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Author Topic: Could this happen to me again?  (Read 9621 times)

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Offline Chris

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Could this happen to me again?
« on: July 24, 2010, 01:14:28 PM »
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  • Hello friends- this is the post I mentioned in the newsletter. This is for those of you who are either new to diabetes or maybe someone now expecting another child since diagnosis. With some recent second family diagnosis, people are getting concerned that maybe they could be next. So I asked some of the families that I could think of off the top my head at 3am(thats when I usually do the newsletter) to share their experiences. Of course, if you didn't get the memo(sorry) and do have more than one child, please feel free to add to this thread.

    Anyway, here's my entry. Some of you probably weren't aware that Kellie was pregnant with Emily when Christopher was diagnosed. Initially, we did have concerns that everyone has. What are the chances? What tests can we do? etc. But for the most part, I think dealing with our new life was overwhelming enough, why worry about something thats not here yet or may never come? I think some of it was also the timing- It was summer, we had a few months to learn this then it was fall and Christopher was starting Preschool so there were concerns there. Then we were focused on fundraising for the walk and then the holidays came and Emily was on her way and arrived just after New Years.

    So now with Emily here, we had the option to do the tests but we thought- honestly, whats the point? We get the positive reading and suddenly we are walking on eggshells worried about not letting what Christopher go through happen to Emily, which was basically the typical Dx everyone has pretty much dealt with too. Or what if it says negative now and then suddenly they turn up? But even with a positive reading, is there something we can give her to prevent this? Something we can make her do? Change a habit? Anything? We all know this isn't the case...... diabetes answers to no one. If it happens, its gonna happen whether we like it or not. Why waste our precious time worrying about something we have no control over? We have Christopher to worry about for that and now this beautiful healthy baby girl.

    But sadly, from the day she was born, I knew deep down Emily would in fact be next.  And yes we did worry, we did check when something didnt seem right. Its natural for a parent to think that way. It just didnt run our lives- its bad enough it was already doing that. Maybe the gut feeling would help me deal with everything if it happened (remember that one later). Ya know, take the shock away.

    Originally, I really thought we had 4 years of not worrying about this. Figured if Christopher was 4 then Emily would be too. Now this was before we had ever met anyone else with D to know that kids)and adults) can get it anytime. This was before T1P and before our old home at the ADA where there were families that had more than one.

    Turns out, I was kinda right. Emily was about 3 and a half when I came from work greeted with Kellie saying, "We're going to the hospital, she's 461".  If ya figure, we caught Emily VERY early and Christopher was very late, you could say had we not known what to do, she couldve been walking around for 6 months with battle in her body and put it right after her 4th Birthday too. Of course, Diabetes doesnt work that way. We just got lucky in a way...I guess. Who knows- at this point I don't even care right now because my lil baby girl is now just like her brother. Which truly sucks. And when the first thing out of her mouth was "I want a pump too" a calm came with the feeling it was gonna be OK. Emily, even at her young age, understood what was going on.

    So remember that part that I said to remember later? Ya know where knowing deep down would help me cope. DOESN'T WORK at least not feel me. I still had this feeling of shock and sadness. I even had a feeling of failure that somehow I let this happen to my kids. That something was wrong with me that I had 2 kids and both had this awful disease. (I guess what helped initially was knowing we were done at 2 even before D kinda helped....at least with the 2 for 2 thing). But I still was angry- how could this happen again. Why us? Why not someone else?

    Shortly after that we had posted here about Emily. Of course the support here was great. Its odd the second time around. Well not like we got it the first time(since there was no T1P) but it was much different....much more calming. Maybe it was the people or maybe we got over the whole thing and figured "We already know this stuff". (It was probably both). So the how could this happen and why us? was replaced with- Why not us? and Its better that its us and not someone getting blindsided. Emily is strong and intelligent and can handle this......so then so can Kellie and I.

    And sure it sucks. Having an understanding already helps but then there's other pitfalls. Dealing with a high AND a low at the same time. Making sure the kids have all their double supplies (because we had to get a different pump for Emily- lol) Just when ya finally caught a break with one, the other has issues.....ya know basically everything DOUBLED.

