible. And I’m betting SweetStuff and SugarBoy will be the best cheerleaders for him. I can’t say anything without feeling like a fool who knows nothing…just know that my heart is filled with love and prayers for your family.

  6. Brea says:

    So so sorry to hear this. Hang in there. Your kids seem strong and brave, just like their mom. You know the DOC is always here for venting and support. Hugs!

  7. Jenn says:

    No words.. only hugs.. lots and lots and lots of them.

  8. laura says:

    no words. just heartbreak, hugs, love and hope.

    • Christina says:

      Thanks Laura. I had a year to prepare myself for another diagnosis, not just 4 days. You are a hero to me because in the middle of all the chaos of the first diagnosis you held it together with a second.

  9. Christina, I am so sorry to hear that you now have three type 1 children. I had to shed some tears when I read your blog. It is encouraging to hear that Middles is taking it so well. His siblings will help him and they will certainly make everything easier for him. Tell your kids I wish them well, and I want to meet them if they attend the FFL in 2015.

    You are a brave soul, Christina, and so are your children. You and Meri have so much in common. I am sure the two of you communicate about this.

    Good luck to all of you!

    Richard Vaughn

    • Christina says:

      Thanks Richard. Your words mean a great deal. Middles has been amazing and diabetes should be afraid. I certainly hope we will all see you in 2015 – saving up now.

  10. Joanne says:

    Oh man… This post was hard to read. Between the craptasticness of it all and the tears that were spilling out of my eyes, I’m amazed I could finish. I am so, so sorry that this has come to pass. I wish I could give you a big hug right now. Would you settle for a virtual one.

    I do love his response though, evidence that he will be just fine. And I know you will too. Having met you, I know you will handle this last dx with all the grace and gut-splitting humour that is your style.

    And when you can’t handle… We will be here for you. Love you. You got this.

    • Christina says:

      Thanks Joanne – Im so thankful for FFL so that I can hear your voice while reading your words. I love all hugs – virtual or IRL. You are right the humor will come – I should have endless material with three cwd – although I may have too much diabetes in my life. ;)

  11. Joanne says:

    Holy typos batman.

    I blame the crying. Damn you tears!!!

  12. Awww, so sorry about the third diagnosis. What an awesome mom you are, and your kids are so positive and brave. I met a mom last year who has three kids with type 1. They are grown now. So far, I have only one type 1 kiddo, out of three kids. I hope it stays that way, but if not, I will take strength from your family’s wonderful example.
    God bless,
    Lisa

    • Christina says:

      Oh Lisa I hope and pray you will forever only have the one. Truth me told the multiples is a very exclusive club – we are certainly not the norm.
      Thank you for the kindness and support. Means a lot.

  13. Katie says:

    No words, just sending my support. The DOC is giving you a *hug*.

  14. k2 says:

    You and yours = AMAZING & I just want to reach out through the interwebz and give you all hugs!
    You & yours can and will do this – You& yours are doing this!!!
    And if there’s anything I can do to help – just let me know.
    Love you!
    xoxo

    • Christina says:

      Thanks Kelly – your support here and in other media has left me truly humbled. I wish all parents of CWD and PWD would find there way to the DOC so they can experience all the love. It changes lives.

  15. Mocha says:

    I remember meeting you at this past FFL and introducing my mom to you and Meri at the You Can Do This Project booth (she’s also 3 for 3).

    I’m sorry you had to join the 3 club. *offers hugs*

  16. Leann says:

    I don’t have any other words other than “I’m sorry” and “thank you”. Thank you for sharing this, no matter how long it took to craft it. And I’m sorry that you had anything like this to share at all. My heart goes out to you.

    • Christina says:

      Thank you Leann. Not that others are ever allowed to say it to me or other people in the diabetes community – but – there are worse things and I have strong amazing children that can handle this. Ive said it before but will continue to say it – diabetes should be afraid.

