Not a Second Child Diagnosed?….What Would I Do?

diagnosisThis question is asked by so many parents who have a child with diabetes.  I asked it often and knew that because of my loyalty to the things that I have dedicated my life in the diabetes world after Kaitlyn’s diagnosis in 1992; that there was no way on earth that God, fate, or whatever one believes in would ever allow diabetes it to impact our lives yet again.

We were owed that, right?

Wrong.

The biggest lesson I learned on March 20th, 2009 is that diabetes just does not care what we do, or who we are, or who we are not; it comes with a vengeance.  It comes on strong, and it does not care.  Rob was diagnosed at age thirteen, and to make matters worse it was four days after my dad died.  That week sucked.

Since 1992, we never lived our life in the fear of diabetes hitting us again.  We went and had the testing done on our other kids and actually when Rob was younger it came back that we had nothing to worry about.  But also, either we were not told, or we did not hear, that he needed to be tested every year.  THAT we did not do so we were not aware.  It was our job to know and we did not and we take the blame for that, no one else.

When it happened.
Rob told us he was peeing a lot and when asked how much he told me four times an hour for the last 36 hours.  THAT was a lot.  And long story, short; he was diagnosed.

The anger that raged within us was huge.  As Jill so aptly stated about our anger; “It is just so unfair that another childhood would be stolen.”  But as in the first time; the anger was to be channelled into action.  To be honest, the anger is still there.  Not because we ‘deserved’ anything but because no one deserves having another child with diabetes.

All of a sudden I became very interested in those people who had three children diagnosed.  VERY INTERESTED.  I knew right away that I would never assume anything again, because as I stated; diabetes does not care.

A huge lesson to share with you is that even if it does happen; the truth is we are already very good at this, aren’t we?   I mean aside from all of the ‘stuff’ that plays games with our head; we are experts at dealing with insurance companies, the school, play dates, daily management, and almost everything else that comes along living with diabetes.  The learning curve for us was being diagnosed smack in the middle of adolescence.

The conversation Rob and I had (which will remain with just us) are conversations that I cherished.  Richard Rubin (and others) taught me well how to become a partner with my son.  Clearly I could have done things better but we crossed many a-bridge together that we did not even know we crossed until we crossed them and we did it as a family.

We continued onward.

There is no reason to live in the fear of an additional child becoming diagnosed because you cannot do anything about it; but you can do something should it ever happen.  I hated having one with diabetes, I hated having two with diabetes.  But it’s what we do when it lands that maps our course.  And laying down for diabetes is just not an option…..ever!

When I read about the struggles people are having with a child with diabetes (and not to belittle that–it all is horrendous) I long to have those days back when there was only one……..but I do not take too much solace in that thought because I know somewhere there are those with three, and even four…..so having two is not so bad; relatively speaking.  Not to mention those that have lost their child as well; I cannot even imagine THAT horror.

So even as bad as it seems sometimes, the question that needs to be asked is how bad do we really have it?  A question to remind ourselves daily.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

0 thoughts on “Not a Second Child Diagnosed?….What Would I Do?

  • hi I enjoyed reading ur post I know my self whats it is like to have 2 kids that are t1 diabetic my 12 yr old was diagnosed at 6 yrs old a wk before xmas. And my youngest was diagnosed last Janurary at 4 and half. 2 days after she got of hospital my gran died so it was a tough for me..

  • I can honestly say that I was COMPLETELY horrified and knocked to my knees (literally) when my baby, my 2 year old was my 2nd child to be diagnosed with diabetes. The incredible exhaustion of having 2 kids with diabetes. Giving 14 or more shots per day. The extreme sadness and depression that followed and continues to this day. It’s been nearly 3 years since our second child was diagnosed and I’m not much better. A part of me died that day and I can’t regain that part of myself – I don’t know how. I’m very involved in the DOC and camps. I even started a playgroup for little ones with T1D. None of it eases the pain I feel.

    • I feel for you, I really do. That’s all I can say. We have one with D and it has been a huge challenge for us as a family, I am not sure we could take it hitting us again. But we would have to, as you do. Best wishes.

    • As I stated, the anger (and/or pain) is still there. I understand exactly what you mean. We go forward. I wish I could make it go away for all of us….but no words can do that. We keep on keeping on…….because the lesser option sucks more than what we have. THANK YOU SO MUCH for sharing your thoughts.

  • Tom….you know my story…not one of my children was spared….all 3 boys…Dx at TOTALLY different times in their lives…16 months, 20 years and 10 years. God doesn’t give us anything we can’t handle, right? Right? But we all fight the good fight…and do what our children need. You’re one of the best, hardest fighters I know!!! Love Ya!!!

  • I admit I was very angry when my second was diagnosed…for two days…then I met a couple in the kitchenette tower of the hospital late at night. They had a two year who had started chemo that day for stage 4 cancer. I know that they were put in my path. I knew we would be going home the next day. I knew with management we could do this. I went back to my daughter who was sleeping and knew that even though I had two kids with Type 1 diabetes, we would be ok. I took the diagnosis of a second child as we are suppose to do great things for diabetes and the finding of a cure.

    • When our youngest was Dx the only bed they had available at Inova Fairfax was in the pediatric oncology ward. It was the reality check we needed….it was as though God was telling us…”this is your path, it’s not so tough…” And we have taken all three dx’s in stride…a stride on the path God put us on.

