Tis the season.

It’s that time of year again … out come the long sleeve shirts and jeans, slippers and favorite hoodies. For many kids and many parents, it is the season where people finally give you break. They stop asking what that thing on your kid’s arm is. They stop wondering what is attached to their leg. After all, diabetes is an invisible disease.

This is the time of year I’m most reminded that this disease is everything but invisible. A type one diabetic mom never forgets that their heart and sole is running around with a bomb attached to their little perfect body. I mean that figuratively, while a pump, itself IS a bomb in it’s own right and should always be thought of as such.

This disease is relentless. The days that seem to make the most sense on paper are actually the days when diabetics and diabetic caregivers are the most baffled. Being the mother of a child who is on a treacherous blood sugar battle to the death is like watching an old wooden coaster in New England. You know the one .. it’s the best one at the park, but if you stand at the right angle you can actually see it shift as the car races the tracks. It’s a wooden roller coaster, so it’s okay, right? Yeah, let’s go with that. I guess there is a difference, the people on the coaster knew full well that the coaster seemed sketchy, yet they chose to take a risk, have fun and maybe not die for that five minutes of their life. No child, no parent, NO ONE EVER chose to have type one diabetes, there’s no way to step off that death ride.

In my very specific case, my child will never know a life without this invisible disease. For all intents and purposes it is, just that, to her, invisible. Sure, she sometimes has a tummy ache. When an alarm goes off she knows she can drink a juice box (which she loves!). She gets poked with needles often and understands that she is part robot and that’s just who she is.

This baby has never had to manage her disease alone. One day I will obviously need to teach her. I imagine it will be slowly over time, easy and natural … But here’s what I was thinking … what if I don’t. Crazy, right? More than crazy? Oh for sure!

Right now, I’m the one with diabetes. She has devices on her body, but I’m the one that feels the most emotional and mental pain. I’m the one with the sleepless nights, carb counting, meal prep, bag full of medical supplies and tools. It’s all me. Maybe it is crazy .. but wanting for that to become a burden on her is not something I look forward to. She is a fighter and she’ll be okay. I know this. I would just give ANYTHING to make this disease as invisible to her as this favorite hoodie season makes it look to everyone else.

The perfect drug.

There’s this thing we all do, the most important thing we ALL do … MOVE. Moving seems like so very little, but truly, it’s the most important phenomenon. The ability to move is a gift that many squander. Whether you take moving for granted or you were a mover and shaker your entire life, every living thing feels that ache and yearn for movement when they have limitations.

I have been blessed to be acquainted with many great examples in life and I listen to them! My dad is a man that was born with congenital heart disease. He has had many a surgery and many a surgery complication. I have seen him on life support twice, once in a coma for a week. My father has organ function slightly higher than that of a cadaver. Still, every single day he is working, moving, producing and creating with all that he has. He once told me ” if you don’t use it, you’ll lose it.” My dad sure knows how to use it!

In this chapter of my life, the “life creating” chapter, I have lost the “it” my dad was referring to so many times. I lost movement by choice. I lost it because being pregnant was more important. I lost it because sitting around breastfeeding my miracles was WORTH it. I lost it because cuddles and book reading was worth it. I lost it because they ARE worth it.

Regardless of why I lost movement or whether it was worth it … it SUCKED to lose it. Something starts to eat away at me when I’m not moving, like an orca in a swimming pool. I crave movement like a drug.

I need to run like a kid, as fast as I can. To run like I’m running away from everything and everyone that bothered me recently. I can actually feel that moment when the endorphins start running through my veins and I become me again. No longer am I my circumstances. No longer am I that awful day I had. No longer am I that dreadful bill I can’t stop thinking about. No longer am I just someones mom, someones daughter, someones friend, sister, employee or wife. I am ME for ME with no one else to report to, feel responsible for or please. I am on that journey of movement all alone. The rewards are my own. My body is my own. Pores that have been soaking everything in and laying dormant open up and push everything out. They push out the harsh self criticism, the self doubt, the situational anxiety and the fear. I’m left with myself. But fresher. Stronger. Clearheaded. Brand new.

