Ten months of classes. No sleep in Saturdays. No idea what I’m going to wear, last minute, as I gather the kids and rush out the door. A full hour and a half of sitting in a chair waiting for one kid to come out of class as the other goes in. Antisipation for costume reveal. Sock buns. Hair spray. Bobby pins. Sock buns. Sock buns. Tights. More tights. “Where are the tights?” Application of mascra and eyeliner on a squinchy, unwilling little face. Dress rehearsal. Then this day … Recital day! The day they show us what they’re made of … the day they show us what this ten months was all about. Boy did they show me! My son moved !!! (100 times the step up from dress rehearsal) Oh my gawdddd he was so cute, it hurt. A true testament to the fact that a four year old will do anything for bubble gum ice cream. My daughter though … she can dance! Not just follow some direction, look at the older kids and copy. She actually did it! On her own, with pride beaming from her little face. I could actually see her determined mind communicating, confidently, to every muscle in her body. Then the biggest moment of all … when I get to hug my little star and watch the next half of the show with her, just us (and my dad, this year 💜). She is SO happy, so proud, excited and inspired. All I can see is that she’s SO grown up. She’s watching all her friends (I’ve never met a five year old with so many friends!). She’s cheering, clapping, hollering. It’s the official start of summer. Officially! I’ve had this moment with her for three years already and I’ll get to do it again, but not enough. When did my baby get so big? Why won’t time slow down? I’m in awe of this little human. I can’t wait to see what she’s going to do next, but if we could just slow it down a bit, that would be okay with me. 💓 #tinydancer #officiallysummer #thesemagicmoments
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.
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.
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.