Back to ground zero

[Toosoon2.0]

On Monday I took my delightful daughter, the love of my life, in for her annual 11 year old appointment with the pediatrician.  I knew she was underweight but she'd grown four or five inches in a few months and I figured it was all just going to sort itself out, level out, over time.  We talked about how to bulk her up with healthy fats before her swim team season started again this summer.  Then she told the Dr. that she sometimes felt pain when she urinated so he said, since you're here, let's just do a urine sample to rule out a UTI.  Next thing I know, we are speeding to the ER with a now confirmed diagnosis of Type 1 Diabetes.  We're still in the hospital - the same one where I got my husband's brain cancer diagnosis, the same one where I roamed the halls asking what in the hell happened to my life.  We've been here for four days.  Andy is in Europe.  I haven't slept.  I've learned how to do everything I need to do to check her glucose, inject her insulin, count her carbs yet because her body is still not purging all of the sugars we are still there. I am gutted you guys.  Why couldn't it have been me?  Why, why, why, why why?  How is this f***ing happening?  I am ready to face the challenge but after four days and three sleepless nights (and facing who knows how many more), I just needed to come here and unload.  The kid who had all of the breastmilk and none of the processed foods.  None of it mattered.  No history of diabetes in any of the four branches of her genetic family.  I know she can and will live a full life but I am absolutely gutted.  Thanks for listening.  I feel like the world is again falling apart around  me and the universe is asking me to move mountains, hold my head high, put on a good face, etc. etc. etc.  But that's a big ask.  My poor little girl.  This is total sleep deprived stream of consciousness but I'm not getting a lot of support from the people here who know what's going on, the long weekend is starting tomorrow and I feel very much alone.  And by the way,  WTF health care in this country?

[Julester3]

The good news, it was caught and you can now manage it. I'm sorry you are dealing with this alone at the hospital and no support is available nearby. It's is a long weekend coming up and  hopefully you can go home and rest. Hugs for you! 

[sudnlysngl]

I'm so sorry toosoon. I'm praying for you and your daughter. It sucks that you both are being handed this.

 

I wish I could give you a hug and tell you it will be ok.

 

Again, I'm truly sorry that your having to have this be part of your life and deal with it alone. Come here and vent with us, we are here for you.... (((hugs)))

[cathyr]

I'm so sorry to read this TooSoon.  Sometimes life piles on more than we think we can handle, especially when we have to face big life changes alone.   Although the news is devastating and a huge blow, I'm glad it was caught before it could jeopardize your daughter's health further.

 

Sending heartfelt prayers for strength and peace for you and your sweet daughter.

[Sugarbell]

Stay strong..for both of you. 

 

And yes yes it’s good news it was caught early..but I’m sure you’ve been so worried about her. Hang in there strong Mama!

[rifatheroffour]

I have two good friends who have kids with the same diagnosis. One has been diabetic since she was 6 or 7 and she is one of my daughter's closest friends, they are 16 now. The other is now a sophomore in college who was diagnosed at 14. Yes this completely sucks and no we don't need more crap to dump on our challenged lives. I can agree with you, health care will be a challenge that you will have to manage closely and advocate for, which I know you are certainly skilled at. 

 

While i can not truly comprehend what you are going through what I really want to tell you is that both of these kids are now self monitored but with back up texting from their devices that go to thier parents so they can be somewhat comfortable. They both lead full and active lives doing all the same things their friends do and sometimes even more. I know this brings more challenges that you do not need but we are here for you. I'm sure either of my friends would be willing to offer any advice should you be interested, feel free to contact me. 

[trying2breathe]

So sorry that you're dealing with this.  Big big hugs to you ~

[Trying]

Life is definitely not fair!  I am so sorry your daughter has to live with this awful disease and my heart is with you as a mom.  With my sons IBD and incurable liver disease I can totally relate to the "why couldn't it be me"  feeling.  We do everything we can to protect our kids and keep them healthy and something like this happens that we have no control over.  

 

When the the dust settles and she is home from the hospital I hope you are able to connect with other moms of kids with the same diagnosis.  It was so helpful to me in the beginning for practical advice and emotional support sort of like this group here.  

 

I know the last last thing you feel right now is "strong" and putting on a brace face for your daughter is taking every ounce of energy in you.  Give yourself the moments you need to break down, take any little bit of support you can from those around you and trust that your fierce maternal love will give you the strength you need when you feel you have none left.  Drink water, eat something and try to get some sleep.  One day, one Hour, one minute at a time.

[Abitlost]

I am so sorry for you and your daughter, Toosoon. You will learn all you can to manage the disease and you will gain control over it. Hang in there.

 

abl

[twin_mom]

This sucks for both of you. I'm sorry. 

 

 yes, you'll get through this and she'll learn what she needs to learn to be able to live with it. And she'll go on to have a full and happy and active life. But it still sucks right here today.

[quovadis]

Oh, TooSoon. As M's Mom and health advocate/caregiver, please take care of yourself, as well.

((hugs))

[Captains wife]

That's very scary TooSoon - I'm so sorry to hear that you two are going through this. You are one strong woman and your daughter is lucky to have you to help her through this. 

[beth_krkswidow]

So sorry,  TooSoon, that you are having to deal with this where you are having to deal with it. Sending hugs your way

[TheWidowWhisperer]

Keep venting, it's a lot to deal with (the hospital, the diagnosis...). She will be fine as will you. But getting out all the sad, the WHYs and the fear is good. Sending positive thoughts.

[Virgo]

I'm sorry you're going through this. 11 is so young to have to deal with a life changing diagnosis. I'm sure it was hard being in the same hospital too. Hugs to you!

[Toosoon2.0]

Hi All - I wanted to come back and thank you for all of your supportive comments above.  Nearly two months have passed and I neglected to do that and for that I am sorry.  We're getting a handle on things now but it still sucks and it will always suck.  But thank you all for your support in those scary scary first triggering days.  We work with refugees and one of them has become like an adopted son in our family.  When I told him about the diagnosis (he stays with us a lot of the time), he first couldn't believe it - totally incredulous - but once I convinced him that yes, healthy kids can get diabetes, he said, "Life is hard, Christina."  Coming from a refugee, I couldn't help but recalibrate again and remember that we are fortunate in so many ways, in spite of how hard life sometimes seems.  Thank you all.