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.

Wednesday, August 20, 2014

Could it be my fault?

That's the million dollar question.  The one women ask every day.  Is it my fault my toddler is a biter? Is it my fault my child is allergic to milk? Is it my fault I can't get pregnant? Is it my fault my son is getting picked on by his peers? Is it my fault my teenager is disrespectful?

Is it my fault both my kids have a form of an auto immune disease?

I can say with a 60/40 belief that no, I didn't directly "cause" this.  (At least, I didn't do something to cause it other than use my own eggs to create them.)

But is it my fault my child isn't emotionally ready for kindergarten?  His preschool teachers said he wasn't.  An independent evaluation said he wasn't.  His pediatrician said it would be best to wait a year.  Everyone agrees that my 5 year old (spring birthday) intelligent boy isn't ready to join his peers at kindergarten. 

Is this my fault?

Lets go over it-
I breast fed for over a year.
I read to him every night (okay... most nights).
I taught him his ABCs before 4.
He can count.
He can sound out 4 letter words.
I show him love and affection.
I let him voice his opinions and try to give reasons instead of commands.

I did it all right! Or did I?

I let him eat cereal for breakfast everyday instead of arguing with him.
Cereal spikes his Blood Glucose to almost 400 EVERY morning.
Blood Glucose of 400 makes him irritable, frustrated, emotional, and cranky.
I pack his snack on school days.  Its always healthy, but I ask his teachers to dose him for 5 carbs less than he actually eats.  I do this because I am terrified of him experiencing a low at school, away from me.  I can see the lows, I don't know if anyone else can.  So I run him slightly high. 
Most of the time, running slightly high is fine.  He is between 150-200 when I pick him up.  Not a range that would cause the emotional and irritated symptoms of a high.  BUT, there are times I pick him up and he is over 350.  I imagine how hard of a day he must have had.  Its the same day he may always have, but experiencing it with HIGH blood sugar means he had a hard day.
He's emotionally not ready for kindergarten they say... and I agree now.
But is it my fault? 
If I insisted on eggs and fruit would he have these emotional delays? 
Did my decision to allow cereal for breakfast change the course of my child's future?

I don't know, and maybe it doesn't seem to matter to you.  But for me, watching all the newsfeeds on social media of all my friends sending their children to kindergarten, looking at my 5 year old who cries when his 2 year old sister takes his toys.... I wonder...

It won't matter in 6 years.  It might not even matter in 6 weeks, but today I feel a huge amount of guilt.  Guilt that it might be my fault, and guilt that I am so incredibly relieved that I don't have to send him to a new school.  Guilt in my relief that I don't have to send him to a new place and trust that they wont make a fatal mistake.  How the heck do other T1 parents ever let them go?

I have friends who are sending their 5 year olds to kinder this fall, as well as friends choosing to wait a year like we are.  The only thing that helps me sleep at night is we ALL seem to be worried about if we are doing the right thing, regardless of the choice.  To these ladies, I can't wait to see what we lose sleep over next! 

Thursday, October 10, 2013

"You need a break!" Where is that line?

Last week this Mom found herself in the ER on a Friday night, scheduling her surgery to remove her gallbladder the following day.  Thank goodness we have Grandma who dropped her plans and rushed over to stay with the kids overnight and into the next day. 

I am healing, slower than I expected but I am.  Yesterday was 5 days post op and I am only taking 1 pain medication and only at night because laying down is more painful. 

6:45 Bath time is over.  Johnny is asking for ice-cream and tonight is a site change day, so its a good night to measure 1/2 cup and let the 4 year old enjoy some cookies-n-cream.  Ice-cream all around, site change goes very smoothly. 

7:00 John places Jocelyn in my arms while I rock her like every night.  He then lifts her from me and sets her in her crib as I can not lift more than 10 pounds, doctors orders.

7:45 Johnny tells me he is hungry, a very normal way to put off bedtime.  I always check blood sugars when he says he is hungry or low.  It is my unspoken promise to him, that I will never discount his feelings about D.  He is 191.  For some reason, I do not check how much active insulin is in his system... that is not normally how I would handle it.

8:30 I decide I am off to bed and take a pain pill.  John says he will join me soon.

8:45 I am feeling loopy and glad to be in bed.  I hear John turn off everything downstairs and then head upstairs to check Johnny before our bedtime.  I hear John waking up Johnny telling him to drink.  I know he is low, but honestly I am very medicated and I am happy with my decision to let John handle it.  John comes down a few minutes very uneasy and tells me Johnny was 39. Reality check... D doesn't care if I am on pain pills and if John weren't around I don't know how clearly I would be thinking.

