Women Who Inspire Us

Women Who Inspire Us #5: My four-year-old daughter

Today’s post is the fifth in the Women Who Inspire Us Series.  You can read the previous posts here.  You may also want to subscribe to my RSS feed, or “like” my Facebook page to catch the upcoming posts.  As always, if you would like to share your inspiration by participating in the series, please contact me.  There is still plenty of time to be involved!

“Sorted Megablocks” is the mother of “Fred” and “Wilma”, four-year-old twins with various developmental delays and disabilities including hypotonia, speech delays, autism spectrum disorders, and ADHD.  She has just begun blogging at http://sortedmegablocks.wordpress.com.

Who is a woman you find inspirational?

She’s not (yet) a woman.  She’s my four-year-old daughter!

What is her relationship to you?

I would say she’s my daughter, but really she’s a piece of my heart and an enormous project I’ve taken on.  From the day she came home from the hospital at three pounds, four ounces and had to be held a specific way to take feedings by mouth after having been on a feeding tube, to the moment she was already in special education, physical therapy, occupational therapy, and speech therapy at age three.   Even with that hectic schedule, we were beginning to feel it still wasn’t enough.

She has spent more time undergoing therapies, doctors’ appointments, tests, x-rays, EEGs, bloodwork, MRIs, psych consults and medication trials than she has in playdates and swimming pools.  When I tell her we’re going on an adventure this week (referring to a playground or a trip to the library), she asks which doctor we’re going to see.

When you first meet her, you don’t immediately see her special needs.  Maybe after spending a few minutes with her, you may realize she is a bit more hyper and talkative than other four-year-olds.  What you don’t see is all of the underlying diagnoses that have layered upon each other over time, creating a very unique individual with an incredibly optimistic spirit.

I look at children with intense medical problems and obvious disabilities and feel sad imagining what their life must be like and feeling like we have it a thousand times better.  On the other hand, “Wilma”‘ has been through a lot on her way to a proper diagnosis.  She didn’t come out with any obvious characteristics of any one developmental problem.  I am blessed to be Wilma’s mother so that I might learn patience, behavior management, and above all, optimism.  Wilma sees the glass as half full- ALWAYS.

Where did you meet her?   When did you meet her?

Most people become pregnant the old fashioned way.  I got to meet her as I was undergoing in vitro fertilization.  She and her twin brother were embryos being implanted in me on a Friday morning in May, 2006.  It was fascinating to watch it happen on the screen as I was undergoing the procedure.

What is inspirational about her (it can be more than one thing, i.e. personality, actions, overcoming hardships)?  Can you share a specific memory (or more than one)?

Her love for life is truly insatiable.  I can’t think of any other four-year-old who would get extremely excited over an x-ray or an MRI.  Whether it’s a plagiocephaly helmet, foot braces, a compression vest, an IQ test, hernia surgery,  or being observed by fifteen teacher training students at an autism conference, Wilma always has a smile on her face as she’s being greeted with the unexpected.

She’s proud of her achievements and skills, even when they come months or years behind her peers’ milestones.  She learned to jump two years after her twin brother did.  Each of her first jumps were accompanied with a giggle, a smile and an “I DID IT!”.  She is now working on learning to use the potty.  Each time she uses the potty, she has this sparkle in her eye and an infectious giggle as she looks into the potty to make sure it’s there.  You just have to smile!

Once she tackles a new skill, she practices it over and over again until she gets it right.  She learned to gallop and now you can hear her constantly galloping all over the house.  She learned to write her name and you see letters of her name written randomly all over my junk mail, the magnadoodle, coloring books, preschool papers, anywhere!

How has this inspiration affected your life?  Do you think it has made you a better person?  How so?

She has forced me to become an expert on hypotonia, ADHD, PDD-NOS, behavior management, appointment scheduling, toddler social skills, applied behavioral analysis, and a host of other interesting topics.  I’m someone who enjoys learning new things, so joining support groups and talking to moms with similar situations has broadened my horizons and has helped me to parent this unique and wonderful child.

When do you find yourself thinking of this person?  How do you feel when you think about her?

I feel happy when I think of her.  She inspires me because despite her challenges and difficulties in managing herself and expressing herself, she is such a happy girl with so much love in her heart.  The funniest things naturally come out of her mouth even when she doesn’t intend to be funny.

On bad days, it’s easy to feel sad.  Here’s an almost five-year-old who is not yet potty trained and cannot dress herself.  She may never run normally, and staying in context in conversations will always be a challenge.  But it’s very difficult to remain sad for long with her smile brightening the day!

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