"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.

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!

Thor!

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.)

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.

Letters

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.

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

New Normal - My honest opinion.

I was promised that raising a child with Type 1 D would eventually become our new normal. 

It has.

What does that mean though?

It doesn't mean that we would get back our "old" normal.  Not even close.  It doesn't mean we will ever feel normal either. 

I think it means we will become "used to it," calloused, numb to the everyday battle we have.

I no longer spend hours trying to figure out why my son was 58 at lunch when he has had fine lunch numbers for a week. 

I no longer wonder why eating pizza can raise him up to over 450 even though he was given enough insulin and in time it will come down.

I no longer am sad when my sweet 3 year old hits me out of anger, I just test his blood sugar and know it is because he is low... I give some juice and we move on. 

I don't cry anymore when I hear my baby boy explain to his Uncle how his pump "puts holes in my skin for my insulin."

I don't panic when my toddler is so low he doesn't recognize me, or when he is so low he can't find the right words even though I can see that he is terrified.

I haven't slept more than 4 hours straight in.... I can't even tell you. (And 4 hours is pretty long for us)

I no longer call and email our endo team for every basal, insulin to carb, insulin sensitivity factor, and IOB change because... eh... I know what they will say.  They do not know either.  But "Blah" is the best guess to treat it.

I am no longer depressed about it all, I take Zoloft.

Our normal includes: love; laughter; fun; giggles; magic; toys; preschool; family; holidays; treats; friends; vacations; learning; bedtimes; and play dates just like I always expected.  But now, it includes all the other D stuff that is hard. 

In the beginning I was told that it will get easier, but I think the better way to say it is, "In time it wont scare you to death every moment of every day.  Nothing will change, you will still have the same struggles you face in the beginning, but in time the ups and downs wont paralyze you.  You will get to a point that you are happy and enjoying life again.  You will have seen enough highs and lows to roll with them.  You wont even notice the medical device(s) attached to your child 24/7 to keep them alive.  You will be able to think about other things besides diabetes."