Falling down and getting up in the land of T1D…

There are so many obstacles on the type 1 diabetes path, so many rocks that get into your shoe, little tiny irritants that add up to one big urge to throw in the towel. There are boulders, falling from out of nowhere, blocking your path. Sometimes, like today, damn-I just want to find the nearest cave, huddle inside it with my family and pretend the world and our path do not exist. 

Right now I’m looking for that cave, and I can’t pinpoint an exact ‘thing’ that happened to make me search for it. I know a lot of little rocks have piled up, and I keep moving them, but bigger rocks keep landing in the way and I am getting weary of having to move so many. I am tired.

In the land of T1D, I don’t often admit how exhausting living here can be. I smile, I respond “everything’s great” when asked—because, well, it’s easier! Who really wants to hear that Type 1 diabetes is draining, never ending, confusing, frustrating, sad and scary?  It is a life full of explanations about  your child’s disease- at school, clubs, athletics, church, going over to a friend’s- EVERYWHERE your child goes-because explaining is needed to keep him alive. It is watching the glazed look of confusion come into people’s eyes as you explain it, the feeling of being Charlie Brown’s teacher… “blah, blah, hypoglycemia, blah, blah, bolus, blaaah, glucagon, blah, BLAAAA.” Diabetes is the struggle to find a balance of giving enough information to keep him safe and not too much -which could make people scared to have him around.  It is the tightrope you walk while trying to make sure he is medically safe without being seen as a pain in the ass-and the fact, that sometimes you HAVE to be a pain in someone’s ass to keep your child safe.

In this vast wonderland of diabetes, parents also have to balance the lives of their non-t1d. School, soccer, music lessons, and the social life of the non-t1d are just as important as all the ‘need to knows’ for the t1d. Diabetes takes no prisoners, leaves no one in its path untouched. Diabetes causes anxiety, fears, and stress-just as much for the non-diabetic as it does the diabetic. Parents have to explain THIS at school, clubs, athletics, church, going over to a friend’s too.  There is no mistaking the fact that BOTH my kids have type 1 diabetes. One physically has it and the other emotionally has it.

Not admitting  the difficulty of parenting a T1D and the affect it has on parenting a non t1d- I guess it comes from not wanting to admit weakness. I got this, I can handle this, and this disease will not stop my children from living an amazing life-all things I want to believe, but the truth is-this disease tries, and often succeeds, at doing just that—stopping our lives.  I don’t always handle it, can’t always say ‘I got this’ because T1D is sometimes stronger than I am. 

Am I wrong to admit this? I don’t know, but man, it feels good just to let it all out! Does this confession make me a bad parent? I don’t know that either, but I think my kids need to know that sometimes even parents fall over the rocks and boulders in their way. I hope it is not my falling down that they remember but my getting up and the moving on.

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I don’t have a Mother in Law…

It’s Mother’s Day and my thoughts turn to my Mom, who was called to Heaven too soon. My Mom, Jeanne, was one fantastic lady. She raised 10 kids in a little cape cod house-which she made feel like a mansion. Mom taught me to believe all is possible, to work hard, trust in God, and she gave me my best friends-my 9 brothers and sisters. My Mom passed away a few months before I was married-sad for us-great for her, she is now in Heaven. My Mom, I know, is watching over us all.

God must have known that I was still a work in progress because as I lost one Mom, I was given another, my Mother-in-Law, Dorothy. I laugh at the name ‘mother-in-law’ because Dorothy has always been Mom-we’ve never been in-laws, always family.

family 2011 049Dorothy has been my friend, my biggest fan, my confidant, and my support. She is ‘Grandma Dottie’- Super Grandma! When diabetes came into our lives, she cared for our oldest, Rachel, while we went with Frankie to the Diabetes Center. When I had guilt and ‘bad mom’ feelings -thinking I should have taken Frankie to the doctor sooner-she built me back up, cheered me on, and just loved me through it. Grandma Dottie-Super Grandma was never afraid (or at least she never showed it!) to have her newly diagnosed T1D grandson over. She learned to give shots, do blood glucose checks, how to use glucagon, weird math, and the 1000 other need to knows about diabetes. Super Grandma even ventures out with her grandchildren to restaurants, carnivals, the mall- with a diabetes bag in hand and a smile on her face. Showing her grandkids by her actions–that diabetes won’t stop a Palladino. Super Grandma makes both her grandchildren feel special, loved, and encouraged.

So this Mother’s Day I am thankful for the Mom I was born to and the Mom I gained by marriage. I know I either need A LOT of help, or God loves me very much-maybe both-to have received the gift that is my two Moms.

I don’t have a Mother-In-Law…I have  a second Mom who is AWESOME and I love her very much!

Train is out of the station and moving fast…

IMG_3994We boarded the Type 1 Diabetes train in August of 2010. A bag full of needles, insulin, lancets, and diabetes ‘stuff’ in hand. We had no idea where this train would take us, we just knew we couldn’t get off and the ride would be forever. We are close to the 3 year mark on this train and oh the places we’ve been!

The first year we stopped only when necessary. Doctor’s visits, blood tests, the hospital. We were too scared to get off at places named restaurant, sporting events, sleepovers, and the like. Year two- we became a little braver–unbuckled our seat belts, signed up for basketball, cub scouts, went out to eat, created our awareness page, began to talk about this elephant in the room called diabetes.

As we approach the 3rd anniversary of this disease entering our lives- we see that somewhere along the way, we embraced it. Diabetes has become family. We don’t always like it, we get angry at it, but it is ours just the same. We don’t pretend it’s not there, we don’t forget about it, but we make sure that it does not keep us from getting off the train.

Our baby boy, now 9 years old, handles his own shots, glucose checks, and ketone checks. He counts his carbs, tracks his glucose numbers, has an awareness of his body and how it feels. Our baby boy talks to adults about his diabetes, stands in front of crowds to tell his story without a waiver in his voice. He sticks up for himself when people don’t get it…’Why do you have a purse?’ ‘It’s not a purse, it’s my diabetes bag’…’My so and so died from that’ ‘I take my insulin-so I’m okay’…Somewhere in the last 3 years our baby boy became a strong young man.

In three short years Frankie became the conductor, engineer, and ticket taker on this ride. The trip is not always smooth-illness, weather changes, growth spurts, you name it–so many variables makes this disease go crazy, but he navigates, changes tracks, keeps going.

The Type 1 Diabetes train is out of the station and moving fast, but Frankie is planning the course, driving the train.