advocacy · siblings · Uncategorized

I See You Too, Sibling

Dear Sibling of a Child with Special Needs,

I like to see the bright side of things, and that means for you too.  When you say you’re more resilient than your friends, I think “Yeah, that’s right, that’s from all the crap you’ve been through!”

Then I think about it.  Man, you have been through some serious crap.  Of course you’re resilient, resilience is a matter of survival.  You’re more empathetic and certainly more accepting of people from every possible background, but of late, I’ve been wondering about the cost.  You had no say in this, we’re just the family you wound up in, but I want you to know that we see your struggles.

When people at your school use the word “retard” and don’t understand why it bugs you, we see you.

When you feel like we don’t have the time or energy for you or your problems, we see you.

When your friends have no idea what your family or Down syndrome or autism or cancer are like, we see you.

When we miss your school events because there isn’t enough of us to go around, we see you.

When you feel like all of our hopes and dreams for a typical child are your responsibility to fulfill, we see you.

When your siblings meltdown in public and it feels like there’s a giant spotlight on our family and the whole world is watching, we see you.

When you’re shoved to the back burner, even on your own special occasions, because their needs are constantly pressing, we see you.

When every single holiday and special occasion has to be planned around them instead of you, we see you.

When emergencies happen and we expect you to take on adult responsibilities at a moment’s notice, we see you.

When you’re bummed that we don’t want to go out to do “normal” things as a family because it’s just too much effort, we see you.

When I’m busy on the phone and email day after day and it seems like I’m a full time case manager instead of a mom, we see you.

And I want you to know how much I admire you when you rise to the occasion, which you so often do.  You are resilient, and that makes me so very proud.  And I want you to know that when you feel sullen and frustrated and invisible, that I get it, (even if I get frustrated back).  I want you to know how valuable and wonderful and beautiful you are.  I want you to know that you matter, even though I’m often too frazzled to show it.  I want you to know that I see you and hear you and love you.  I wish I showed it more and I wish I showed it better.

 

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Sitting on the Porch Swing

The life-affirming heat of the sun is scorching on this otherwise chilly morning.

My to-do list unrolls like a cartoon scroll in front of me. I'm choosing to look the other way for a moment, but the moment keeps stretching out in front of me.

There are so many tasks demanding my headspace that I feel guilty for indulging in this extended pause of my day.

I shove the guilt back into the box it emerged from and sit on it. I feel it shaking and protesting beneath me, as I stubbornly stay put.

Once set into motion this day will continue on it's own momentum. Phone calls and housework and the care and keeping of young ones. I'm certain it will spill over into tomorrow and endless days following.

I'm ignoring all those tasks screaming for attention and being. Just being.

Somewhere in this being I recognize someone I love. Someone I neglect. Someone worthy. I nod a silent greeting to her, wink, and toss that box of guilt off the porch rail to the ground below, out of sight. We decide to sit and catch up for a few more minutes. It seems like this impromptu connection deserves coffee; alas, if I move to perform even that one task, the spell will be broken and the to-do list will unfurl and demand to be reckoned with.

So I sit on the porch swing with my beloved and we commune for awhile longer.

And she is lovely.

And she is me.

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10 Things That Happen When You Have An Unusual Name

Picture this:  

It’s March of 1973 and a couple is expecting their third child.   Deciding on a name in case of another girl proves fruitless (they already have two well-named girls), and mom has been trying to convince dad to name this one after her grandfather (and it’s going over like a lead balloon). 

They sit down to watch the show “King Fu”, (about a Buddhist monk in the old west) and Jodie Foster is playing a girl named “Alethea”. Mom slyly sees an opportunity to nickname the baby “Lee” after her grandfather and both parents agree to the name (and hope for a boy). 

Having an unusual name has it’s ups and downs. For example:

  1. I’ve never had to deal with being one of two or three people with the same name in any situation ever. 
  2. In fact I’ve never met another person with my exact name. I’ve seen Aletha’s and Althea’s, but never another Alethea. (Though I know they exist!)
  3. I’ve never had my name on any item, ever (unless you count “World’s Greatest Mom”.)
  4. I get nicknamed, whether I want it or not. 
  5. Mispronunciations can be comical. I’ve been called everything from Athena to Ophelia!  (It’s pronounced Uh-Lee-Thi-Uh). 
  6. Spelling it every time. Except to the few people who know Greek. In fact clergy always get my name right!
  7. It’s just about magical when someone gets it right, especially when combined with my last name, which is equally challenging. 
  8. It’s so exotic people ask me what country I’m from. (I’m Dutch/German from Michigan, for what it’s worth). 
  9. I feel loved when people use it preferentially (my husband often does and my dad nearly always). 
  10. I turned out to be just as unusual as my moniker, so it’s utterly apt. 
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6 Observations From an Hour at the Beach

Have you heard enough swimsuit conversation yet this summer?  If you’re like me, the answer is probably, “a million times, YES!”  But here I am with my two cents to throw into the conversation.

