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Remember This Day
Every year, on February 4, our family celebrates the day that Hugh was diagnosed with Type 1 Diabetes. It’s a little strange, I’m sure, to you non-diabetic families, to celebrate a day that brought us such an awful diagnosis. But I guess I should say that every year we celebrate the day that Hugh overcame his diagnosis of Type 1 Diabetes.
February 4 – on that day I thought our normal life was over. At least the only life I had ever known with two small children would be over. No more spontaneous trips out of town. No more carefree meals with friends. No more going anywhere without supplies and food. I thought Diabetes was bondage – a slavery made out of blood sugar numbers and insulin shots.
And it was bondage, for a long time. The days were an endless nightmare of holding my son down to give him another shot and him telling me he hated me every time I did it. There were so many tears, so many nights where I didn’t sleep at all, so many angry remarks to God about the pain and the unfairness of it all.
I wish I could tell you that one day it instantly all changed and I realized how fortunate we really were. But it didn’t happen in just one day. Little victories weaved together over the years to create this new normal for us. One night I went to a party and didn’t talk about diabetes at all. One day Hugh checked his own blood sugar without my help. We went out to eat at a restaurant and I didn’t panic when it was time to order Hugh’s meal. We took a vacation. We sent him to school. We laughed again.
And now the impossible has happened – 5 years have passed and we are doing ok. No, we are doing more than ok. We are happy. We are surrounded by the best friends and family, Hugh loves school, his sister takes care of him with the fiercest kind of loyalty, we take those trips and have those dinner parties and love the life we have been given.
So on February 4, we celebrate. We celebrate with a meal. Not anything special, but we always eat together. I usually buy cupcakes or a favorite cake and get Hugh and Amelia a little gift. I tell Hugh how proud we are of him and I tell Amelia what a great sister she is to Hugh. It’s fun to celebrate together and talk about the progress we have seen over the years.
And yet, and yet . . .
I remember the day.
I remember the panic and the fear. I remember the rush of throwing clothes in a suitcase to get to the hospital as quickly as possible. I remember not having the words to tell my son he was very sick. I remember hugging my baby girl good-bye and not knowing how many days I would be away from her. I remember not knowing what to feed my own child for fear of killing him.
I remember the bondage.
I cry the salty tears.
I taste the bitter herbs and they burn as I swallow.
I eat with haste, with my travel clothes on and my staff in my hand.
That night, every February 4, is my Passover meal.
Why do I have to remember? Why do I re-live the pain of that day?
Why can’t God allow us to forget the pain and the hard days, and just live in the present? Why does he require a Passover meal?
Well, I’m obviously not God, but if I had to guess, I think it would be because of this – First, God wants us to remember the bondage so we can remember who rescued us from it. He wants us to remember that He is loving and caring and there is nothing more that he wants to do than to save us, to bring us out of that place and into the land of milk and honey. He is there and He is waiting with His hand outstretched, ready to grab hold of us and never let us go.
But second, and possibly even more importantly, I think he wants us to remember the bondage because he wants us to see it in others.
Maybe if we forget our slavery, we will not have the eyes to see it in this world. Maybe if we don’t think about the most difficult days, we don’t remember how hard it is for some people in this very moment. Maybe if we dismiss our pain, we will never have the compassion to reach out a hand to the suffering, the hopeless, the dis-heartened, the least among us.
Maybe if we don’t celebrate Passover, we don’t invite others to the Feast.
For we all have been in bondage. We all have been broken.
I’m not sure what your Passover meal looks like, but I bet you have one too. I bet there are times when you remember the pain, the sadness, the grief. But I hope you realize, as I have, that there is a beauty in our Passover meals that we would never have without the bitterness of our tears. I hope you remember who brought you out of the house of bondage. And I hope you remember to invite others to the Feast.
“And Moses said unto the people, Remember this day, in which ye came out from Egypt, out of the house of bondage; for by strength of hand the LORD brought you out from this place: there shall no leavened bread be eaten.” Exodus 13:3
Help for School
I have had several questions about how we work with Hugh’s school and nurses concerning his Type 1 Diabetes. I would like to share where I got many of my ideas.
One of the main sources that I went to for school information was the D-Mom Blog. This mom has wonderful ideas about how to work with school staff in a cooperative and respectful way. Her book, KIDS FIRST Diabetes Second, was also a great resource for me when Hugh was first diagnosed.
Another mom that I follow closely has a blog entitled The Princess and the Pump. This mom is also a teacher, so she has lots of great ideas to help with diabetes at school. The Diabetes Fact page that I pass out to all of Hugh’s teachers comes directly from her, and I have found it extremely useful.
Of course, JDRF has many resources for parents sending their children to school for the first time with Type 1. This organization will send a free school kit to anyone who requests it, and I have used it many times when connecting with teachers and school nurses.
The most important thing that I try to do, however, is to make a personal connection with Hugh’s teachers, nurses, and the support staff at his school. I realize that being a teacher is a hard, emotionally and physically taxing job (thanks to the fact that I am also a teacher and come from a long line of teachers). I am aware that Hugh is not the only child with special needs in the school and I am never demanding, rude, or threatening when dealing with anyone at his school.
No one deserves to be treated with disrespect, especially the people who are taking care of my child. Ever.
They have a difficult job in general, and taking care of Hugh does not make it easier. I support his teachers in any way I can, and I always make it clear that if something is not working for his class or his teachers, we are flexible.
The bottom line is, we WORK TOGETHER to do what is best for Hugh!