Friday, June 19, 2009

Our Story

My husband grew up in a bakery. His parents came from Germany and opened a bakery in the 70’s. I got to know my husband when I got a job at his bakery when I was 18. Long story short, I married him 2 years later. We were young and blissfully happy. We weren’t married a year before I began lobbying for a baby. I convinced him with the premise that it usually takes a year or two to get pregnant, and of course, I got pregnant weeks after we began trying. Our first son, M, was born right after our second anniversary. Our second son J followed two years later.

J wasn’t 7 months old when we began to worry about his health. He was such a skinny little fellow, very clingy, and a crier. There was always this sick feeling in the back of my stomach, the motherly intuition that tells you something is wrong. I took him to the doctor a couple times, but he always checked out. In his seventh month he began waking up with diapers so wet they would literally be fallen off by the time I got to him. And he was always thirsty. Now, my older brother has Type 1 Diabetes. He was diagnosed just a couple years before, but he lived in Taiwan at the time, so I was very much removed from the entire situation. I think I probably let the idea flutter in the back of my head that J was diabetic, but he was a baby, so I quickly dismissed the possibility. We spent a month fighting thrush and various yeast infections in his diaper area. He became increasingly needy and skinny until one evening it all came to a head. He was throwing up, lethargic, and by the time we got to the emergency room, seizing. He was so dehydrated they had to call in a surgeon to find a vein to hydrate him. We almost lost J that night. I spent the entire night in the waiting rooms making deals with god. "Please save my baby." It was my pediatrician that diagnosed him the next morning. He was airlifted to San Francisco and our diabetic life began.

I was told that the chances of having another child with diabetes were 3-5%. Not that this had any bearing on our decision to have another child, but it was four years later that B was born. He was a giant baby, 10 pounds 4 oz. and a full 24 inches long. He was so easy compared to J. His first two years were only a joy as he was such a happy and content baby. Our forth son L was born two years to the day after B. L was a surprise pregnancy, not that I don’t know how it all works, just the odds of him coming to this world were a million to one and he found a way. L was 2 ½ when he woke me up one morning telling me he was thirsty. Three more times in an hour, thirsty, thirsty, and thirsty. I checked his sugar and he was 220. I called the doctor hysterical. Blood tests confirmed, only slightly, that he would be a type 1 diabetic. We caught it so early that for the next 3 months we treated him like a type 2. As long as he didn’t eat anything too sugary, his blood sugars were in range. He got strep throat and ended up in the hospital because his throat closed and he had a hard time breathing. The illness accelerated the autoimmune process and he was on insulin before we left the hospital and on an insulin pump 4 months later.

Fast forward one year when B was bugging me for a drink after a party we went to. His blood sugar was 179. Our regular endo was on vacation and the fill-in dismissed the fact that he was on the diabetic road. I checked his sugar on and off for a month, in denial, hoping I was imagining things. 95% of his blood sugars were normal. It was that 5% that indicated the inevitable. He began insulin one week before he began kindergarten and began pumping two months later.

Ryan and I were married 19 years. Our boys are 18, 16, 12 and 10. My oldest does not have diabetes. Tests indicate he is in the clear, for the next few years anyway. My husband closed the bakery six years ago and began selling bakery supplies to other bakers. He loved the job and I loved the fact that he didn’t work 12-15 hour days anymore. Through this blog I hope to relate experiences we had and help others see that there is a light at the end of the tunnel. Whatever emotional phase you are in as a loved one of a diabetic, we’ve been there. And the worry, that sits with you like an old friend, he is our friend too. We just try not to make him the life of the party. Take the ride with us.

The rest of the story:  My husband was diagnosed with Metastatic Melanoma the end of February 2012.  His leg was heavy...I made him go to the emergency room and the doctor immediately wanted to do a brain scan.  I thought the doctor was mental...he had to have a blood clot in his leg or something, right?  I'll never forget hearing the gasp from the doctor behind the emergency room curtain when he got the call with the brain scan results.  6 brain tumors, and further scans revealed tumors in his lungs and abdomen.  We spent the next six months in a bubble of faith.  Ryan was convinced that no matter what, everything was going to be ok.  If you spent five minutes with him, you would have believed too.  We prayed for a miracle every day, and sure enough we received multiple miracles along the way.  After courageously enduring hundreds of doctor appointments, and multiple treatments, Ryan passed away on September 2nd, 2012 in the arms of his family.  Even with over 100 tumors in his brain, he was Ryan until the very end.  He knew us.  He loved us.  He inspired us.  And as much as we miss him and mourn his separation from us, we know he is still around gently comforting us and letting us know that all is well.  He will forever be a strong guiding force within our family.

(Updated 01/2014)

32 comments:

  1. Oh my goodness! I can't even imagine raising 3 young children with diabetes! I have a 2 year old just dx in May of this year and her alone keeps me on my toes! You must be incredibly strong!

