Saturday, May 21, 2011

and then life suddenly changed……

 

My first born.  The first child I have made all the mistakes on.  The first pancake, the first crepe, the first experiment.  My first born.  My first love, my first joy, my first everything.  My son.  My whole life.  My legacy.  My world.

Life as we know it changed last week for our family.  Alexander was diagnosed with Type 1 Diabetes.  A bolt of lightning struck our family and we were completely unaware there was a thunderstorm happening.  I have never been struck by lightning, but I can say that’s pretty much what the news felt like. 

There were no signs.  Just a moan.  “Can you take me to the doctors Mom?”  “What’s up Bubba?”  “It just tingles a little bit.”  “Sure thing Bub.”  So we went.  He did his job and we waited.  Diabetes was the next word I heard.  Then I heard him crying. 

We spent the night in the hospital.  Nurses, doctors, nurse assistants, lab technicians and hospital admitting came in to poke and prod at my son.  Each one telling him that everything would be okay.  Each one telling him that this will be a part of every day life now.  Each one telling an eleven year old that his life won’t ever be the same. 

Alexander kept a good face.  He put on the charm and wowed the staff with his brilliant wit and sense of humor.  He answered their questions and endured their pokes.  Only when they left the room did his eyes show their fear and his body showed it’s weariness.  His ears were hearing the words, INJECTION, CARBOHYDRATE COUNTING, BLOOD SUGAR LEVELS, and DIABETES EDUCATION over and over.  Words that will be a part of every day and night for the rest of his life.

So what do we do?  We go on.  We have to.  We change everything we know about eating.  We change everything about our lives and our schedule.  We poke and check and recheck.  We add and divide grams of carbohydrates and units of insulin.    We learn from the teachers and we become the teachers.  Parent, confidant, best friend, disciplinarian, and now diabetic educator.  We teach the grandparents. We teach the friends and the parents of friends. We teach the school.  We teach the brother and the sister who want to know why brother doesn’t act or feel sick all the time yet he needs four shots a day.  We teach everybody who will stand in the light that radiates from my son.

It will get better.  There are new things being discovered all the time.  There may be a cure for Type 1 diabetes in Alex’s lifetime.  He will live to be one hundred and ten so if it happens sooner than later, it would be a blessing.  There may be an insulin pump in the future and more classes to take as a result.  There will be decisions made on sleepovers and pizza parties that will make more than one of us sad.  For right now and for the next few months normalcy is not in our vocabulary.  We will live our lives one blood sugar at a time, knowing that each time will be more normal than the last. 

 

Thank you to all the well-wishers and beautiful souls who have kept a special thought in their hearts for our family.  The blog will return soon, I promise.  I am going to be including the carbohydrate grams with each recipe I post.  Since I have to figure them out, I might as well share them. 

 

2011-05-21 15.32.22

 

Thank- you again,

Always,

Sara

18 comments:

  1. Oh, Sara, I am so sorry. As someone who was thunderstruck to be diagnosed with diabetes herself, I get it. I think it would be 10 times harder if it was one of my kids, instead of me.

    The good news is...it is manageable. It's not easy getting used to it, not easy at all. But it's manageable, once you get the hang of it.

    If you need any support, ideas, a shoulder to cry on, please don't hesitate to email me, or contact me through my blog.

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  2. The Diabetes Online Community is one of those groups for whose membership we hate to find someone has qualified; nevertheless, we welcome all with open arms as we search for better therapies and (ultimately) a cure.

    When you find yourself ready to reach out and be enfolded amongst us, look to sites such as Diabetes Mine, Children With Diabetes, and dLife, and look for "d-Parent" blogs to point you in the direction of what is becoming your "new normal".

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  3. Sara, I wish you all the strength you and your family need to go through this rough time. I am sure things will get better, as you say. I can barely imagine how hard it must be on a young boy. But it is also true that there are now many more resources to adjust life to these events. I wish you and your boy all the best! You are in my thoughts!

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  4. Sara, I am sending you and your family my best wishes. This must be such a shock for your son, but you are right that he will find the strength to deal with this new part of his life. I too pray that there is a cure for this disease in the near future.

