Tuesday, May 6, 2014

Trying to Breathe

Catching my Breath.

I'm trying to catch mine.
I feel often like I can't breathe right now. 

If you've missed it, 
My beautiful 4 year old was diagnosed with Type 1 Diabetes last week.

I, first want to THANK YOU for all your kind comments and emails, 
your thoughtfulness and prayers are treasures.

I have a TON of emotions and feelings right now.
I have, what I think is a strong faith.

Throw anything my way and I will still love and trust God.

But, I tell you, this feels like, like, I can't breathe.

One part of me
feels things like, 
I just don't think I can handle this
Not now God
Why does there always have to be something?
Why can't we just float through life with, 
nothing major happening?
I pray all the time, I love You Jesus, 
I go to Mass as often as I can,
I go to Adoration 
I trust You and You just give me MORE.
What is the blessing of this?
This constant worry of lows (blood sugar)
(especially overnight)
I cried all through Mass today, 
Heck, I cry all the time now.

Gosh, I sound like a selfish baby.
The other part of me says things like this
 (the first part is winning though)

At least I am not mourning the loss of a child.
At least it's not cancer, not knowing if my child will live or die
This is totally livable!
Thank You for this cross, Lord
This will not be bad for her when she's an adult
We can do this!

The blessings are
I know how to take care of her,
 having had type 1 diabetes since I was 10 myself.
I've found a plethora of Type 1 information, jokes, fun stuff, 
SUPPORT, people who "get it" on, of all places, 
 I've also been watching my own diabetes really closely 
because of her.
Since the last pregnancy, I've gotten rather lax 
with my carb counting.
Now, it is exact.  
(having no appetite helps with this too)

Add to that a husband with health issues, a child with ADD and another with a cleft lip/palate.

Seriously, this past week, 
I've had jealousy, anger and worse attitudes towards others.
(and they didn't even know it)
(except God)

A TON of emotions I tell you.

Breathe, Jamie, Breathe.

 She's doing fine.
This is what she thinks of Type 1 Diabetes!
We are testing her blood 6 times per day
 (one is a 2:30am one that she doesn't even wake up for)
And taking 4 shots.
 The hardest part (besides me worrying about overnight lows)
is getting her to eat enough carbs to cover the insulin she's taken 
before each meal.

Like (it's like this every meal) but today at lunch, 
we had eggs and toast and fruit.
She told me she was going to eat one piece of toast and 1/2 glass of milk.
(and an egg, but that's not a carb)

She ended up eating 1/4 piece of toast, and a half cup of pineapple.
(and the egg)

I made her sip her milk (1/2 cup is lot for this tiny girly)
while watching a cartoon after lunch (Robinhood)

EVERY SINGLE MEAL is like that.
She's 4
She doesn't know what she is going to eat.
And she changes her mind all the time.

She barely eats the 20 grams of carb she needs to eat to fill that 1/2 unit of insulin.

The clinic gave her this bear.
His name is Rufus, the diabetic bear.
He came with a book about a little boy diagnosed with type 1 diabetes,
and his mama sewed a bear for her son, like Rufus.
He has spots all over where he gets finger (paw) pricks and shots.
She's giving him a shot in this picture.
What a cool thing to give to new diabetic kiddos! 

We've spent 2 days at the clinic and have one more in 2 weeks, 
I am calling her doctor daily with blood sugars.
and then eventually it will go to every 3 months.
(with calls in whenever I need to)

 This is the medic alert bracelet she picked out! 
(out of some really cute designs!)
Personality, I tell you, she's full of personality!!
(I love that spunkyness about her!)
The bracelets have gotten way cooler than when I became a diabetic!

She did pick a pink snake thing on top...

We are trying to find a new normal here, 
as if mealtimes were not already stressful, 
God has a sense of humor.

(I'm not laughing yet, but I"m trying to)

Breathe, Jamie, Breathe.
 Jesus, I trust in YOU

I wanted to write about this, in the hopes that someday this might help someone
who is going through something similar
This is where I am right now, I always try to blog real
And this is REAL

(no promises when though, hopefully within a week or so)


  1. You remain in my prayers, your plate so full right now I just wish I was really your neighbor because I would love to bring meals, take kiddos and hold your hand while you vent. *hugs* Jamie Jo, I know this is just tough, tough,, tough but I can't stop thinking about how you caught this before she had a crisis - i wouldn't know what to look for but you did - that is such a blessing!