9:00 We are both wide awake.  He is 64.  We forgot to suspend the pump so we do that and wait again.

9:20 Johnny is 84.  I don't want to over correct him and shoot him sky high but 84 isn't good enough for us to go to sleep.

9:45 Johnny is 96.  We give 12 carbs of gogurt and set a temp basal for 50%.

10:00 Johnny is 135  We go to sleep and set an alarm for midnight. 

12:00 We wake to our alarm and John checks Johnny.  I have adrenalin pumping through me as I wait feeling guilty I slept, feeling guilty I took that 1 pain pill, feeling guilty that I am in pain at all.  he is 114.  We set a new temp basal and I can tell John is wavering about setting an alarm again.  Its easy to judge him.  Its easy to not understand why he wouldn't set an alarm.  How could he possibly risk it?  The thing is, just because I am blogging about this night doesn't mean it doesn't happen all the time.  Maybe not this exact scenario, but scenarios that require John and I to decide if we need to get up again in 2 hours or if we can "risk" sleeping is nightly... not exaggerating... so sometimes sleep wins.  We are not proud of it, we feel that guilt every morning when we wake up.  But that is our reality.  I can see John struggle, I also know that I may not wake up again if I go back to sleep.  So I get up and I stay up.

Check at 1am, 96.  Reduce basal.
Check at 2am 140. Adjust basal
Check at 3:30am 156

4am I go to bed.  I am tired and sore but I do not have that guilty feeling I am so used to having.  John gets up with both kids at 6 and life goes on.

Kids go to preschool.
John goes to work.
I work from home.

We pretend that we weren't in fear all night.  We pretend that we are doing "okay." Johnny pretends that it doesn't effect him.  I pretend not to need help when people ask to let them know if they can help, because can I really ask that of someone?  "Yes, I would love your help.  Would you please come over and keep my kid alive all night.  Just poke his finger, make on the spot decisions on how adjust insulin settings based on previous scenarios and the days activities.  Don't sleep and don't let it show the next day... and the next.... and the next."  When I do absolutely need help, I feel like I am letting my helper down because I can't make it easier for them.  I can't spell it out nice and neatly for them.  I can't lay out a highlighted route for them to follow.  So asking for help is harder than just doing it.

If I do ask you for help, its because I desperately need it.  Its not on a whim.  I know it is a burden.  I can order take out.  I can let my house get filthy.  But what I can't do is take a night off, I can't sleep guilt free, I can't take a pain pill next time I hurt.  I can't ask more than once either.

Thursday, April 4, 2013

Party like it is your 1st Diaversary!

Whoohoo!  A whole year!  That means we celebrated birthdays, SWAG'd a ton of meals, took vacations to the beach, survived summer gym classes, went back to preschool, attended play dates, stayed alone with babysitters, trick-or-treated, had Thanksgiving pies, survived the MONTH that is Christmas, had multiple stomach bugs with KETONES, made Valentines, and hunted for Easter Eggs!

Heck yes we are going to celebrate the 1 year marker!!!  Life is short, bring on the reasons to celebrate. 

So we did!  We had a Super Hero themed play date in the park!

Johnny even got a ton of support from our DOC, Diabetes Online Community.  He received cards and even 2 presents in the mail.

His sweet Batman Dress-Up gear! (Thank you Myra, my bestie D-mom friend!)

1st Year through Mama's Eyes

March 7th was Johnny's 1 year anniversary of being diagnosed with T1D.  It is commonly referred to as a diaversary.  I thought I would do this in 2 posts.  How we celebrated Johnny's Diaversary will be my next post, but first I wanted to share with other parents  what my first year was like.

I actually can't believe it has been a year.  It seems like it was just yesterday.  My husband says it feels like it has always been this way, but I can't say I feel the same.  I remember life before T1.  I tucked those memories away, its still painful to think of how it used to be, how it will never be again.  Have I mentioned I have 17 8x10 or larger prints of Johnny hanging in my downstairs, yet not one is from this past year?  Even though I think it is just cause I have been too busy, I bet some head doctor would tell me that means more. 

