Confessions of a Worry-Mom

I left McDonald’s, I got in the car, and I cried…..

The emotions have been mounting. For so many months they are there ….right on the edge….poke their head out and just as fast hide again because it never feels like there is enough time or energy or strength to deal with them all coming out.

A week ago Peter was in the hospital, again. The times are a mixed blessing of being forced to slow down and just be with Peter, and a stark reminder that he is fragile – very fragile. Sometimes when he sleeps I just stare at him. I am thankful for each breath he takes. I think of what we need to do. I think of what we haven’t done. I think of what I wish we could do. Then I stare at Peter again and I am just thankful.

John and the kids left for Montana. Peter and I are at home. I worry about Peter getting sick. I check his breathing in the middle of the night. I worry when he goes for long stretches of not wanting to eat. I worry about G forgetting who I am in the days they are gone. I worry about their safety on the road. I worry about Tommy and Jack and Michael and Alexandra. I worry about John. Yes – I worry! And through it all I often worry that I am just not doing enough – or at least enough of the right thing – and I feel alone. I have heard it before – give it up and trust – I can’t fully and fairly and unemotionally answer that today.

Last week a FB friend posted that her 7yo daughter tested as a 2yo in certain areas. She declared that she felt like she had let her daughter down. My instinct was to write words of comfort – but I stopped myself. At some level it felt hollow – a “do as I say, and not as I do” moment. I worry about letting down all my kids every day! Who am I to deny her those feelings when I feel them every day?  I wish I could take them away. I know at many levels I am not alone. We are not alone. When Alexandra was a baby I muttered something like “I can’t wait until she is a little older and I don’t worry as much”. My mother chuckled one of those full of wisdom chuckles. Simply told me the worrying never goes away – even when your child has left home you will worry. It is what mothers do.

With Peter I worry extra. I worry about what I should teach him. I worry about what he will be able to learn. I worry about his health – a lot. I worry about his future. Sometimes he stands a certain way, says a certain word, or makes a certain movement and I get a glimpse of what he may be one day – and I worry I am not doing enough by any stretch of the imagination to allow him to make his dreams come true. But through all the worry I see Peter as this gorgeous little boy who knows just when to give me a hug.

Inclusion:  the act of including or the state of being included. For parents of children with special needs inclusion is a big word filled with many rules and guidelines. It tells us that by law our children should receive the least restrictive education. Our children can be included. Today was a lesson for me on inclusion – a tough lesson. All the rules and guidelines and laws in the world will not teach including. There is inclusion, and there is including.

Many years ago children like Peter were locked away and forgotten. In parts of our world they still are, sadly. Here, today, children like Peter come home, are loved, are educated, have opportunities. They have “inclusion”. I see Peter through my eyes and I hear about Peter through the words of those close to him who care for him – family, friends, nurses, doctors, therapists, co-workers. I feel like Peter is included. I had a false sense of security that others see Peter as I do.

Peter is on a diet again. I can’t think of the last time I have gone to McDonalds but for a late night chocolate chip cookie run. I decided to give it a try today – maybe fries, chicken nuggets and milkshake would get some calories into Peter and fuel his eating. As I walked into the play area with Peter I saw other parents stare. I smiled. No smiles back. Some were chatting as they walked around tracking their kids. I walked around. No words. No smiles. A few glances but mostly the avoid-eye-contact movement. No success with the eating but Peter bravely took off into the play structure. Not always graceful but I was proud of him for going in and out and exploring – way to go Peter!

Then came the Queen Bee – you know who I am talking about. The young pretty girl who will not grow up to be a wanna-be. She spoke to me a couple of times with words of wisdom about the play set and kids. Then the words “Peter looks…hmmm….funny”. The awkward moment of finding a word other than “weird”. “Really?” I said, “I think he is very handsome! He does have that bruise on the side of his nose – but I still think he is very good looking!” Peter looked at me and I saw this short, stocky, awkward kid with one eye that likes to roll towards his nose and a floppy ear smile up at me. She gave me that look that said ‘You are an adult and I have to tell you!’, then she said “He looks funny, there is something wrong with him and his eyes”. Sigh. As I was mustering some words of wisdom, Peter looked at me again and said “Done!” and started to walk out.

We left McDonalds, we got in the car, I cried…….for just a few seconds, but it hurt!

Inclusion – an act or a state? I would argue today that an act or a state is not complete with out the true intent. I don’t fault the girl for noticing that Peter is different. I don’t blame the parents for being uncomfortable – I am sure before Peter I was one of them, uncertain on what to say or do for fear of being offensive. But now I see it through the eyes of Peter’s mom. I don’t know what he thinks when he waves at people and gets ignored, I don’t know how he feels when he tries to include a child in a game and they say NO and push him away. I don’t know. But I know how I feel, and it hurts.

I am used to seeing Peter surrounded by those who know him at some level and who care for him. Inclusion starts at home. Peter is surrounded by parents, siblings, family and friends who include him. Today I saw Peter through the eyes of children – like those in his class this Fall – who may avoid him. Through the eyes of parents – like those of his future classmates – who rather not make eye contact. All my worries from the years before the cancer are back. Will he make friends? Will he get invited to birthday parties? Will he have sleep overs with a best friends? Will he be included as much as he tries to embrace those around him?

Inclusion started at home when families embraced their children with special needs and brought them home. Inclusion spread when families advocated for their children and law makers created rules. Inclusion grew as teachers learned what it means to teach children with different abilities. Today I learned that to truly include someone – that act of including – is as much action as it is attitude. We’ve come along way from buses with seating areas based on color. Many get on buses today and don’t think about the color of those around them. I pray that in my lifetime we go from the action of inclusion to the attitude of inclusion.

