I thought I'd let the dust settle from Laura's post a little before posting again. Some because I wasn't sure exactly what I wanted to say, but mostly I wanted her to get the limelight for a while. She doesn't get it much these days. Laura doesn't get much public or direct recognition for this incredible thing she is doing, this complicated and stressful raising of our son. Mostly she gets work and I get the glory.
I'm out in the world more, have more time to be connected to the internet, etc. I'm the one who gets emails and has people tell me to my face how much they love our blog, how inspired they are by what "we" are doing, how amazing they think "we" are. Each time, I try to stop and remind them how much of the credit goes to Laura, but it doesn't erase the fact that I got to hear it first.
And it's just not right.
Laura has many admirable qualities, but shameless self-promotion isn't one of them. That's where I step in.
Laura has an insane job. She typically works from 6 a.m. to 8-10 p.m. Without breaks. Without feedback. Without coworkers. Without pay. In hazardous conditions (heavy lifting, toxic waste, psychological distress). Without workers comp.
Her job duties include social work, nursing, pharmaceutical distribution, advocacy, chauffeuring, complicated mathematics (to determine calorie counts in blended food), operating heavy machinery, operating highly specialized medical equipment, preparing a specialized diet, translating medical information into plain English, occupational therapy, feeding therapy, physical therapy, medical research, precise time management, cleaning...I could go on for another 3 pages.
And she still finds it in her to be an amazing and present wife, sister, aunt, friend, daughter, niece, cousin, daughter-in-law...
Why does she do this job that none of us would ever voluntarily choose?
Because it needs to be done.
And because she loves us.
I don't know about you, but I think I'd start to crack up after 3 years of this. Laura, however, is maintaining her sanity better than anyone I could possibly imagine in this situation.
But we need help.
I need (and Laura too, though she'll never admit it out loud to you) for people to give her affirmations. Specific ones. Not, "you're such a great Mom". Like, specifically what she is doing that is making an impression on you. It can be here in the comments section, in direct emails, next time you see her, little voicemails, notes in the mail. It can be related to how she's taking care of Simon or it can be what she brings to this planet as an individual.
And I'm not talking about this being a one-time deal. This is what we need on an ongoing basis. More than food, more than birthday presents, more than any of the other things you can think of that you might try to do to help. Focus on Laura. She might squirm and try to shift the focus away from herself as the humble, slightly shy person she is, but don't let her get away with it. Hook her with a tractor beam of love and get her good.
When you're with her, ask her how she's doing. And listen. Encourage her, in whatever way you can, to talk about how SHE is doing, not how Simon is doing. Doing something almost 24 hours a day makes it hard to remember that you exist outside of whatever it is, or that you're good at anything else. Reminders of what those are would be great.
Sometimes it feels like she's this bright, bright light hidden under a bushel. Sometimes the bushel is mounds of laundry and bags of blended food and fist-fulls of syringes. Sometimes it's the errant wave of crushing depression that comes with the territory we live in. I know the song says that she's supposed to "let it shine" herself, but as someone who adores her, I think it's also my job to help the process along a little.
I'd like to vote Laura Mother of the Year and I'd love to hear why you agree with me.
p.s. If you hear of any opportunities to really vote her Mother of the Year, especially if there's a fun trip she can go on or feature story of her or some other totally over-the-top reward, by all means, share :-)
A few of my favorite pictures of my dear wife
In repose
Hunka hunka burnin love
My personal favorite. She looks demented.
Just about the sweetest thing ever
Just sort of says it all, doesn't it?
9 comments:
Laura, I admire your ability to keep up with the rigid schedule of tube-feedings and not letting it bring you down that your son is not able to eat orally. Keeping a tube-feeding schedule alone on a child without a life-threatening illness is a feat in itself, but performing this duty, while shouldering the sobering knowledge of the ramifications of Simon's illness is beyond brave. You are a hero to me and you give me strength to shoulder our Cardiomyopathy burdens. Please know that there is a mom in Wisconsin who loves and prays for your family daily.
Love,
Jessica Marschall-Wisconsin
Well if that isn't just the sweetest love letter ever, I don't know what is...
Laura, I am amazed that you have someone who adores you so completely. Not everyone has that in life, and I love it when I see true love in another couple. You're doing an awesome job taking care of that little guy. Don't let anyone make you question your heart when it comes to him.
Here's the thing about Laura: She's got this center, this core Laura-ness that is totally swoon worthy.