  2. (((HUGS))) You and your family are amazing, Jamie. Nothing shakes your faith. Nothing. And because of that, I know great blessings are coming your way. I wish I was closer to help you out some, but for now, my daily prayers are going up for you and all your beautiful family.

  3. All you can do is take it one day at a time, and if that's too much, one breath at a time. I am certain it is overwhelming but you are at least blessed with the knowledge ahead of time so it's not completely uncharted waters for you. I'd be researching like crazy right now as well as crying and praying. My entire knowledge of Type 1 comes from The Babysitter's Club and a roommate I had in college with an Insulin pump. (So not a whole lot of knowledge is what I'm saying.) Your family has been in my prayers and you are not forgotten!

  4. My grand daughter has juvenile arthritis and while aspects of the disease are different from Diabetes, I totally understand about having a child with a chronic life-threatening disease. It is very stressful. Your sweet daughter's name in on the prayer roll of our church at the Gilbert Temple and she is my personal prayers as well. God will help you all to "keep breathing".....

  5. You've been on my mind, on my mind, on my mind, dear Jamie. I've been sending prayers and knowing that what I have going on right now in my house is nothing compared to your full plate. You are always close to Jesus' heart and Mary wraps you in her motherly mantle. I know they do because I know you and your devout trust and faith. You are so inspiring and such a great mama. Keep breathing and knowing that so many of us are praying with and for you. Love you and sending lots of hugs.

  6. Oh my goodness. I was thinking about you just a couple of hours ago wondering if you've lost it yet because I would have lost it on the day of her appointment. You are such a strong woman, who has the right to cry and throw a tantrum. You continue to wake up and take on each new day with a love that only a wife and mother has for her family and God. I continue to lift you up in prayer! Hugs to you!!

  7. SO much on your heart....sorry friend. Will pray. I understand a fraction, with my own T1 son....the worry. HUGS.

  8. My prayer is with you, and with your precious girl. I kinda lost it when I saw the bear, he is so sweet. I am in awe that someone thought about making such a perfect little pal for children learning to deal with this. May God bless all of you.

  9. Keeping you and your sweet girl in my prayers!

  10. You are so strong, my friend...
    But loose it if and when you need to.
    A good cry can really make you feel better.
    Rest assured...Many of us are praying with and for you. : )

  11. I can't tell you how many times I've had that feeling like I can't breathe...all the kids sick at the same time, all crying at the same time, worrying about how we are going to pay the bills. Our children's health truly is a treasure and how I often I take that for granted. I will be praying for you! God will give you the graces to handle this, hopefully over time, it won't be quite so stressful.

    What kind of foods can she have? Maybe I could offer some recipes that my kids enjoy.

  12. Prayers for you and your little girl!

  13. Yes, I have been away. Oh, I am so sorry for your struggles right now. I would be overly anxious and worried about lows too. I read through your other posts and I think another positive thing is that you were totally on top of it and caught it from the get-go. And she is lucky that you share the journey together, rough as it is. I am much more aware of my children's autoimmune disease since I share it with them. I thought I was before, and I suppose I was, but it wasn't until I was positive too that I realized that I didn't really get it.

    I know you said no to the pump as an adult but maybe it'll be an option for you daughter and make a world of difference (once it's an option).

    Maybe you already know this but celiac disease has a high comorbidity with type 1 diabetes but I think it might be routine now to test type 1 kids for it??? Just throwing that out there! I have a silly question. Why do you need to take insulin before eating versus while you eat or immediately after? I don't know much about it except that it's autoimmune (and it CAN be hereditary - autoimmune diseases are), that you absolutely need insulin, and the signs of it. My oldest showed signs after having the flu but then it went away and if he gets really sick it shows again. It's really weird but most doctors tell me that it comes on suddenly. I've only had one doctor tell me that it can take years to completely destroy the pancreas enough to go into that emergency state and maybe illness is stressing his pancreas. I worry. My son is the "lucky" one - all the weird stuff happens to him. Real lucky. I wasn't too anxious over health until his odd year pre-diagnosis. I totally get the anxiety and pressure and overwhelming feeling.

