Thursday, October 22, 2015




What I Wish Had Been Said To Me When My Kids Were Little...

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    Sometimes, I have a dream of myself much younger sitting on a bench at the park watching my boys trying to climb the stone whale to get to the water fountain at the top. They are young and active and so cute! And the me I am now comes over and sits down to talk, to tell me things about the mother I am becoming. To tell me about being a mother who is chronically ill.
    But I have no flying blue time machine, yet, so I will tell you what I wish had been said to me when I was younger. When my boys were toddlers. Maybe I would not have felt so alone back then. Or so wrong and inadequate. Back when I struggled every day to take care of my boys the best I could, second guessing myself every night. Because that’s what you do when you are chronically ill and have children.
    I want to tell all the moms out there who are chronically ill, in pain, or disabled what I wish I had heard because I’ve been there. And I know. And you are not alone.
     I’ll start with the basics. Housework. I don’t mean get your spouse to take care of it all-not that someone shouldn’t help out so you can rest. No, I mean the idea that clean isn’t everything. I understand that with kids in the house, there is a certain level of cleanliness that has to be maintained. And that is fine. But believe me, if the toys stay on the floor another day so you have energy to read that bedtime story, so be it. If the towels don’t get folded and put away, no one will notice. I used wrinkled towels out of a clothes basket for years. (The wrinkled shirts didn’t go over so well) There is no perfection in life and living with an unpredictable, chronic disease means never knowing when or how it will strike. Pick your housecleaning battles wisely. Time with your family is more important than dust on the coffee table. Kids can draw in dust!  And tomorrow, you may feel better.
    Also, magazines tell you to save time by putting together activity bags for kids for a rainy day. I say take it one step further. Invent activities that allow you to be sitting or lying down to be involved. Games like sock golf (no clubs-9 paper bags on the floor), camp out (yeah-in the living room. I napped), or color clues (I drew clues they had to color in to find the next clue and eventually a treat). My kids became experts at card and board games because I could play laying down. And don’t count out the movie marathon. Your kids won’t be ruined by a day of snacks and movies under the blankets cuddling with you because damnit you’re just that sore or tired. I can still quote The Mystic Knights and sing Elmo’s Song. Your kids want your time, not your physical prowess and there will be days you can take them to the ballfield!
     Most importantly-your children don’t know you are sick. Not really. Sure, you tell them. I did. To explain why mommy can’t take them to the park today or why mommy is on the couch again. They may even complain about your illness getting in the way of things they want to do. Children are great at playing the guilt card. But they don’t really see you as sick. They see you as MOMMY. MOMMY who may be sick sometimes, but MOMMY. And that makes you the most important person in the world to them and they love you for it. No matter what. So although you may think they see you as sick mommy, when they see you, all they see is L-O-V-E.
    The proof? My kids have never known me healthy. I was diagnosed four months after my youngest was born. I have never had a really clean house. I let them down by making well intentioned promises (just don’t) and being too sick to keep them. Yes, I managed to go to most of their baseball games, but at a cost and always covered up from the sun and with an umbrella. (Quite the embarrassment) And they never brought many friends over.
    But now? They both have full time jobs. They bring friends over. A lot. And I hear them defending me if I’m laying down-again. They get upset if they see me trying to do something they think I shouldn’t-whether or not I feel good that day. They protect me. They see beyond the physical and have all their lives. They have never judged anyone and have stood up for those with disabilities at every turn. And  my extremely shy 19 year old kid, who hates talking, took the phone from me during my disability interview to explain what kind of person I am and what kind of mom I’ve been and how much he sees me struggle even though I won’t admit it.
    They work hard, they play hard, they get dirty, and they truly care about people. This is what they learned growing up with a chronically ill mom.

    So, newly diagnosed mom, your instinct may be to feel like a bad mom or like you are simply inadequate because your house is messy or you can’t go for a walk with your kids today, but I am telling you that that is very, very wrong. You are exactly enough because you are MOM and you are awesome!