    But we dealt with this before and continue to do so. We are still VERY LUCKY both kids wake up every morning in their own beds. They can do anything any other kid can do. Sure they have this thing that people will never truly get until they walk in our(and everyone here) shoes but thats life. You roll with the punches and while ya keep getting knocked down.......YOU HAVE TO GET UP! Thats how you learn, thats how you adapt and thats how you overcome.......and one day we will overcome!

    Hope this helps..... and hope to hear from the others..............
    « Last Edit: July 25, 2010, 03:06:49 AM by Chris »
    Chris
    -Daddy to Emily (9) dx 6/24/08 and Christopher (14) dx 7/25/04 and Ava


    Offline rudi

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    Re: Could this happen to me again?
    « Reply #1 on: July 24, 2010, 06:01:10 PM »
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  • Thanks for posting this, Chris.  I didn't realize that Kellie was pregnant with Emily when Chris was diagnosed.  I remember reading something about playing by a creek or something, remembering his blonde hair, then being in emerg with a new diagnosis the next day.  I think the blonde hair made me assume Emily was there, too.  That was a hell of a lot for you two to be handling when expecting!  I will post our general experiences and the emotions that came along with them later.  I think it might take a little time to write- be therapy of a sort seeing as I haven't thought about it from the emotional perspective.  Who has time?  LOL  I think this thread will be a great resource for those that, sadly, are bound to follow in our footsteps down the road.

    Cheers!
    Mum to Jasper, 14 and D-free, Zephyr, 12 and diagnosed Jan 29 2009, and Willow, 10 and diagnosed Jan 12, 2008. Wife and pest to Kevin since 2000.

    Offline house216

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    Re: Could this happen to me again?
    « Reply #2 on: July 24, 2010, 08:37:51 PM »
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  • I worry all the time about my second child being DX, lately he seems to be drinking alot.  He hasn't peed in the bed so I have not checked him.  But it is in the back of my head constantly   . . . I agree, with what you posted, I never will say that i could never do 2 kids with d, because really you just don't know.  I just say, GOD i hope i don't have to deal with another DX, cuz everything about the disease drives me insane.  Nicholas A1C a year ago was 5.9.  Endo thought it was fine, I found it to be a bit borderline  . . So I really don't know what the future holds.

    Janette and I were discussing this exact topic last night.  We were both asking each other what was Emily's A1C at DX?
    Lucas, 8 yrs. old, DX, 5/10/07, Nicholas, 6 yrs. old, non-d
    South Florida

    Offline andrea

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    Re: Could this happen to me again?
    « Reply #3 on: July 24, 2010, 09:01:43 PM »
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  • I worried a lot in the beginning that Katy would be dx'd... I studied statistics, anything I could get with my search engine... but as time went on and I processed the grief, but 2 1/2 years later I don't worry about it anymore, doen't even cross my mind... we've all been TrialNet tested, not because we wanted to know for her, but to help out somehow in the studies and it was a little something we could do...

    definately don't ever want to walk in the shoes of multiples with d category... but I don't stress over it anymore, because if we do join that club, I know 1. I am in a much better place knowledge wise to deal with it and 2. I have this place...
    « Last Edit: July 24, 2010, 09:03:54 PM by andrea »

    Mom to Annelies, 14 (Dx 18 Mar 08~Pumping MM Oct 08-May 12, Omnipod May 12-Aug 13. tSlim Aug 13+ ~Dexcom Oct 11), Katy, 18 (non-D) and Jory (non-D/US Navy)
    God created wine to keep Army Wives from taking over the world
    My blog

    Offline Chris

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    Re: Could this happen to me again?
    « Reply #4 on: July 25, 2010, 03:07:41 AM »
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  • Emily was 6.8
    Chris
    -Daddy to Emily (9) dx 6/24/08 and Christopher (14) dx 7/25/04 and Ava


    Offline shortstopmom

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    Re: Could this happen to me again?
    « Reply #5 on: July 25, 2010, 09:59:52 AM »
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  • Chris - I am obviously not in your shoes, but I just want to say that your post touched me immensely. Stoic old lady over here who rarely gets "something in my eye", definately has "something in my eye" this morning.  Lots of hugs to you and Kel and all of you parents who are dealing with this.  It sucks, plain and simple.  I cannot even imagine.
    Nancy
    DX March, 1971 (45 years). Pumping with "Forrest Pump" for 10 years.  Lovin' my Dexcom G4 "Lt Dan".  Mom/Stepmom of 7, grandma of 10.