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  5. Sara, I will pray for you and your family. I honestly think they will find a cure in your sons lifetime. We have to have faith. It is no longer the death sentence it used to be. If he keeps it in check and takes care of himself he should live a very long and prosperous life.

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  6. My husband has lived with type one diabetes for the last 24 years. He actually got it when he was 21 years old. The good news is that if your son takes care of it, he can live a really normal life. I have to imagine that this was quite a shock for you, him and your entire family. My thoughts are with you and your family during this time of change and transistion.

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  7. A terrible story, beautifully put. You know how I have a special place in my heart for your family. Alex can't have a better support system in place. You're in my prayers.

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  8. I work in the diabetes industry and echo the comments from Brenda above to check out the online communities for children with diabetes. Just don't get overwhelmed too soon. If you have any issues with school, the American Diabetes Association has advocates to help with that. Good luck. There are lots of people who can help.

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  9. He is one brave young man, and with a mom like you, he might end up being the one to discover the cure! Best of luck - he's such a sweetie (gotta love that t-shirt!)

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  10. Bless you and your dear son! Keep the Faith... it will get easier. One on my dearest friends was diagnosed as a type I Diabetes at age 9 and he is living a wonderfully "normal" life as a 46 year old happy father. Be good to yourselves during this time of adjustment!

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  11. Sara, I'm so sorry about this recent diagnosis...I know how deeply we hurt when our children hurt. You WILL adjust to this new lifestyle, but it can be overwhelming at first. I'll keep your family in my prayers...

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  12. Sara, very touched by this story. It is difficult to watch our children be faced with health challanges. I understand.
    That said, there is a lot of support and knowledge to tap into. Carolyn mentioned above shares her recipes adapted for a diabetic diet. It amazes me how much she bakes :) Her blog: All Day I Dream About Food.
    Just heard ads on TV and Radio for the Hope of finding a cure for Type I Diabetes, Mary Tyler Moore is the spokesperson for the cause.
    Hope you and your son network with others and find lots of support. You are not alone!!!

    The Souper

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  13. Thank-you all for your words of encouragement and hope. I know each day will get easier. I am looking into all the organizations everyone has mentioned. There will be a walk near us in September for the Juvenile Diabetes Foundation that we will be a part of. All of Alex's doctors and nurse are kind and caring just as all of you are.
    It is nice to know that we are supported by friends from all over. It makes me feel like you are right here with me. Again thank-you all. I am stretching my arms around everyone of you for a big hug.

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  14. The beautiful thing about life, is that everyone's is different. Normal does not exist in a world where no two people are the same. Good things aren't good without the bad, and bad things aren't bad without the perception that they are negative. While diabetes adds difficulty to life, it is just a label that someone put on a condition. The condition adds a challenge that without a doubt can be overcome with support and love from those around, and love that come from within the individual for himself.
    For every negative, there is a positive, and one of the positives in this situation is seeing beauty and value that you have for your phenomenal family. Life isn't about how simple it is to get through, it is about how simple it is to find love. And it clearer than glass, that the love you have for your son and your family is more than powerful enough to handle this situation.

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  15. Oh Sara, your son sounds like an incredible young man. To have taken this news and keeping his head held high and his spirits up is amazing. For you to show such strength in front of him is a model that he will follow all his life. I'm so, so sorry that you've had to face this disease in your child. So sorry.

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  16. My beautiful daughter was diagnosed at 13, is now 41 and in good health. She graduated college Magna Cum Laude while working full time. She became vice president of the company I had worked for for twenty years in only 13 years, being the youngest data center manager in the company. She married a great guy and has a great life. All things are possible - good luck.

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  17. Sara, why didn't I know about your blog sooner? Thanks for posting on facebook. This is wonderful and I will follow. Do you mind if I post some of your articles on my website? It is about caregiving and this is great information that will help a lot of people. I haven't seen you guys in such a long time and I am ashamed of myself! Love you all, Aunt Sunday

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  18. Thank you Aunt Sunday. I miss you too. Thank you lovely comments. Of course you can share my articles. I am trying really hard to get the word out about my blog. It is my baby. I hope to see you soon! Stay tuned for more!

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