Sunday, January 27, 2013

Wings Gala speech, Jan. 25th 2013

I wanted to tell you that before I came to the Family Center I had two friends. Two friends in which to share the monotony of new motherhood. Two friends to plan play dates and tumbling classes and swimming lessons and movies for moms, anything to get through the days while our husbands went off to work. Let me tell you it got awfully lonely if one of my friends was out of town and the other had sick children.
I was Home. Alone. With my child. For eight hours…

Then I had my second boy, Dermot. In the beginning he had, what I like to call now, some “minor” health issues and my two friends tried to support me. Three months after he was born we moved to Edina, to a house that had more than two bedrooms. I decided to keep my oldest son in preschool in St. Louis Park in order to stay connected to my two friends.

Then, at four months old, Dermot had his first seizure, and that changed everything.
You see when a child has a seizure and goes to the ER and stays in the PICU for three nights, he is automatically referred to an agency called “Help me Grow” for an assessment to check his general development. Through a series of appointments and assessments with the fine ladies of Edina’s Early Childhood Special education it was decided that Dermot needed extra help to meet his developmental milestones. Dermot’s teachers came to the house every week and spoke very highly of the family center for Owen. And I listened.

I had missed the ever so important registration deadline so most classes were filled. We managed to get a spot in a hand-in hand class for three year olds, and so began my journey at the Edina Family Center.

I continued the next year with Teacher Sue Ellen’s class and started my first parenting class. By that time, I’d had ANOTHER baby boy and my second son was receiving the maximum services from the school district. We had been told by his doctors that he would never walk or talk, he would be different. What I heard was: I WOULD BE DIFFERENT.

So at start of my first parenting class, it was me, Kris and eighteen other moms. Moms, whom I thought, were very different than me. They could not know what I was going thru. I told myself they wouldn’t understand. I spent most of that class feeling apart from everyone else.

Now, four years later, I am in Kris’ class again, and there isn’t even a moment of feeling different. I share my story openly and honestly. I credit the fact that I can do that because of the moms in this community, we call THE FAMILY CENTER. So KIND, so ACCEPTING, so eager to help.

I’ve taken three other parenting classes between my Kris S. classes and each experience has taught me more. I cherish my time with Kelly, Sandy and Kris a great deal. This “MOM NETWORK” is like nothing I’ve ever experienced before. These moms offer kind words, no judgement and help other moms however they can.

They’ve taught me that yes; I am a special needs mom. But I am also a hockey mom, a soccer mom, a minivan driving mom, a running mom. I am a mother just like all of you. I’ve tackled some very extraordinary circumstances, just like you would if your child needed you.

I still struggle to get my picky eater to eat something, ANYTHING!  I cheer when my son scores a goal at hockey. I complain when my little one keeps waking up in the middle of the night.

All of you remind me that I belong here; with ALL the other moms and that everyone has their own struggles and triumphs to experience. The best part about the Family Center is that we do all of these remarkable things TOGETHER.

So because this is my last year at the Family Center I’d like to close by thanking all of the teachers, staff and parents that have made an impact on me and my family.

Thank you to:
Sue Ellen

AND of course the fabulous women from Early Childhood Special Education:
Jan, Kate, Jamie, Anne, Katherine, Joan, Megan and Sarah.

Thank you, I carry all of you with me wherever I go and I no longer feel APART from you….

Monday, January 21, 2013

Young grief

Grief in an eight year old:

Two days after the funeral he had rubbed most of the ink off of the wristband he received at the funeral.
Got almost frantic when I told him I couldn't fix the wristband, then calmed down when I agreed to give him the one I got.
Gave me several unasked for hugs when he noticed me crying at the dinner table, at church on Sunday and while reading him a book.
Asked to read his obituary in the paper, again.
Asked why his heart stopped beating.
Read the article about his friend in the neighborhood newspaper and was comforted by the fact that his favorite team was Notre Dame.
Listened while his friends at swim practice talked about "the boy who died", didn't share with us what they'd said.
Spent a few nights out of sorts, almost crying, almost yelling.
Made sure that the green #7 sticker was placed correctly on his hockey helmet.
Wanted to know if he'd been to any other funerals when he was younger.
Seems to be hugging his brother Dermot an awful lot lately.

Two weeks so far.

Friday, January 11, 2013

An explanation

Cathartic: producing a feeling of being purified emotionally, spiritually, or psychologically as a result of an intense emotional experience or therapeutic technique.

That is why I write.

I’ll admit when I first started writing it was to inform family and friends about Dermot’s health and hospital stays so I didn’t have to repeat painful information over and over, but at some point my blog morphed into a vehicle to process my thought and feelings.

Yesterday I went to the funeral of a friend’s eight year old boy. He died suddenly and quite tragically. Yesterday I posted my heartfelt experience of his funeral and the happenings that occurred at the funeral. As with most people this was the most difficult event I’ve ever experienced. First because he’s eight years old and we knew him. We saw him often and our families have a connection. I know I don’t need to explain the relationship we have with the family, but because of some criticism I received over yesterday’s post I feel that I must. Secondly, I know with some certainty that I will be in the same position as my friend someday. Because my son has profound disabilities, I am glaringly aware that I will most likely out live my son.

I’ve been in the ambulance with my son, rushing to Children’s hospital. I’ve run through the automatic doors close behind the EMT’s while they rolled Dermot into the ER. I watched helpless in the corner holding his clothes while at least ten medical professionals tried different options to try and stop his two and a half hour seizure. I’ve looked into the eyes of a trained professional while listening to him tell me that they are doing everything they can to help my son. I know that terror; I live with that every day. But the big difference being, I got to bring my baby boy home, alive.

 So I don’t know the terror of watching the life slip away from my son’s body. I don’t know the gut wrenching pain of sitting next to his coffin while every single person he and I have ever known comes to say good bye to him forever.

But I imagine it. I imagine what music will be played. I imagine who will be at his funeral. I imagine the numbness of the days and weeks after. I pray that I’ll have the strength to get out of bed each morning for my other boys. I worry about how it will affect their lives. I wonder who will show up to support me and my family, because I know it will likely be people I never expected.

That is why yesterday, I was watching every detail. I had my eight year old count every green balloon on the way to the church. I watched how the oldest brother’s hockey team showed up and stood tall. I watched all the little children cry one minute and play with their friends the next. I watched the all the parents touch one another and talk. I took note of the beautiful creative program that the little boy contributed to without even knowing it. I wondered if the musicians were professionals or friends of the family. But most importantly I watched my friend, the mom. I watched her walk thru all of her pain, sometimes composed, sometimes not. The beauty of falling to pieces was not lost on me.

I admire her grace from now on. I pray for her and her amazing husband and sons. I will continue to watch them as they go thru the journey of grief and emptiness. I will learn from them. I know with God’s grace they will learn to live again. I know they are changed forever.

As a footnote: I have removed the post (An Eight Year Old's Funeral) from yesterday with fear that it may have been too personal for the family. I've saved it, and will keep it because I found it very cathartic to write.