To parents of newly diagnosed T1s this is for you.  I do not want to dwell on how hard the first year is, so far every post prior to this one makes that fact clear.  What I want you to know is this:
  • My T1d son is happy, healthy, and NORMAL. Your child will be too.
  • Lows happen, so do highs... educate yourself as much as possible so you can prevent as much as you can, but then let go.  You will still have them because Diabetes doesn't follow the rules sometimes.
  • You will stop crying.  You might get depressed, seek help if you do.
  • The panic, the fear, the constant thoughts about blood sugar/ketones/dka/ will lessen.  What paralyzed me a year ago is just another part of life today.  And our life is good. 
  • Don't think about forever.  Think about this week, or this month, or until the next Endo visit, or whatever you can mentally handle.  Nothing is forever.  Maybe our children will never see a cure but I know they will see improvements in technology for managing this disease, and for improving their quality of life.  Right now, I can totally handle another year... no sweat.  I'm not going to think about Kindergarten, Sleepovers, drivers licenses, just say no, college, or any of the other things I can't imagine doing with T1d... but I can handle this next year so my focus stays there.
  • Practice your answers to dumb questions/statements about T1D.  (And remember how not so long ago you may have thought/said the same dumb things!)  It will make you feel better if instead of constantly getting frustrated by how misunderstood this disease is and being mad at people, you educate them on the facts.  Cinnamon is not insulin; our highly educated specialist who dedicates her/his professional life to children with D wants our son/daughter to eat carbohydrates like any other child; No he will not grow out of it this is an lifelong autoimmune disease, and lastly the favorite "there are only TWO things my child can not eat: poison, and cookies.... made with poison."  (I have no idea who to credit that to but it wasn't me.)
  • Reach out!  Find other parents in the same boat as you.  Read T1 Blogs.  Go to T1 conferences.  Read books.  Meet people just like you.  It is the best thing you can do for yourself and your family.  Support is a must!
Morning of March 7th, 2012 - A few hours before diagnosis.

Morning of March 7th, 2013 - 1st Diaversary

(Yes.... he has his iPad in both pictures.)

Wednesday, March 6, 2013

Keep Austin Weird...

Just about a year ago I started this blog with a post titled "What a difference a week makes."

Well... it has been another one of those weeks!  In a much better way though.  I spent 4 days in Austin at John's Sister's home.  His mom came with me, and both his other sisters also came at some point.  (I don't have any sisters... this was a lot of sisters, lol)  My 2 kids, Sister 1's 2 kids, & Sister 2's 2 kids made a pretty full house.  The reason we went was to attend the JDRF conference and see my favorite T1D mom speak.  Lucky me!

I have debated on writing about the past week by days (Thursday, Friday, Saturday... and so on), but that wouldn't do it justice.  I thought about doing a Pro/Con list, but there is too much grey area.  Maybe just summarize the week based on my professional life, mommy life, t1d life, extended family life, yada yada... but that's a lot of weird categories that probably only make sense to me in my crazy head.  So here is how I am going to try to talk about everything, AND keep it simple:

What I learned in the last 7 days
  • My husband helps me with the kids a LOT, I definitely noticed he wasn't there to help me.
  • I need to make more time for my kids to spend time with their cousins, aunts, and uncles.
  • I have family in Texas.
  • I am cranky cranky without sleep... (I don't need much but I need some or watch out!)
  • I would do better with less sweets, more wine, and more coffee.
  • That "weight" I feel I carry regarding managing Johnny's T1D will one day be his to hold.  It will be as heavy for him as I have let it be.  I can make his life easier now and in the future by not letting myself get weighed down by it.
  • If I let being a T1D mama stop me in any way, I am teaching Johnny to let it stop him too.
  • I probably have a few settings in Johnny's pump wrong.  In our case multiple wrongs are making a right, but it may not last... I ordered Pumping Insulin and when I read it I will make some changes, even start over.
  • I can take more control of T1D.  I can plan ahead better.  I can plan to prebolus.  I can get back to making tweaks weekly, or every other week even.  There are steps I can take to be proactive, and not just reactive.  If I aim to do this 50% off the time we would be doing extremely well.
  • WE are already doing extremely well.
  • How to take the Glycemic Index into consideration when looking at insulin on board.
  • Always give Johhny (and all my kids) the chance to make GREAT friends.  These friends will be who look out for Johnny when I am not around.  If I do not let Johnny attend social events such as swim parties, play dates, camp outs, and so on he will miss out on developing the kind of close friends he needs. (Or the kind of friends I need him to have around him as he gets older.)
  • Using a hammer doesn't make me a carpenter.
  • There are a lot of exciting things going as far as looking into the future of what sort of treatments are being developed.
  • I would enjoy helping new families.
  • I will hold onto hope, but I will not get excited about any treatments until my Endo calls me and says, "we want to schedule XYZ procedure/treatment."  Until then, I will educate myself and remain hopeful. 
  • I need to take more pictures... not ONE picture was taken regarding this weekend. 
But more than what I learned, what I felt shift this week was that feeling of despair, it actually melted away.  I am writing this 1 day before our 1 year anniversary and it is actually sort of funny but I truly feel a new that we have entered a new phase of living with T1D.