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  2. Welcome to the wonderful world of blogging as a D-Mommy :) My daughter is 9yrs old and was diagnosed a year ago. Glad to have ya out there!

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  3. Meri -

    I just found out about your blog today and I have been reading all of your posts with tears in my eyes. Thanks so much for sharing your story. I also have 3 kids with type 1 (seriously what are the odds?!) and it sure gets overwhelming at times. But we do what we need to do and hope and pray that there will be a cure soon. Meanwhile, I will keep reading your posts - it is comforting to know that I am not alone!

    Laura

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  4. I also have four sons, two of whom have Type 1 Diabetes - they were diagnosed this fall, exactly six weeks apart. We just had our other two sons tested as part of a research study, and are anxiously awaiting news on whether they too show the genetic markers. I am so happy that I have found your site - it makes me feel a little less alone in all of this.

    Joan

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  6. Meri: Wow. I've just stumbled across your blog through some other D-Parents' writings, and am so very glad I did. I read many D-Blogs each day, but most are adult-oriented as I myself am a 31-year-old with Type 1 since age 5. I'm in awe of your family, with three D-Boys, but look forward to following you here and seeing you around the Diabetes Online Community (DOC). Thank you for sharing your family's D-Life Adventures.

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  7. I just had another D momma point me to your site. I have 4 kids and the oldest 2 girls have D (dx'd 10 months apart). So far the littles are in the clear. I am comforted by reading your story. I love chatting with other D parents, but i always appreciate hearing what parents of other mulitple D's have to say. things are different when you have more than one!

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  8. I am reading your blog for the first time after seeing u won in all 3 categories in the DOC awards. You guys are truly remarkable! We should meet up some day soon. We live in Berkeley. Feel free to email me at manny@diabeteshf.org.

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  9. I just found your blog via a twitter link.

    Thinking back to what my mom went through after I was diagnosed type 1 almost 25 years ago . . . .

    You must be one of the strongest women alive to be raising three young, type 1 boys.

    Neither of my young sons are diabetic, but the worry is always there quietly whispering in my ear.

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  10. I was diagnosed w/ type 1 @ age 5 (in kindergarten)when no one in my family even knew what it was! I grew up in Boston w/ very good care and still am w/o complications after 33 yrs. I have 2 girls - diagnosed @ 15 months & almost 2 yrs old. I know what you are going through & was told that chances of children getting type 1 were only 1-3%.

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  11. Meri,
    Thank you for your blog and your story. Two of my children have Type 1; now age 27 and 19, they were diagnosed at 6 yrs old and 3. You express so well that having kids with diabetes keeps you on your toes 24 hours a day--and you're right, the worry (and sleep deprivation) is always with you. But so is the joy and the love--and the hope that if you can just help them stay as healthy as they can be, that some day there will be a cure for this.
    Hang in there! I look forward to following your story,
    Judy

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  12. Meri,

    Thank You Thank You for sharing your family story. I have three children and two have type 1 and our third has three of the four markers. So it is just a matter of time before he gets it too. I am so glad to hear your positive thoughts and to see how wonderful your family is. You deal with everything in such an inspirational way. Thank you for sharing your happiness and struggles and giving hope to the world.

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  13. Meri, Thank you! great blog! I have type 1 diabetes and my 8year old was diagnosed a month ago with type 1.
    look forward to following your blog. : )

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  14. i met the love of my life 7 months ago, and she is a type 1 diabetic. i am fascinated with the diabetic culture, and plan on never letting go of her!

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  15. I just came across your blog and It has brought tears to my eyes... what a strong D momma you have got to be.My son who is 12 was DX in Dec 2011 so we are getting the hang of this..I have a daughter who is 9 and she is fine so far .I pray for her that she will not get this & she has lots of anxiety now about it after seeing what all her brother has been through:(
    I love to talk to other parents of D kids like ours & read stories so this blog will be a great place for me.
    Thank YOU for sharing:)

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  16. I have been a T1 for 25 yrs and found out 5 days ago my 9 yo daughter is also T1. I am still in a bit of shock, but we are adjusting. I am finding that raising a T1 is much more challenging than being one! I have a 12 and 6 yo daughter as well. Looking forward to reading and learning from you.

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  17. Just found your blog from over at Tiny Blessings. Your story is inspiring - I am now type 2 after being GD with two of my three pregnancies, my husband is type 2 our oldest is hyper insulin we are working on weight and carb counting to the max her endo wants her to keep growing but her orth dr for her scoliosis wants her to stop growing! Our middle daughter seems headed in the same way and our son well he's skinny and always thirsty but his blood sugars are always fine when I check them. Diabetes runs in the family so it's a fine line we walk.