There is a healthy balance in life, a strength in getting what you want and being patient for what you can’t have (yet). Through this chapter of life, I have learned a patience that I never knew existed within myself. I have learned discipline, routine and structure in it’s most selfless form. I am amazed at what my body has accomplished and I love it more than I ever have. I know I will always crave movement, but more importantly, I have proven to myself that I am strong enough to be still.

 

 

 

Back Burner.

It was July 23rd 2017. A nurse handed me a 15 month old baby. She looked just like my baby. She talked just like my baby. Something was different. This was a BRAND NEW baby. I didn’t know how to take care of this baby. Everything had changed. Everything was different.

From the moment that they yelled out that my baby had type one diabetes, I didn’t care. She was awesome. Diabetes or not this kid was perfect.

After a week long stint in a pediatric ICU it was now my turn to figure out how to keep my child alive. This new baby came with accessories like no tomorrow. Walking out of the pharmacy for the first time looked like me walking out of Victoria Secret’s semi annual sale.

Overnight, I had to become an expert at injecting hormones into a tiny person that would die if I injected too much. It was like that newborn parent feeling you get when you wake up in the middle of the night and you think that you left the baby on your chest, but it isn’t there because you put it in it’s own bed before you fell asleep … except it was ALL the time.

It was laundry, diabetes, breakfast, diabetes, work, diabetes, shower, diabetes, snacks, diabetes, phone calls, diabetes, diabetes, diabetes, diabetes. I was advocating for her on the phone with insurance companies, specialists, doctors and medical equipment companies at least three hours a day. I even got 4 land line phones for all around the house to make all my time on the phone easier and so 911 would come to the house asap if needed.

Things got slightly easier and I was keeping her alive like a champ. She was always happy. However, keeping her alive wasn’t enough. No matter how close I got with her doctor; chatting until 10 pm on the land line (I inspired her to get one too, btw) and making constant changes to her dosing, diabetes was still weighing on me. I mean that literally! It felt like I was shackled and dragging a million pounds behind me everywhere I went. I had the constant thought that things weren’t as good as I wanted them to be. I worried about the long term effects of high blood sugars. It is a fact that high blood sugars in children before puberty creates no issue really what so ever in the long term. It was also a fact that my child was doing extremely well for her age. It still weighed on me.

I would wake up in pain, if I ever even went to sleep. I had cortisol running through my veins where blood used to be.  I was on the back burner and it was where I belonged. I was doing every single thing I could. My child was alive and so happy and doing everything any kid her age was. I started to fall into a fog. Every single time I looked at a blood sugar or had an appointment with one of her doctors, it was like I was in the backseat, a complete and total passenger in my own life. The doctors told me I was doing great. I said, “thanks”. I was tired. I was dragging ass. I didn’t think it was good enough and I wanted it to be better. I knew that I had to keep learning, keep reading, and keep alert, but all I wanted to do was crawl into a hole.

I was no longer looking forward to those two hour phone calls with her doctor. Not that I really ever “looked forward” to them, but it used to feel like they were helpful and I could see results in the changes we decided to make. The changes started to become so miniscule that they were barely worth the phone call. I felt like we were going around in circles, not a downward spiral, instead, a hamster wheel that I couldn’t escape.

I decided I would stop looking at her blood sugar as much as had been. It helped a little, but not enough. I was looking everywhere and anywhere that would take my head out of this endless battle with numbers, that really meant so little, but meant so much to me. I was becoming a self destructive, shell of a person and that back burner lit on fire.

One magical day I asked myself .. “Who the hell am I?” A failure? Hell no! “Someone who accepts “average” or “good” as enough?” No. It’s not enough! I decided no doctor and no God could help me fix my internal demons about diabetes and they certainly aren’t helping with her numbers anymore. It was all up to me and I know everything I need to know. I was scared before, but now I was ready! It was time for a miracle.