    Offline gsmama

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    Re: Could this happen to me again?
    « Reply #6 on: July 25, 2010, 10:50:18 AM »
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  • Thank you Chris.
    Leslie in New Jersey: mom to ava 11 (non-d) and giovanni 13 (dx'd T1D 7/25/07 and Celiac 1/14)

    Offline MommyAngela

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    Re: Could this happen to me again?
    « Reply #7 on: July 25, 2010, 12:02:58 PM »
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  • We're not even 2 months into the 2nd dx, so I feel like we're still feeling our way out.  I hope by sharing here, though, that someone down the road can look at this and think, "We'll be okay."

    Luke's diagnosis turned our life upside down.  He was 18 months old, able to say maybe 5 words, and this disease was a complete unknown to us.  Elizabeth was only 3 1/2.  Neither remembers a time without D in our lives.

    Every milestone we passed with Luke seemed like an uphill battle.  Emotionally, I dealt with a lot of anger on top of the normal sadness.  When I saw how difficult even normal tasks like going to the grocery store were for us, it just made me fighting mad.  Getting him to accept the shots, getting him a pump, counting carbs for a toddler - all were tough.  However, Luke's mellow, happy attitude made him just take things in stride.

    Elizabeth has had many questions over the years.  Why doesn't she have D?  Where's her pump?  At one point, her favorite baby had a pump for a while.  But whereas David and I mourned the entrance of D in our life, the kids thrived, not knowing anything different.  We began to take our cues from them.  "It is what it is and we can't change it" became our motto.

    We had just settled into things pretty well when I found out I was pregnant with Isaiah.  A pregnancy that we hadn't planned.  We had decided just the week before that we were done with 2 kids. Much of that was due to Luke's extra challenges.  Pregnancy with Luke's D along for the ride.  Not a lot of sleep during that time.

    Isaiah arrived and we can't imagine our life without him now.  So different from Luke, though, from the moment he was born, he's had an opinion on everything.  He's intense, feeling emotional highs and lows deeply.  Every milestone we passed with him, D was in the back of our minds.  From 17 months through 20 months, every diaper change, every cranky day, I was watching for D.  You see, I'd never had a boy older than 18 months without D.  It seemed foreign to not have to check his BG.

    Call it parent's intuition or whatever, but Isaiah resembles Luke so much that David and I both said we wouldn't be surprised if he ended up with D.  Elizabeth is cut from a different mold than the boys, so we've always worried less about her.  When Isaiah was drinking & screaming for more, I tested him.  We caught it early, but yes, it was D.  At 26 months.  We had 8 more D free months with Isaiah.  And I am grateful for every one.

    With Isaiah's dx, I find I'm not angry anymore.  Perhaps it's just that I've learned that anger only takes from me - it takes my energy, my focus and my inner peace.  I am, however, deeply sad.  Sad that once again, we have a kid who is going to have to deal with more than the average stuff from an early age.  Do I think he can handle it?  Absolutely.  He's a fighter. 

    Whereas Luke is a kind, compassionate little soul whose D only makes him more aware of others' problems, Isaiah is a take-no-prisoners, tackle things head on sort of fellow.  I think in each case as they grow, their approach to D will be different, but serve them well.

    Never in a million years would I have thought I'd have 2 kids with a health challenge.  2 babies, really.  But they're resilient, and in our family, with the second dx, this *is* the normal.  With this shift, Elizabeth has started asking more questions about when she will get D or why she doesn't have it.  We're honest with her.  We hope she will never get it, but if she does, she will handle it well, just like her brothers.