  • I’m a new reader to your blog and am really grateful for your contribution to the online diabetes community. I’m sorry that your family has been hit so hard by diabetes.

    Just out of curiosity, when you say that your other children were tested back in ’92, to which tests are you referring? Antibodies? Some sort of genetic testing? I’m wondering what they offered to you “back then.”

    I would be lying if I said I never worry that my son will develop diabetes as well–try as I might not to. It will always be there in background, and I’m sure that each time he has a virus, I will wonder if this is the one that could possibly trigger an autoimmune response. I am very curious about both kids’ (and my and my husband’s) genotypes, but it’s just not worth it to make either child get an extra blood draw. You are absolutely right that there are many worse things than diabetes–as difficult as it is–and that given the lack of preventive measures, living in fear is not helpful.

    • Auto-antibody was one—and it was not in ’92—it was a bit later. We hesitated for some time because there was no way to stop it if we found out otherwise….but we did. Trial Net is a crucial compnent in the world today. Look into it.

  • I think for me the third child diagnosed was more with resignation then anger. Am I angry? Sure but at what? The fates, my genetic makeup? My husbands genes? I would rather have the children I have then spend my time in anger.

  • Denise Leitch says:

    Dear Diabetes Dad.
    I remember when my daughter (now 17) was diagnosed at 12 yo, myself being a person with Type I diabetes, was devastated to think that my child would now live like I have for so many years. To my surprise, when I told family and friends the news, the general comment was “thank God you didn’t say that her Cancer was back, whew!” This same daughter was diagnosed with stage III Cancer at the age of 6 months, went through surgery and chemotherapy. She is now Cancer free and had been for 17 years. Doubtful that her Cancer will ever recur but her diabetes is a possible side effect of chemotherapy as mu Diabetes was medication induced as well.. What was I thinking! I personally live quite well with my diabetes and my daughter will as well. I cannot imagine having a toddler or an infant with Diabetes, but then I never thought I would have an infant with Cancer. Diabetes is how we look at it, remain positive and stop all this pity party drama. Yes, this is tough, at this time it is not curable, but it is livable and when I look at my daughter, I thank God for that. There are some children that do not get through this and that makes me sad but feeling sorry for ourselves does not make it any easier, carry on, for the love of God, your children are your children whether they have any issue or not. Surround yourself with positive and that is what you will be.

  • Thank you for this post and thanks for all the comments. I just came across this and I had to read it, cause is funny that just yesterday afternoon I decided to test my second child (17 mo.) because he has been drinking too much water and wetting his diapers a lot, and my first was diagnosed at 16 mo. four years ago. So, for a few months now I’ve been living in fear that the story may repeat. Not that there is reason for it, but then again there was no reason for my daughter to have T1D either. He was 102 post meal, I know this is ok, and still I stared at the number realizing that it was not enough to calm me… I know you understand, better than anyone. So is good to hear from your experiences.

  • Cathy Ohlson says:

    As of this past Sunday, my family joined the ranks of multiple diabetic children. (In this case, I am the grandmom and it is my daughter’s kids who have been diagnosed.) My second grandson who is 5 – and getting ready to start kindergarten this year – was diagnosed at 19 months. Sunday night his 8 year old brother began urinating a lot – four times per hour. As they have done countless times before, my daughter and her husband tested him. The only difference this time was that his blood sugar was 500! A call to the doctor and they were off to the ER where he was tested, started on insulin and admitted. Due to my daughter and son-in-law’s diabetic eagle eye, my 8 year old grandson wasn’t throwing any ketones and never for a moment seemed sick. His younger brother had gotten so ill before diabetes had entered our family and before we lived on high alert for any signs. There are two younger children in the family, as well, and you have to know what we are wondering….

    • Thank you for sharing and am sorry you have joined but am glad it was caught ‘in time’ (whatever that means). Grandparents are part of my favorites in all teh family goes through…..you feel it so hard, want to help, and many times are not allowed. I hope this is not the case as you sound so caring. Good luck and you are all in my thoughts and prayers.

  • My granddaughter was dx’d on March 6th, 2012; two weeks before she had turned 4 years old. Two weeks later (on the 20th) my 2 1/2 year old grandson awakens me… his diaper is soaked, he is insatiably thirsty, and nothing would appeased him. After randomly checking his BG for two weeks, for all to seem normal… I decided to check him. I was so new to diabetes that when the meter read “High”, I had to grab the manual. His BG was over 500. ER visit confirmed his diagnosis. I am now in FL while my husband resides at our home in GA, so I can take care of the “Diabetic Duo”. Love ’em!

  • I know I was in shock when our second and youngest was diagnosed but I think it was harder on our first child. He was 6 and only had it for nine months. I think he thought it was his fault or just felt sad for his brother knowing what this disease was like. As a parent I didn’t have time to feel much while working to keep the boys healthy and stable. It did create equality between both boys doing all the diabetes tasks and now 13 years later they do have a bond I’m not sure would have been there otherwise.

  • Kristina wright says:

    Hello,
    Your article was very interesting to read. In fact I could have written it. Last March our fourth child was diagnosed with type one diabetes. The anger within me was crippling. But life goes on and I do my best not to let my children see my feelings.
    Take care,
    Kristina

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