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I wanted this blog to be about my family's experience with my son's Type 1 Diabetes. My family is more than just diabetes, but I want this blog to be focused on how it affects our family. I hope other T1D parents find it helpful, and that my family and friends find it informative.

Sunday, August 5, 2012

Alone In a Crowd

One of the many things I LOVE about living in Texas (insert sarcastic tone here) is the beautiful weather we get during the summer.  I mean who doesn't love 109 degrees and humid?  It might as well be snowing or pouring rain because this mama does not go outside when it is that hot.  Does my 3 year old understand this?  No.  This year I decided I could not handle another stir crazy summer because I don't want to leave the house.  Plus, this is our first summer with T1D in our lives and part of me wanted to "prove" (I don't know to who) that he could still be just as active as any other toddler.  So we enrolled JJ for 3 classes a week at an indoor, aka air conditioned, facility for sports, gymnastics and martial arts.  Yay me, I'm super mom again... right?

A few days ago was his weekly Martial Arts class.  Martial Arts for 3 year olds is 1 part the cute outfits, 1 part learning to focus and avoid distractions, and 3 parts running around an obstacle course with a few stations for kicks and punching.  At least that's what I see while watching from the "parent area" behind the glass.  This particular morning was hard for us to get out of the house on time.  I almost didn't go, but I forced it because the week prior we missed a class for this reason and I didn't want to fall into that routine.  So we hurry out the door, and I didn't nurse Jocelyn as completely as I normally would.  However, I brought a bottle of pumped milk and figured she would be fine.  Its about a 20 minute drive to the gym and typically she falls asleep on the way and stays sleeping until we get home... but not this week. 

Pretty much as soon as we get to the gym and Johnny joins his class my little Honey wakes up.  She is not happy.  I get a couple looks from other parents that say, "Oh, I've been there.  It's fine."  I pick her up.  She is not happy.  I do the jiggle the baby while trying to sit in my chair thing, she is not happy.  I get more comments about "remembering those days," and "she is so precious."  Again, more sympathy and understanding from the group of parents, which is really nice because I start to worry that my crying baby bothers them like it bothers me.  I stand up and walk with her... nope didn't work.  I sit down and try the bottle, I try it holding her in various positions, I try the pacifier, I finally resort to the standing bounce and half squat thing... nope.  One woman offered to try the bottle for me as sometimes babies wont take a bottle from Mama, I declined but thought it was so nice to offer.  30 minutes have passed at this point.  So I do what I know will work, but I hate to do.  I buckle her back into the car seat and I become her human swing.  If you have never done this before, it sounds easy.  If you have... then you know better.  To swing a car seat you have to lean over just enough to have the car seat swing past you legs with out hitting them, but not too far or you will fall over.  Back pain is guaranteed, but its better than the screaming baby.  This has now prompted a few DADS to smile at me, because lets be honest ladies... this is Dad's job.  15 minutes later and I feel she is a sleep enough that is now safe for me to stop being a swing and put her down.  Whew!  I am a sweaty mess from my 45 minute work out.  I sit, blot off my sweat and reflect on how nice everyone was to me.  Texas is great in that way.  I grew up in CA, and I am positive I would not have had that kind of support from total strangers in the area of southern California that I am from.  Class is almost over.  I pack up the bottle, the pacifiers, and all the other Jocelyn goodies I had out.  I get out Johnny's dexcom (its out of range when he is in class so it doesn't give a number) and his testing kit.  When he comes out of class I have him sit and drink his "bubble juice" aka diluted carb free flavored carbonated water, and I test him.  He keeps asking to get in the car.  Jocelyn is stirring again now.  I wait for the number, formulating a plan to get to the car, turn on the air, give him a snack and go home.  I just need to know this number and have his dexcom connect so I can decide how much of his snack I should give him insulin for.  After exercise he doesn't need insulin for every carb like he would before exercise.  Tick tock... 5 seconds always takes forever to pass when I am in a hurry.  Then it beeps and gives me the number I need to move on.

45

(Insert the F word here)  For my non D friends.  If you check your blood sugar in the morning after not eating for 12 hours you will most likely be in the 70s give or take 10.  Below 80 and I feel shaky and anxious.  45 is beyond low for any one with a normally functioning pancreas.  I've never been that low to tell you what it feels like, but this is what I read online:

Symptoms of hypoglycemia may include:

  • weakness, drowsiness, confusion, hunger, and dizziness.
  • paleness, headache, irritability, trembling, sweating, rapid heart beat, and a cold, clammy feeling are also signs of low blood sugar.
  • loss of consciousness and coma (in severe cases)

He was 185 and rising 45 minutes ago.  Class has never caused him to go this low!  Why this time?

Whatever, we move on.  I have learned asking why is pointless.  I hand him the 15 carb apple juice.  The other day I let him have 17 carbs with out insulin to see how much it would bring him up and he went up about 200 points.  So if D played by the laws of Math we should see him at 245 after some time as passed.  I am now actually sweating.  My adrenaline kicks in when I see numbers that low and I can't help but sweat.  The parents are all clearing out, they get to leave.  They don't have to check their kids blood every time they go somewhere to make sure it is at a safe level to take a 30 minute car ride.  I feel that envious feeling I am ashamed to feel. 

