Tag Archives: newborn

DBlogWeek Day 3: What Brings Me Down

Starting this blog off singing the song we wrote for our walk video this past February.

It brings me down, but I get up! Yeah!!! It’s never gonna make me stop!

Dealing with a chronic disease every day and every night takes its toll on a person.

It’s not just the  blood sugar numbers, yeah that’s a big part  of diabetes but it’s not the only part.

There’s a lot of math involved as well:Counting, adding, subtracting, dividing  of carbohydrates, fiber, activity, adjustment of blood sugar all just to figure out how much insulin is needed!

Then let’s remember to figure in emotions and other external  stresses! They affect  everything way more than you would possibly know! Pet beta dies,  blood sugar hitches a ride on a spaceship with a destination of too HIGH! And it doesn’t want to come down anytime soon.

I never know if my daughter’s attitudes and behaviors ate from high or low blood sugars, or just her acting out.

Add all of this into the sleep equation and life takes on a new meaning! It’s like having a newborn baby, that never grows up!

I’m thankful that when I’m feeling the big d burnout, I’ve got a lot of great friends who are always willing to listen. The pwd’s, d-mamas & papas in this club are some of the most amazing and down to earth people I’ve ever  had a chance to meet. They’ve all been there, they all know what it feels like and they might even offer suggestions.  There are so many resources out there of you’re looking for them. Books, vlogs, blogs, podcasts just look around and you’ll find something!

JDRF has been an amazing resource for us as well. They are willing to help you find someone to talk with if you need it. One of the first diabetes connections I made was through their mentor program.

 

Diabetes is like a Newborn

Having a child with type one diabetes is much like having a newborn baby. The time, the devotion, the energy, the lack of sleep, their accomplishments. We hold our breath and cheer them on.

We parents devote so much time and energy to caring for our newborns. The sleepless nights, the 2 am feedings and diaper changes, the midday naps or cleaning sprees. We have constant feedings and diaper changes. We have a baby monitor in their room so we can hear if they wake and cry during the night. During the day you spend your time checking on them constantly, not leaving them alone for long for fear of something dreadful happening. If you have ever had a newborn baby you know what I’m talking about.

When my daughter was diagnosed with type one diabetes, I felt like I was instantly transported back to a time of sleepless nights, 2 am feedings, midday naps and late nights. After almost 5 years since her diagnosis, I still find myself stuck in this stage. There is once again a baby monitor in her room, not to hear her crying in the middle of the night rather to hear if her CGM alerts of rising or high blood sugars, and falling or low blood sugars. I find much of my day and night are spent caring for her and her diabetes. Checking blood sugars, correcting high blood sugars, giving quick carbohydrates to bring up low blood sugars, counting carbohydrates, calculating insulin doses, changing insulin sites, checking for ketones, always worrying that something might go wrong.

When we leave the house with a newborn we take our purse and keys,and take an extra bag with baby supplies: diapers, wipes, changing pad, bottle of breast milk (or formula), a pacifier, an extra change of clothes, blanket and a few toys to occupy our baby. When we go on a trip with a baby we pack EVERYTHING! Diapers, wipes, bottles, pacifiers, playpen, loads and loads of clothing and pajamas, strollers, thermometer, baby tylenol/advil, toys, blankets upon blankets. We pack more than we need, but we still pack it just in case. They grow and we as parents learn to pack less for them and give them more independence as they get older.

When leaving the house with a child who has diabetes we take our purse and keys, and grab an extra bag containing: a glucose meter, test strips, extra pump site/tubing, glucose, snacks for low blood sugars, lancets, extra batteries for glucose meter and pump. If we will be gone for a longer period of time we also pack insulin, extra pump supplies (including sites, tubing, cartridges), adhesive for over the pump site, skin prep (we use hibiclens), alcohol swabs, adhesive remover, syringes in case something happens to the pump, ketone meter and test strips, extra CGM sites, along with the usual items!

Having your baby sleep through the night is something all parents look forward to. It’s a big accomplishment. We will always worry about our children, as they grow and become more independent. Every step they take from that very first one that we cheer on and mark down to always remember, they gain independence from us. That first step they take is scary and exciting, we hold our breath as we encourage them to take another. I find myself holding my breath as I encourage my older two children to take steps on their own to gain further independence. It is scary to watch them move forward with their lives knowing that one day they will graduate high school and move onto college and lives of their own. I will be here to cheer them on every step of the way.

Having my daughter counting her own carbohydrates for a meal or a snack that very first time was a big accomplishment. The day she stopped crying at having to have her blood sugar checked or insulin given, that was a huge accomplishment. Watching her give herself insulin for the very first time, took my breath away. One day she will be more independent in caring for her diabetes, but I will never stop worrying. Each small step she takes in gaining independence is scary and exciting. She’s taking some of those small steps but she’s not ready (and neither am I for that matter) to take on full, solo responsibility. Until then, I will continue to teach her and do it for her. One day she will take it on and we will celebrate!