    I bet most of us praying for you understand that and have those feelings, for different reasons and different circumstances.

    I wish I was closer to be of more help but I can offer up prayers for you, your daughter, your family. God bless!

  14. Oh Jamie! How I wish there was something tangible I could do for you. The kids remember to pray for you and your kiddos every night.

    You do have an incredibly strong faith and love for Our Lord. You inspire me more than you can know. Sending much love and many prayers your way.

  15. Hi Jamie,
    I'm sure that this won't make your stress go away (Oh how I wish it could), but I know that troubled breathing feeling that you talk about. I've been there and I truly feel for you. You have the right attitude -- I used to say, "If I don't find a way to laugh - I'll cry." Keep trying to laugh. You are still in my prayers.

    Oh, I'm wondering.... Did your doctor recommend a box-kind-of-think that she could wear that's attached to her hip? It tracks her levels and feeds her her needed doses? My friend had a 4 year old son who had Type 1 (Her husband had it, too) and he was able to get a "box" to wear. He was very young at the time when he got it (he's 13 now). She said that once they figured out how to make it work for them it was much less stressful. I hope you can find something that helps you both.

    God bless you and give you peace.

  16. Sometimes our seasons are filled with more and more crossed to bare. My prayers are with you and I share my own family prayers, asking Our Mother to pray for us and help us be more like her. Such patience, love, and trust. If only....

    You offered prayers a while ago and I still smile when I remember the comment you left for my husband on the day his surgery. The prayer and song, "Wichita Lineman", made us both smile. I don't have a song for you now, but a tight {hug} from California.

  17. Oh Hon, I'm offering up my ants for you. Damn ants (pardon my French); they're EVERYWHERE, including IN the cupboards and on the walls of the hallway.

    Small problems, right? The small problems help me to keep my perspective.

    Love you! Also, when are you going to Moms Night Out? I'm thinking I might pop up for it because I'd love to see you.

    1. Thank you for the ants! :)
      Terro...the best ant killer evah!!

      Gosh, Mom's Night Out...there is a group of ladies going this Friday...I planned on going BEFORE the Bridget thing. My first thought is, "I can't go." Period. But then, the more I think about it, I think I need to just because I need to know she can be taken care of Tom, not JUST me. (he can and does, but I'm kind of a control freak and want to be the one who does it) Make sense?

      SO, he's talking me into going. I'm afraid my mind will not be on the movie, but thinking about Bridget.

      I'd love to tell you to come, but we would not get to visit!! Movies take up talk time!
      I'd want to skip the movie and just go for coffee....

      Love you!

  18. Hugs and prayers for you, Jamie! Jesus loves you! He KNOWS what crosses you are bearing, and He walks with you.

  19. Thank you for the update. I have been *calling!!??* and wondering how things are going. I know you have a plate full and I am thinking of you and Sweetie Pie every.single.day.

    I am here for you. If you need to talk?!! I am so thankful she is in good hands..yours and Gods. She is blessed that you can help her.

    Hugs and Love to you. Again, I am so so sorry this has happened.

  20. Prayers and hugs for you Jamie. God gives us only what we can handle.

    You will get through this one too. I have been following your blog since a really long time now and I know how strong you really are.

  21. This quote reminded me of you :)

    "And the realization — that a mother’s labor and delivery never ends and you never stop having to remember to breathe." -Ann Voskamp

  22. For what it is worth, we had our daughter on the Medtronic pump about two months after diagnosis and have been on Medtronic pumps ever since. We are currently on a waiting list for their new pump with the closed loop technology - very exciting! My husband or myself still get up every night to check her - every night for almost eight years. I understand this is all on you, I feel like every visit with our daughter is essentially my report card. I pray for you and your daughter often!

  23. I think I would have written exactly the same thing when Amelia was diagnosed.I was so mad at God and felt jealous of a few people too. I questioned why and tried to stay positive but sometimes it was just too hard.

    When Tom was younger, we gave him insulin after his meal rather than before. His hba1c was not as good but he didn't have as many lows as he was when we gave insulin before meals.


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