Friday, February 22, 2013


If letters could not only travel distance but time I would send the following:

Dear Jaime of March 6th, 2012,

Hey girl... you may want to sit down for this.  Tomorrow the world/life/dream you think you know will be turned upside down, shaken, and scattered in pieces that will take you a while to put back together.  It will never really fit back together the way it was, but that is okay.  What matters is ALL OF THE PIECES ARE THERE.  You will be just hours away from losing a huge piece of your life.  You see, today when you were taking pictures of your 2 year old baby boy "sleeping," thinking to yourself how cute he was, so tired that he passed out in his chair.  Actually he is 36-48 hours away from losing his life.  He is in DKA.  I know you don't know that term today, but it will be part of your vocabulary from tomorrow on.  Its going to be scary, its going to break your heart more than you thought possible, you will feel alone, you will not feel understood, you will be strong on the surface and crumble to pieces whenever you are alone.  I know this because I am you, 1 year in the future.  When it gets to be more than you think you can take, I want you to know this: 
  • You can take it.
  • Your baby needs you to take it.
  • You are going to make amazing friends because of this, you will NEVER be alone.
  • Your son is not nearly as upset about it as you are, don't forget this is his disease.
  • You will enjoy life again.
  • Your family will be stronger.
Tomorrow will be sad and scary.  The next year be full of ups and downs.  Embrace it all.  You were meant to be this boy's mama and this boy has Type 1 Diabetes.

Also this:

Dear Johnny of March 6th 2012,

I love you so much.  You are the most important person in my world.  I love being your mom.  I am so incredibly proud of you... and you are just 2 years old!  I know you are really sick today, and that you have been very sick off and on for a long time.  I know this now but I didn't then.  I am sorry.  Tomorrow you will see the Doctors, it will be scary and it is okay to be scared.  But please know that tomorrow you will finally start to feel better.  Your body will get the insulin it needs.  You will spend a long time in the hospital but your Mom and Dad will be right there with you.  There is no easy way to tell you that from tomorrow on you will have to deal with needles every day until a cure is found.  Its not fair, and being "used to them" doesn't mean they don't hurt, but you will get used to them.  You are not going to let Diabetes stop you!  You are about to be a big brother, and your baby sister thinks you are amazing.  We all do.  You, my son, remind me to be brave every day.  I love you.  I wish I could take this disease from you, or share it in some way, but I can't.  This is YOUR disease, but I will be there for you every step of the way.  I will find you the best care; I will learn everything I can about how to manage it; I will keep your life normal; I will go at your pace; I will let you have as much or as little involvement as you want regarding your Diabetes.  I will worry for you when you don't want to think of it.  I will advocate for you.  I will try to carry it for you as much as I can.  I hope I have not let you see my fear.  I want you to know that having Type 1 does not make you less, it is a piece of all the ingredients needed to make a "Johnny."  I love love love this Johnny, and I wouldn't change any part of who you are. 

And lastly:

Dear Future Self,

Remember!  Remember this day, remember yesterday, remember being diagnosed.  Remember what matters.  Do not get sucked into superficial things.  Family is what matters.  Those you love and who love you are what matters.  Don't assume they will be there tomorrow.  This includes yourself.  Take care of yourself, so that those who love you have the best you that they can.  They deserve it.

Tuesday, January 29, 2013

My kid is awesome...

No seriously... he is.

Maybe the reason he got Diabetes is because the Universe was trying to restore balance.  He needs SOMETHING extra to work on managing in his life otherwise he would just be beyond amazing.

At 3 years old he is sweet (lol), friendly, caring, bossy, smart, creative, curious, empathetic, funny, loving, opinionated, outspoken, and just plan awesome.

Awesome at puzzles!

Awesome at melting chocolate!

Awesome with stickers!

Awesome big brother!

Jocelyn is pretty amazing too!

Amazing napper!

Amazing banana eater!

Amazing at being amazing!

**Yes yes... your kid is awesome too... but this is my blog.  LOL