After 15 minutes, Jocelyn is awake, not crying but fussing.  I am kneeling on the ground in front of Johnny sitting in his chair.  I poke him again, I squeeze out the drop I need, I test him again, I wait for the number... I am almost sure it will be at least 100.  We can get in the car, Jocelyn will fall back asleep, I can give Johnny his snack and if he is high when we get home I will correct him then.  I have a plan... I always have a plan.  The meter beeps and gives me the number.

56

45 pisses me off, but 56 after all of this effort just sinks my heart.  We can't leave yet.  I give him the package of skittles.  I can feel people looking at us with out making eye contact.  It is weird.  My mind plays internal dialog like, "Why is that overweight mom, giving her husky boy skittles at the gym?  Doesn't she know she is going to make him fat like her?  That poor kid, I would never give my kid candy after exercising."  Johnny eats his skittles and asks for more juice.  I only have 1 box left and nothing carb free.  I don't want to give him more juice because I KNOW the 15 carbs of skittles will be enough.  I look around and see a water fountain down the hall.  It is just too far away to leave Johnny and Jocelyn to go fill his sippy, but I can't pack everything up and take both of them either.  It would take me just as long to pack up and get to the fountain as it will to wait until I can test him again.  I still feel everyone looking at me, not saying anything.  We are the elephant in the room.  I decide, I am going to ask someone to fill his sippy at the fountain for me.  I look around, not standing up because I am on the floor rocking Jocelyn to keep her from screaming.  No one will make eye contact.  Its a loud gym, I would have to yell to get attention at this point.  People are walking by, looking at Johnny and quickly looking away.  Even his instructors who KNOW he is diabetic just turn and go the other way.  I am making them uncomfortable.  Where are all those helpful supportive people now?  At least 5 complete strangers would have helped me with a crying baby, but now that my son is in real danger I can't even get anyone's attention.  15 minutes go by, I test, he is 110.  We pack up and leave. 

On the way home I had a good cry.  I felt so alone with so much on my shoulders.  I couldn't wait to get home and tell someone who would understand.  Someone who has been there, someone who has felt that anxiety of is 45 going to get better or worse?  Do I have the glucagon shot?  I was so eager to get home and share this with the women whom I have never met but mean so much to me.  The Diabetic Online Community "DOC" means more to me than I ever thought it would.  I think I even bashed them early into our Journey.  I felt I wouldn't become one of those worried moms, and I would rise above it.  But everyone needs a place to feel safe, and to feel understood and these moms (and a few dads) provide that place for me. 

So even though I was too busy to actually share this story with them when I got home, knowing I could and that they would all understand made me feel so much better.

To those of you (and you know who you are) who are always there for me, riding this T1D ride with me, laughing with me, and crying with me.  Thank you!  I may not know your face, but I know you, I know your kids, I know which of you will be in tears by now, lol.  Thank you for reminding me that I am never going to be alone.

8 comments:

  1. Ohhhh Jaime!! I wish I was there to help you. I am crying right now, and I'm not even sure why! I think it's because I can put myself in your shoes and I can feel what you are feeling! Anytime you need to vent, or anything ... I'm here! <3

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    1. Andi, I knew you would be in tears! LOL And I know you are here for me, and I am here for you too!

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  2. I'm crying as I read this knowing exactly how you feel and how scary a low is. My son is bouncing now but you wouldn't know that just ten minutes ago he had a low of 48. I'm grateful that this time he drank his juice and ate his snack and I am confident when I go check him in a minute he will be plenty high enough. But boy is it scary! And boy is it difficult with two little ones. Its hard anyway. Then add in the complications. Shame on those people for not at least asking if you could use some help. I'm so sorry you were alone. Hang in there! Know you are not alone, even when it feels like it. We are your virtual cheerleaders.

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    1. Thank you Dana! Aren't you supposed to be at the hospital today with your own stresses to manage? I read your post and I feel for you. I hope you find it easier to be there this time, and I hope the results of the testing is what you need it to be. I don't want to say I hope it isn't diabetes, because we both know these sugar babies are strong and handle D better than we do, if it is D you can do it. I often have people tell me that I was ment to be a Mom of a T1. I take it as a compliment. I cry, I worry, but I can do this and so can you!

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  3. Totally crying! I've felt that fear. :( so glad I found the doc too! I would be so lost without all of you! :)

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  4. Hugs. Haven't had your exact situation, but many others like it, with family even! Oh, my. I can just feel what you were thinking then. My youngest was 6 months when my 2.5 yr old was dx'd. It is definately tricky and tiring. Thanks for sharing this, Jaime.
    xo Jules

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  5. Girl I feel your pain! It makes me so sad no one offered to help when you really needed them to! I would have yelled and said one of you get up and fill this darn cup up NOW! LOL!
    Hang in there you tough mommy! Its the strong who handle this disease everyday and you are it!

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  6. I read your blog after u posted the link on my fb page. I can't imagine how it is to deal with this disease with younger aged children. I think how this sucks for my teenager but then think how grateful i am that my daughter had the first 10 and half years of her life diabetes free!! I wish that we would have taken advantage of more times without dealing with this disease before having to deal with it! but oh well life will go on for us in this matter and life is still very good and happy!! just different than before. Life is good for her and I am thankful for the people I have met because of this. The DOC is truly a blessing. Hang in there!! and give your kiddos a big hug for they are your blessings!!

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