  17. cathy says:

    Thinking of you all. X big hugs.
    From Cathy in UK.
    Diagnosed Type 1 at age 9 in 1973 – age 50 this year and doing great!

    • Christina says:

      oh Thank you for sharing Cathy. I love hearing stories like yours and will be sure to check out your blog too. Thank you for the hugs from across the pond as well.

  18. Tammy says:

    I don’t have the words to really express my thoughts & feelings. As I sit here with tears reading this, my heart is breaking for you.

    I have tremendous faith that Middles will do just fine. He has an amazingly strong mom to guide him, & 2 siblings who are incredible role models for him.

    Stay strong. Sending huge virtual hugs.

    • Christina says:

      Thanks Tammy. I have been so impressed with my little Middles. He is a glass half full kid and has already been pointing out the ‘good’ things: gets to keep cell phone on him at school, gets to go to Dcamp, gets to take part in paid studies regarding new D technology (his siblings have both participated in paid studies using new D tech), gets to meet new kids that are just like him. He also hopes that since he was diagnosed so early in the progression of the disease he can be involved in other studies that help doctors understand diabetes better. I promise this is the truth – the things he has shared with me in the last week. Even after hearing the news on Aug 1st he didn’t cry, didn’t get angry, just nodded at the doctor and nurses and said please and thank you for everything. I love my kid.

  19. Chris Dean says:

    I’m sitting here with tears rolling down my cheeks. In part because my heart is aching for you and your worries for your kids. In part because you have raised such amazing children.
    There are no words I could say, so I’ll just settle for I love you lady! You and your amazing family.

  20. Scott E says:

    As a parent I see how this can be unbelievably difficult — but I also know that a parent’s #1 priority is the kids (well, for good parents anyway, which I know you are). The amazing thing is that the kids not only help to shape a parents’ priorities and adapt responsiblities, but they give their parents’ an unimaginable amount of motivation and strength as well. It’s the reason parents with a will always find a way — and why I know you’ll be just fine.

    But from Middles’ perspective — as far as T1D’s go, he’s got to be the luckiest one on earth. Not only was it caught remarkably early, but he’s got the absolute best system surrounding him. From day one, he has (I will assume) a pediatric endo whose already gone through the family’s vetting and trusting process. He’s got parents who already know and understand, and don’t need nearly the amount of learning-by-experiment or learning-by-mistakes that us first-diagnosed kids went through. He’s got siblings who he loves and can relate to — and doesn’t need to spend those months, years, or decades feeling alone and disconnected like many other T1Ds have. He’s got a mom who’s connected to hundreds of people affected by diabetes across the world, and can benefit from everything that brings. His attitude is wonderful — he understands what he’s up against and isn’t afraid to vocalize his concerns. Plus, he’s got a great smile in every one of those pictures.

    So while I’m sorry you are now a Mom of 3 T1s, the T1 is lucky to be one of Mom’s 3.

    • Christina says:

      Thanks Scott. As always you share wonderful thoughts. You are also correct as usual – my kids are my strength. I assure you I wasn’t this strong at their ages or even before the first was diagnosed.
      Middles does have a great support system already in place and perhaps this will bring all the kids closer. Middles is just that – the middle kid – (I did not choose his blog name – he did) he has told me in the past how he sometimes has felt left out or forgotten. I think that is common for middle kids. I know I felt like that growing up. I hope they will all band together and be a force to be reckoned with.

      As far as the DOC – my connection to the wide world of diabetes – it is a second source of strength and I don’t know where I would be without everyone.
      Thank you for all your kindness and support – on here an in the past when we had chatted about all of this.

  21. Colleen says:

    Yup, it sucks. He will be fine. In fact, he’ll be great.
    Hugs…

  22. Stacy says:

    I’m so sorry Christina. It’s absolute suckage but with you as his mama and such and amazing attitude he will be fine

  23. Hallie says:

    ((Hugs)). This made me cry. You can do this! You are doing this! And you will ROCK IT!!! It’s not cool. It’s not fair. And I’m so very sorry. Sending you many hugs and lots of love!