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  18. Your blog is amazing. I have a 6 year old T1D. Thank you for having such a way with words.. I have only just found your blog but with in the last hour I have cried and laughed thanks to you and I thank you for it.
    Also, check out the owners of Diabete-ezy in Australia.. http://diabete-ezy.com/About-Us-pg15155.html they have 5 children.. 4 are T1D and the dad is T1D as well.. very inspiring - much like yourself and your family.
    Best to you and yours..

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  19. That is quite a journey. Our oldest, 11, was diagnosed with T1 back in September. This past Tuesday our 4 year old was diagnosed. I'm sure I'll be reading a lot over here. Thanks for sharing your journey.

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  20. Oh my goodness! My heart goes out to you. My 12 year old son was just diagnosed on Nov.6,2012 which I noticed is your boys birthday. My mother was diagnosed T1D eight years ago at the age of 50 and my sister's son was diagnosed four years ago at the age of 7.Thank you for taking the time to write this blog...you are an inspiration. I'll be praying for you and your boys as you grieve your husband and father.

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    http://defeatdiabetesnow.com.au

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  22. Meri, I just ran across your blog. Your Faith has been tested I can see. My heart goes out to you and all the struggles that you have walked through. My heart broke as I read your story. I am so sorry for the loss of your husband. Really, what can anyone say to someone when the loss is so great. Just know that our loving Father is with you and will always be with you. My family's faith is being shaken as well...... My youngest son 25 years old was diagnosed with Stage 4 Hodgkin's Lymphoma back in October 2012, he is on his 5th chemo treatment. I will stand on my Jesus and trust him to get us through this. I know without HIM we would crumble under the weight of the trials. Meri, I pray that the Lord will daily be your strength as you take care of your awesome 4 boys. May you walk in the light of HIS presence, peace and goodness. Even when we don't understand why we walk through what we do, Father God is GOOD all the time! Hugs from another Christ follower/blogger sister coloritsimpledotblogspotdotcome

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  23. I can imagine how wierd this sentence is for you to read but your life is sooo beautiful from the onlooker. I can't imagine the pain you have and are suffering but you were given this life because you are strong enough to live it and living you are...even if you are on auto-pilot right now. Thank you for having the courage to share it with others who are in the same (almost the same) boat!

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  24. Meri, you are an extremelly inspirational woman, mom and wife. My heart goes out to you and your family.

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  25. Wow.. what a story! I'm a type 1 myself. I am glad to see that so many other mothers/fathers take care of their type 1s better then my parents ever did. God bless you and your children. They have a long life ahead of them -- and with help and support from a mother like you, they'll all do great! (Just remind them to have their girlfriends help support their t1d too!)
    If you'd like to read about my life & stuff with diabetes www.iamatype1diabetic.com

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  26. Just found your blog through "Death of a Pancreas". I am very inspired by you and your story. I am so sorry for the loss of your husband and your boys' father. You are amazing to be able to do what you do. Thank you for the dose of courage I received by reading your blog. I look forward to following you.

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  27. Your blog is truly amazing and inspiring! My grandfather had diabetes and your story touched my heart. Unfortunately my grandfather died from a heart attack which was from diabetes, but your story is remarkable. How do you keep up with 3 kids having diabetes? I am doing a project on diabetes right now and your information helped me a lot! Thank you for the support and courage from your blog to always look on the bright side! I look forward to reading more post.

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  28. Wow Meri you are amazing! I just found your blog through another blog I read. I'm a type 1 diabetic and was diagnosed when I was 11 years old. 19 YEARS later I'm still fighting this condition. I have a 3 year old son. Even before he was born I worried that he may be diabetic like me. He was born and he was very fit and healthy.I can't help but check his sugar now an again when he's ill. It really does worry me, but I know it's not in my hands. You really really are an amazing mother. I look forward to reading more of your posts. Stay strong xx

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  29. Hi Meri, Your blog is truly inspirational, you are so amazing, I don't know how you cope. I myself (only 14 yrs old) struggle with T1D and was told to look at blogs and sites to help. (I have depression and im often in hospital) I will defiantly follow you, it is so heartwarming to know how you cope so well.

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  30. Hello Meri I came across your blog through diabetic living and I couldn't put it down, your story is so inspirational. My husband was diagnosed with type 2 diabetes over a year ago and it was real mind blowing and I immediately got scared and didn't know what to do. We have been slowly changing our lives but I have found it so hard and been really stressed out, then I came across your article and I was in tears, it touched me really deep. Thank you for sharing your story with everyone!

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  31. Meri, you are by far an inspiration to all diabetic parents out there. I'm so, so sorry about the loss of Ryan. Like you said, he is still watching out for you all. I just found your blog, and I am so glad I did. Thank you so much for sharing your story and allowing us to be a part of your life.

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  32. I discovered diabetes this year primarily because I was not in shock, did not want this for me but then I saw that helped me a lot in many things until I created a blog to vent!!!

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