    I think of all of the bad stuff D has brought to us, I can count a few good things, too.  We are more patient with failure, more compassionate for others going through hard times, and we have the blessing of many friends from around the world here at T1P that we wouldn't have ever known otherwise.
    Angela, Mom to Elizabeth - 13, Luke - 11, dx 9/30/2006 and Isaiah - 8, dx 6/7/2010 both pumping with T-Slims

    Offline sabrinadrh

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    Re: Could this happen to me again?
    « Reply #8 on: July 25, 2010, 05:45:52 PM »
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  • Thanks for sharing your stories.  It is touching and saddening all at once...
    Sabrina, mom to Beth(18) dx'd 3,2006--- Houston, TX

    Offline LORRI

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    Re: Could this happen to me again?
    « Reply #9 on: July 26, 2010, 08:47:44 PM »
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  • Chris & Angela your posts were amazing. I dont know if I could put my feelings from that time in words. It may take me some time but I'll try. I am not good at writing!!!




    Lorri mom to Alyssa 20, Justin 13 dx 1/03, Robin 10 dx 9/03
    Massachusetts

    Offline JoesMom

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    Re: Could this happen to me again?
    « Reply #10 on: July 26, 2010, 09:21:34 PM »
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  • You humble me.  All of you.


    Julie - Mom to Michael (28), Joe (21 - dx 1/24/07 - Omnipod), Sam (19), and Sarah (17) - and Sadie/Deeya (my Soi Dogs)
    'Colorful' Colorado

    Offline Lauren

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    Re: Could this happen to me again?
    « Reply #11 on: July 27, 2010, 10:55:56 AM »
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  • Call it parent's intuition or whatever, but Isaiah resembles Luke so much that David and I both said we wouldn't be surprised if he ended up with D. 

    This is exactly how I feel at times with Keira and Dylan. She looks so much like him that I too wonder if she will get D. I have even noticed that they both have a small beauty mark on the back of their knees (one has it on their right leg the other on their left), but it makes me wonder/worry more about Keira getting D than Aidan.

    Lauren (in NJ)--mommy to Dylan age 7 (diagnosed 12-1-06), Aidan age 5 (non-D) and Keira age 3 (non-D)
    MDI Novolog and Lantus

    Offline Dad of Sarah

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    Re: Could this happen to me again?
    « Reply #12 on: July 28, 2010, 11:27:57 AM »
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  •     I want to say that this brought me some kind of peace or comfort but I just can't. My four year old daughter Sarah was dx less than a week before my second one, Evelyn, was born. I worry everyday that somthing will happen and my little one will have to deal with this too. I have read so many posts, some amazingly brave, but I have yet to find that kind of courage. I know that this may sound a little "poor me" but the worry about not screwing up Sarah and wondering about Evie all but consumes my thoughts. It's been 5 months since the dx and the birth and I have yet to find a groove for it all. Every time I think I have somthing figured out, I get reminded of how little control I truly have. Thank God for my wife.

    Offline Chris

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    Re: Could this happen to me again?
    « Reply #13 on: July 28, 2010, 12:09:25 PM »
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  •     I want to say that this brought me some kind of peace or comfort but I just can't. My four year old daughter Sarah was dx less than a week before my second one, Evelyn, was born. I worry everyday that somthing will happen and my little one will have to deal with this too. I have read so many posts, some amazingly brave, but I have yet to find that kind of courage. I know that this may sound a little "poor me" but the worry about not screwing up Sarah and wondering about Evie all but consumes my thoughts. It's been 5 months since the dx and the birth and I have yet to find a groove for it all. Every time I think I have somthing figured out, I get reminded of how little control I truly have. Thank God for my wife.

    It may not right now, just give it time- it will. And after 6 years, its not always perfect. I occasionally get reminded and affected. It takes awhile but it can be done. Heck it took 2 years for me to write about this. Plus, I all but forgot about my daughters 2 year Dx date but last week I woke up knowing it was Christophers year 6 and reminded 11 hours later(then when we actually we in the hospital dealing with this 6 years ago). All while the kids were away for the weekend and I was enjoying a baseball game. I felt like shit because its nothing in regards to Emily but still a big deal with Christopher.
    Chris
    -Daddy to Emily (9) dx 6/24/08 and Christopher (14) dx 7/25/04 and Ava


    Offline Jana

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    Re: Could this happen to me again?
    « Reply #14 on: July 29, 2010, 08:22:37 AM »
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  • I seem to have something in my eye.

    Chris and Angela, thank you for sharing your stories. You two amaze me.
    Gabriel (9) Dxd 06/24/05
    Emma (7)



     


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