So what was next? I drove around feeling very lonely and not sure of who to call as I just needed a shoulder to lean on. Everyone has issues and it felt a bit like a pity party. Instead I took Peter to get a much needed haircut and then to the park he has been pointing at during our evening walks. Yes, he is awkward, looks different, somewhat uncoordinated but his a killer smile and great hugs. As he “ran” towards the play area there was a family sitting there. They smiled. And when Peter stopped long enough to look over his shoulder to say “Mama, come on!” they smiled even bigger.

Yes Peter, as long as you invite me to come along, I will! Thank you for holding my hand when I need guidance, giving me a hug when I feel lonely, including me in your adventures!

Mama says I look like TinTin now…..I’m just happy the iPad didn’t go to Montana!

xoxo

Catherine

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6 thoughts on “Confessions of a Worry-Mom

  1. Sorry if this is a duplicate; I tried posting before without success.
    In the movie “Temple Grandin,” Julia Ormond plays Claire Danes’ (Temple) mom and tells her teacher that Temple is “different, not less.”
    My sister knows a man who was badly burned by a campfire at age three and suffered significant facial scarring. When he started school, his mom talked to the teacher who explained his situation to the students. He says no one ever made fun of him, and he attributes this to the way his kindergarten teacher handled it.
    The pretty little girl at McDonalds can’t help it that she’s pretty and is probably not well-served by stereotypes about what becomes of pretty girls as they grow up. I think her curiosity and questions are appropriate and natural. Peter does look different and is disabled. Downs is not something to be ashamed of; it’s just the way he’s made. I think if she and other children are informed about the differences instead of being made to feel naughty for acknowledging them, Peter is far more likely to be accepted and included.

  2. First of all I want to be very clear that I am not ashamed of Peter in any way, shape, form or another! Our conversation will not work if your premise is that I am – and I am saddened that you would think that of me. Honestly that is the most upsetting comment I received and I hope that I simply mis-read the intent.

    Peter is amazing and I wish the world were filled with more people like him. Unfortunately most babies like Peter are aborted because we do live in a world that is not curious but rather judges. He is considered lesser than, a hinderance, a nuisance, a burden on society – something to be feared and avoided as would be testament the millions of dollars that go into identifying babies like Peter so they can be terminated.

    Having my other children go through many years in school, I have observed enough kids to know some indications of behavior and actions that help discern curiosity from judgement. At no time did I attempt to make her feel naughty for commenting on Peter. I would have taken the time to talk to her had I had it – but Peter decided it was time to leave. I understand kids are curious – mine have at time asked questions that have made me cringe. As adults we have the responsibility to model appropriate behavior – and avoiding, ignoring, taking kids away from someone with Ds or worse yet making mean remarks just loud enough to be hear is not appropriate behavior – and in Peter’s short 5 years I have experienced all of that and much more. Including “kind hearted” individuals who let me know I had a social responsibility to abort Peter since I had a prenatal diagnosis and it was ignorant of me not to have terminated his life.

    The world is safe in the immediate surroundings – it is less so the further away you get. Not all teachers are like the ones you’ve described. My kids have had good and bad – and that goes for all of them. Including a teacher who sent Peter home almost every day for any excuse under the sun because she honestly did not want him in her classroom.

    Life has not been with out challenges and opportunities for both of us – and while I don’t expect either of us to fully understand the journey the other is on, I ask that if nothing else you take away from this that my hurt comes from a place of loving Peter more than I thought possible and wishing for him, as I wish for all my kids, good health and faith and happiness and good friendships.

    catherine

  3. I had to cry reading your post tonight, Katherine. I will never know what your family deals with day in and day out, but know, you guys are a frequent conversation at our house. My kids are always asking how Peter is and how the family is doing.
    I think more kids need to have one-on-one encounters with children that are “different.” We live in a culture of perfection and all too often, when our babies aren’t perfect in the womb, couples make the horrid dicesion to terminate. So many “Peter’s” have not graced our world because they weren’t the “perfect” child their parent’s invisioned.
    Knowing Peter, the times I do get to see him at Mass, has brought such blessing to me. His observance of the world opens new windows for me to things maybe I overlooked because I’ve seen or heard them a million times. Seeing the world through the eyes of a child, any child, is such a gift from God.
    His hugs are wonderful!
    Thank you for sharing your trails and tribulations.
    God Bless you and the family,
    Michelle Ihlefeldt

  4. i hope to meet your beautiful peter-bear someday. when i look at the pictures you post of him, i really don’t see a “down’s syndrome child” in front of me, i see this adorable, innocent, life-giving baby boy who is so so adored by his mom and family. his smiles KILL me!!! i don’t know if i’ll ever relate to the challenges you have to experience as a mom, but as a mom myself it breaks my heart when i read what you have to deal with. i would not be able to handle the judgment and awkward stares with as much grace as you. you are incredible and strong and beautiful (both inside and out)!!! i admire you so much and i tell all my friends about how fortunate i am to work with such an amazing person (i’m talking about you!!!!).

  5. I cried when I read your post. I have a post that I am almost ready to publish titled, “I see you”. I talks about the very things you are talking about here. I hear you, mama. And I know that even know it’s hard you wouldn’t trade your sweet boy for anything in the world.

    I moved to the Springs in January. I can’t wait to meet you and your family!

  6. Pingback: Ds Awareness Day#12: Inclusion…beyond the classroom. | krause bears

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