  24. Misty says:

    Christina this all seems so unbelievably unfair. Thank you for sharing your story and thank you for sharing your amazing children. They are all lucky to have you!

  25. Leslie says:

    My heart is breaking. I am so sorry about Middle’s diagnosis, but happy he has such a powerful great Mom to care for him. He is a lucky boy!

    • Christina says:

      We will all be just fine Leslie. I am thankful my kids are so strong and tonight watching Sugarboy help Middles look back at his meter to find out what his BS was after it timed out both broke my heart and warmed it.

  26. Debbie says:

    I love that Middles! He is such a caring sweet boy. I don\’t know what to say except that I am so sorry and I love you guys!

  27. Kate says:

    Oh Tina. Total suckage. After my initial sadness and tears in my eyes upon reading this, I realized just how lucky Middles is to be a member of this family. He will be fine. You will be fine. He has awesome examples to follow and a mother who rocks her kids\’ care every single day. Sending hugs and any support I can give.

    • Christina says:

      Thank you Kate. Your words humble me. I never think I do enough and my kids likely think I do too much – hopefully some where in the middle we are getting it all right.

  28. Heidi says:

    hugs to you.You have fantastic kids(and they have an awesome momma) & Middles can see that he can do this.

    • Christina says:

      Thanks Heidi. I’m very proud and humbled by my kids daily and I don’t worry about Middles ability to rock the D thing. Of course keeping up with his meter might be a challenge.

  29. kerri says:

    I think you already know all the thoughts I’m thinking–all the initial first-reaction type things.

    Second, even though you will already know I am thinking this one: I love you. I love your family. I’ve been thinking of you guys a lot lately–despite not knowing what was happening. I look at my You Can Do This. bracelet every day . . . and when I do I’ll be sending good things vibes to you and your family.

    Because I can never refrain from repeating myself: I love you. [And dude I so need to get back to the Bay Area so I can meet your awesome kids.]

  30. Alecia says:

    I can’t believe I’m just reading this now, as I try to catch-up on posts. Please know I am sending you tons of love and support. As a PWD and fellow JDRF Walk teamer (not sure if that’s a word), your children are SO lucky to have you Christine and they are lucky to have each other. You describe them as strong, clearly they have learned a lesson from you. And yes, it is you telling your story, and countess other people who have a T1D story to tell which is exactly why we walk! I will wave up to you and your Stick With It Sugar teammates from the Brooklyn Bridge! Much Love! xo

    • Christina says:

      Oh how I would love to walk on the Brooklyn Bridge one day. Is that really where your walk is? how fun. Thank you for all your kindness and support Alecia. I hope we kick some great D butt this year with our walk and you too.

  31. Sara says:

    I am proud of you for finally finishing this post and I can’t wait to see all of you next month!

  32. Lyn says:

    My heart aches for your family at having to deal with another diagosis. I’ve been keeping you all in my prayers & will continue to do so. Sending you so many hugs and so much love!

  33. I just read this. I am so sorry. To be perfectly honest, I am too chicken shit to have a second OGTT performed on Livie…she already failed the first. We just ran a blood panel on her to check on her A1C, C-Peptide & Autoantibodies and I continue to check her at home. You are a brave Momma. FFL 2014?

    • Christina says:

      Im sorry to hear about the first test. It doesn’t mean she would fail again and sounds like you are doing everything right to keep her safe. It never gets easier but we do get better and so do our kids. as far as FFL this year – its really up in the air. We move from CA to WA in 4 weeks. Moving is expensive and might mean no vacations this year. Still looking into it. If I don’t make it this year I will be there in 2015 for sure. I hate missing it. Hugs to you and your family and thanks for stopping in and commenting.

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