I self assigned diabetes to be about four things: MATH, timing, manipulation and nutrition. What do you know … those four things have always been my FAVORITE subjects. I picked up her pdm (insulin pump computer thingy) and made educated changes to her basal without any help from her doctor. I saw a change. I did it again. I saw even more of a change. I was finally in control, somewhat.

When we left that pediatric ICU almost a year ago they told me that it would take at least a year to acclimate to having a child with type one diabetes. I am still not acclimated but I AM challenged. I will not back away from a challenge that I have some control over.

Today we learned that my angel’s A1C is 7.2 which is down from 9.2 right after her diagnosis. I WILL make that number better every single time. Not for diabetes. Not for recognition. Not for me. I will get that number down every single time for that perfect baby because I owe her everything for sharing her life with me.

 

 

 

 

Bomb Baby.

What is it like to have a BABY with type one diabetes?

It’s like being a nurse, a first responder, a service dog, a pancreas, a negotiator, a nutritionist, a calculator and a bomb defuser all at once. The latter is really the most accurate.

Kids are really all a little “bomby” aren’t they? The difference between a kid without type one diabetes and one with it is that the type one parent needs to be on their game 24/8 because diabetes never sleeps.

There is also a difference in consequence between myself and a bomb defuser. When a bomb defuser fails, the bomb goes off anyway. The bus explodes, the building explodes, hell, maybe even the city explodes. If I fail and that bomb goes off, my entire world will explode. There won’t be a second chance. There won’t be the option to rebuild.

I have this itty bitty human that is stronger than an ox but as fragile as an egg shell. I have seen her run, jump, push, throw and hold her own against older siblings and animals four times her size. I have also seen her body pale, cold, unresponsive and drained of all life. It’s a scene that no mother should have to witness, yet only a mother could.

It is not a burden to constantly watch over this child, in fact it’s the greatest gift I have ever received. I love every single thing about my little cyborg bomb baby and I accept this challenge because she is still the girl that I gave birth to. It is my pleasure to walk this journey with her because a journey without her is NOT an option for me.

IMG_20180525_165316_401.jpg

Perfect Imperfection.

How long does it take to make a perfect carrot cake from scratch?

Find the ingredients … crush the nuts … bolus the two year old … grate the carrots … Freeze dance around the island … “Mom is the cake ready yet?” … measure the brown sugar … snack time .. prep the pan .. “Mom is the cake ready yet?’ ..

Making my perfect carrot cake with my children bothering me constantly is probably the only way I’d have it. I genuinely can’t remember the last time I felt comfortable standing still and silent. I have really always found calm in chaos. I also have always enjoyed being alone.

Things are a little different now. Yes, please, if you see me leave me alone. But hell, if for some very unusual reason I find myself alone in my house during the day you better believe I’m dying on the inside FOR REAL. Without the pitter patter of little feet, the shouting, the laughter, the whining and smashing; I’m completely lost and planning my escape, like I am running from a hippo.

I feel broken and so whole at the same time. My life hurts without them and that’s exactly what I know that every parent needs to feel. That moment to realize how much you miss your kids, that is the moment! The diapers, the tears, the dirty faces, the sticky fingers, the bum wiping, the mud puddle you didn’t know was there until somehow it’s all over your child’s forehead, the sibling rivalry … this shit is so REAL .. and the list could go on for days.

It’s hard not to feel overwhelmed, stressed and annoyed. The important thing is to remember that it’s normal and okay to take time away from your kids … and when you do .. listen. Listen to that silence. I guarantee, in that silence, you’d give anything to hear a little voice say “Mommy, can you read me a story?”

My carrot cake is perfect. I’m not perfect. But as long as I can still hear those kids in the other room, I’m all set.

IMG_20180605_151535_119.jpg