For the Love of Ivey

Today, alongside many days like today, actually, if I'm being honest, there isn't a week that goes by where at least one day doesn't end with an encounter much like today - A day where my daughter and I meet someone like you.  You are the one I dread most in this world.  Let me describe this person, you - especially now that you have dissected my daughter.  There are some people not aware of their own callousness or ignorance, or level of voice for that matter.  Days like today, I get the satisfaction of someone, like you, standing within 3 feet of my daughter, in a situation where we must endure the staring and the mindless nonsense of how sorry "they" feel for "those" people - like Ivey.  They never catch onto body language, or short responses.  They, like you, completely miss my refusal to acknowledge their presence, except for my chosen short, yet, somewhat polite answers to their ridiculous questions.  Only then do I look them directly in the eye,...

Ivey turned 10 in April.  Originally, in April, I sat down to "write" some profound letter.  But as you can see, it is now almost the end of June and said profound nonsense is still not written.   Year 10 was a HUGE milestone with many many many miles under our feet, but the profound was acknowledging that we made it to some invisible finish-line I didn't even know existed. The birthday marked an actual click in my brain, a pivot, an open door of new, somewhat like the one on her first birthday. I sat down to tell you all of the many amazing revelations acquired over the past 10 years.  You know, tell you how wise I have become.  Alas, there's not much to tell unless you want to know a lot about pushing through too many hospital stays, surviving 24 hours to make it to the next sunrise and finally, just giving up the warped dream of actually wanting to be a room mom.   I have extensive lists on said topics, and then some.  But as for profound revel...

In my endeavor to expose the hidden thoughts of a mom with a child with special needs, I feel it would be beneficial to expose some of the random (and sometimes not so random) ramblings that surge through my head from time to time.  Also, I feel it beneficial to expose the same ramblings when thinking of my "typical" boys in light of living with a sister with special needs as well.  However, as the years pass, I am learning that many abnormal and weird things that boys do are apparently normal when speaking of boys.  This includes the oldest boy - my husband. Let's start by letting you know that I will label these amusing brain synapses under the tag "Musings". Simple enough.  Found under this label will be the things I often wonder, but fear to ask, or ask, and hear crickets chirping in reply. This will be the section of "Is it normal for me to wonder"........ "IS  THIS  N.O.R.M.A.L?" With Easter fast approaching, I will start with  The...

This is a preface in the somewhere middle of our story. A preface, as Paul Harvey would have said, to the "rest of the story". I am a reader.  A trait that comes straight from my mom.  Storylines along the fringes of Kathy Reichs and Harry Potter can be found in my reading stack. However, I am also a reader of realistic women.  My favorites range from Jen Hatmaker to Glennon.  I need wit and humor facing 'real' life in the trenches. But, the one book I cannot find, the one I have been in search of for many years, is the book about a  medically complicated, developmentally delayed, deaf-blind kinda family -- surviving.  Happily. I do not use the term 'survive' loosely.  Surviving comes in all kinds of kinds, with unique skills, and most importantly, the ability to flex through a range of pressure cooker temperatures.  Let it be known that keeping your nose just above the water is, in fact, surviving.  Surviving can also be accomplish...

I have said this before and here I sit saying it again, the laundry room of Scottish Rite is the most beautiful ugly place I have ever been. I think it may be the place that grounds me even more than Ivey. The laundry room is the equalizer of all equalizers. No amount of money, race, or social status exists there. It's just parents trying to get to the next day. Some praying there will be a next day. I have met some of the most beautiful people there in the laundry room. In the brief time it takes to wash and dry a small load of laundry a friendship is formed. I think the bond is already there, we just have to meet for the first time. We rarely get past first names, yet, we walk away knowing the dark scared corners of our hearts and minds. The Beautiful Uglies. We move a strangers wet laundry to the dryer to make room for our own clothes to wash. We exchange the superficial reasons why we are washing laundry together. Then we dive in without noticing. We talk abo...

and enjoy the ride. Well, Ivey had a visit with her cranial-facial surgeon today and it looks like she is ready to have the distractors removed.  Surgery is next Tuesday.  Wow.  That came out of the nowhere.  The surgery has been on the books for the end of April - for weeks. Looks like light is shining from underneath a door. This will be an involved surgery and will require Ivey to stay over in the PICU for a couple of days. Happy Easter +