One bat of the eyelashes along with a clever thought (she has lots of them) and a baudy laugh (also? has a GREAT laugh) and WHOOSH, all you can think about is how AWESOME this woman is. How lucky you are to be in her presence. And how mightily you'd like to weasel your way into her heart.
Laura Fitch? I admire you like no one's business. And that was before we met Simon. Now? I'm over the moon with admiration.
Sending love etc. to you.
aimer and Laura-
Molly and I were honored to be asked to even let you know what we
think. So my take as your boring 59 year old crazy ass uncle who loves
you both more than you can ever imagine? This is something I relate to
totally. When Molly and I first had kids (the wonderful Mr. Willoughby
and then the fabulous Ben and Kelly) Molly at some point began to feel
that there was a whole set of conflicts on her about her value in
life. She loved being a mother, she was incredibly good at it, but she
also wanted to have a life and also contribute financially to our
family. What a mental stew! So here is what I said to her as her
husband and the one who loved her more than any other. First, our kids
need two parents who love them. They really don't care what you do or
how you define yourself. All they care about is that you love them
unconditionally, tickle them, read to them, show them the wonders of
the world and ENJOY them. And I love you Molly because you have done
that. You have given them all your love and wrapped them in it and
protected them from all the world. Second, our kids need someone to
show them how to love life, how to learn, and how to accept all the
crazy signals they get and how to grab life by the (choose one
socially acceptable scatological analogy). I can't do that 24/7
because I am out doing the boring shit of making money to pay the
rent. You have the higher calling of being the filter for our child
for the world and also for giving me the chance to be with them when I
can so that they are fed, clothed, wiped and dry, and generally happy
and can accept my transmissions for what they are worth.
You know the main thing Molly said to me? "I feel bad that you make
the money and "all I do" is take care of our kids". You know my answer
to that? It is worth a gozillion dollars to me that our children have
someone who can look in their eyes and let them feel the love, that
are totally dedicated to them, and that would lay down their lives for
them. That is so valuable- our society does not value that incredible
value of a parent (mother or father) who showers and shields their
children with love. That is totally priceless. That is worth
everything.
OK so what is the downside? When your job is to "take care of the
kids" society and your conditioning assigns that almost zero value.
You must be a dynamic successful career person...you must do this and
that. Nothing you can do in a job will have more impact in the future
of the world than showering the people you love and your children you
love with love. That is ALL that matters. Shift your gears, darlin'.
You have the toughest least rewarding job in the world. And you ain't
hit the teenage years yet. Oh yeah and good luck on that, but I know
you will do fine.
All love to you both,
Uncle Jon and Aunt Molly
You r so terrific I'm going to thank u for simon me poppop. THANK U for your * energy *devotion *care *procedures expertise *driving skill *musicology *storytelling & *complete luv
I could seriously go on & on ... I LUV U mm&pp
Dear Laura,
I wanted to let you know how brave I think you are. On this blog, you let us readers see it all--the grief, the rage, the sadness, the pain...and the moments of, yes, joy. I can only imagine how difficult, and how liberating, this radical and unflinching honesty must be. And I hope you know what a rare and precious gift you give your readers, with your willingness to speak the truth of your experience. This is powerful, and so are you.
Much love to you, Jaime, and Simon!
Dear Laura,
You are an amazing human being. I know, because I, too, was nurse, tube operator, oxygen supplier, PT/OT, calorie counter, eating-by-mouth cheerleader, laundress, cook, maid, vomit-catcher, thinker of oh-god-what-if-the-only-thing-my-son-ever-ever-puts-in-his-mouth-for-his-whole-entire-life-is-friggin-cheezy-poofs. My son (complex CHD) finally figured out the whole eating-by-mouth thing around age two, and was off of most meds by age 4. It took everything I had to get to 2 years, and I can’t imagine what I would have done if I’d had to keep up that pace! You are awesome. You are saving your son’s life by what you do every day. I wish for you to have more time for you – to remember who you are and what you want to be, and then to come home to your darling precious boy and get giant hugs.
Love
Laura, you are an amazing loving human being. You give so much of your intelligence and thougt to your family now, and they need it, but you also need to know that the world is inspired by who you are being in this tiny complicated and basically sick environment. I wish we could take a magic wand and make Simon all better. If wishes were horses then beggers would ride.
ride on.
you rock
Nola
Laura, We have missed you and Simon at Swim and Gym and I think you are amazing because you are so very positive. You have a unique perspective and you always seem to calm and collected. When the rest of us are riled up or over worried you point out something amazing that we have not thought of that shines a light on the topic and makes things just a little bit clearer. Thats not to say anything about what a great mother you are besides!
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