I have stood where you stood.
It’s late at night, or early morning depending how you look at it, the clock chimes 3:00 am, the blood sugar just will not rise. An hour after what you think is an endless supply of juice boxes and other ‘stuff’, the glucometer says 52; you cry.
I have stood where you stood.
You’re new at this; maybe a few months or less, maybe a year or two, or maybe even more—-you keep waiting for the water to stop crashing all around you. You go on-line, you feel even there so many know so much, and still you cannot grasp this—-you feel even inadequate and just read….who cares what you have to say.
I have stood where you stood.
No matter how hard you try, you feel your child’s A1C is a report card and a direct reflection on how much you suck at this thing called diabetes. It’s not a reflection of anything but diabetes….use it to your advantage not your behavior. It is a gauge nothing more; like a speedometer in a car tells you what to do; the A1C is the same. I know.
I have stood where you have stood.
No one REALLY understands you. Everything is in shambles. Relationships, from your spouse on down have suffered. You do not know what it is like to feel good about your self. You feel tired, ugly, useless and that you are all alone.
I have stood where you have stood.
And because I have, I can tell you that YOU can change the landscape of how you live. Read everything you can, thirst for knowledge, desire knowledge, and find knowledge. You can find the time……if you want to. This knowledge is the key for you to survive and dare I say thrive. Whatever you want to find out, you can, you should, and you will. Go to support groups. Camps with family weekends. CWD Friends for Life. Find a way. People in more dire straights have found a way also. Your situation is not as unique as you think.
You will watch as they become active in school….and…..well…..life; and achieve great things like become a Girl Scout Gold, dance at every recital, go to the store by herself, find friends, become a class officer, become a member of the homecoming court and the prom court, have a boyfriend, earn a high school letter, graduate high school, graduate college, and continue on in life………thrive in life.
It may not look like that from where you stand right now, but after almost 22 years I can tell you that YOU can control diabetes in your life, even when it is out of control–you can control what it does to you; you can decide to own it the best way you can, you can decide that anything that comes your way–you will own–in our case it was a second child diagnosed—-it killed us again……but AGAIN we owned it–as a family.
I know it seems hopeless today…….but it can get better—-it will get better—-it’s your call. I know……because I have stood where you stood.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.
9 replies on “Your Baby has T1 Diabetes……..I have Stood Where You Have Stood.”
Tom, such a beautifully written article.. I have no words..
Thank-you for this article!! The different diabetes online communities have saved me and I have finally not felt alone with “limited” patience and support from friends and relatives. My 13 year old daughter was diagnosed 3 1/2 years ago with type 1 diabetes and it does get easier and I never stop reading about the latest technology or research updates on a cure!
Amen. So powerful to just be reminded that someone else has stood in these same grooved out, worn down, footsteps.
So well said I cried a bit. Today is Jacoby’s 2 year d- versary.
celebrate how far you both have come. Celebrate Jacoby’s resilience and hos drive……celebrate your supermom cape (I know it is there—you just hide it all the time).
🙂
I have stood where you have stood. Our kids must be around the same age. Ages 19 and 21. 19 yo son dx at 13 yo, after he thought nothing else could happen to him after being born with a congenital heart defect and two open heart surgeries and one more to go. My 21 yo daughter dx at 19 mos has lived with it her entire life, and she too thought nothing else could happen to her… In fourth grade dx with ulcerative colitis. Her motto is “u never give up u keep tryin” (she actually wrote a song about it. Very proud of both of them! Just when u think that u have been dealt all u can handle… There is always more… Hang in there everyone…and never give up… Tom, you are always an inspiration and I truly look forward to all of your posts!
What wonderful words to see…..thank you so much for taking the time. Always and in all ways….more…ain’t that the truth. 🙂
Omg…thank you for writing this. I swear it was like you were sitting in my head And those were my feelings you were writing. We are 2 years into the hell of a disease and I swear sometimes it seems it gets worse not easier. I’m tired, I look like crap and I feel like crap and I’m angry at the world for not understanding me. I swear to god I feel like I’m living in another country and nobody understands me because I don’t speak the local language. My ds just turned 12 and he will do his very first sleep over at a friends house this weekend. First time ever sleeping at a friends house which means this control freak of a mom has to give up control! Not an easy task…how does one ever get through the first sleep over? Ugh…
I have said it before and I will say it again, the more our children take on, the better they will be. As hard as that may seem, start small and grow——if you cannot do it alone—-find a camp and do what ever it takes to send him……you will HAVE TO let go…..why not do it under the guise where he will be surrounded by help and friends doing the same thing. Food for thought.