Yesterday, since our day was already a shit show, I decided that nothing could get worse if I took the shit show on the road, and since the boys love water, we went a few miles down the road to a local lake, in hopes that we could “blow the stink off” as my mom always said.

I don’t actually enjoy swimming, I think it’s because I sink like a stone and have zero coordination, which makes it ironic that I own quite the collection of swimsuits.

I’m constantly in search of the swimsuit.  The one that covers all my scars, stretch marks and cellulite, as well as flattering the girls and magically making me look like Gisele Bundchen, which not a single suit ever made could possibly do, but I hold out hope anyway.

For no other reason than my failure to shave my bikini area before our impromptu trip, I chose a skirted suit, threw it on, and took off.  (After slathering children with sunscreen, getting all the necessary equipment, and having to back up the driveway twice for forgotten items, that is).

Upon our arrival at the lake, I scanned the scene.  You know what I saw?

  1. A bunch of people, mostly women, in a wide array of swimsuits.  Not a single one of them looked like Gisele Bundchen!  NOT A SINGLE ONE!  (So that was a relief).
  2. Every single one of the women had flaws.
  3. Not a single one of them stood out.
  4. It didn’t matter if they wore a bikini, a tankini, or a one piece or any other combination.
  5. Not a single person showed any sign of caring that my girls aren’t perfect, that I have cellulite, stretch marks and scars.
  6. I’m not positive, but I’m pretty sure every other woman there had imperfect girls, cellulite, stretch marks and scars, or at least 3 of the 4.

In other words, every single person there was entirely nonplussed by the whole thing.  As a group, people were having fun, playing with the kids, beating the heat, and enjoying summer.  And on my way home I had to wonder why on earth we get so darned haired up about putting on swim suits.

I get it, I’m not the same as I was when I proudly stood on the dock in a bikini, posing for pictures at age 16, but neither was a single other person there; not a single one!

I don’t know where it comes from, this toxic obsession with looking perfect, but I, for one, am over it.  I don’t want to be self conscious, or believe that everyone expects me to be perfect or notices when I’m not.  That, my friends, is a load of crap, and I’m not buying it.

 

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11 Observations About Being Fabulously Female

This summer I’ll be celebrating 44 revolutions of around the sun, and as such, I hope I have learned a thing or two about existing in the female form.  We’re a pretty remarkable bunch, I must say,  I am continually amazed by the women around me and my own self.

  1. It’s fabulous to be female…except when you have to pee outside.
  2. You can bleed for a week straight (or longer if you’re going through menopause) and not die.
  3. We have a reputation for being catty, but when it comes down to it, we have each other’s backs.
  4. No matter how thin you are, your body will have dimples and rolls.
  5. Fussing about the dimples and rolls won’t help.  (So just get over yourself.)
  6. Women are more likely to cuss than men.  (Perhaps there’s a reason for this, no?)
  7. Boobs are a blessing and a curse, and often both at once.
  8. Speaking of boobs, they’re lopsided, pretty much universally.  (Or is it just me?  Please tell me it isn’t just me!)
  9. We have less physical strength and speed than men, but more flexibility and better senses.  (I personally think there’s some huge advantages here).
  10. Our bodies change enormously throughout the normal lifespan, with more girls having more obvious changes than boys from puberty through old age.  (Fighting it doesn’t help).
  11. Multitasking, we rock at it!  (Speaking of which, I have been interrupted about 58 times during the writing of this post.)

You might notice, these have nothing to do with pregnancy or childbirth.  The capacity to produce children is remarkable, but women are so much more than our capacity to bear children.  I’m sure I haven’t covered them all, what is your favorite or least favorite thing (or anything in between) about being a woman?

parenting · special needs parenting · Uncategorized

“Should Have Aborted” (said the troll)

While I don’t want to give any undue attention to a troll, a rotten comment on one of my posts seems like an opportunity to examine the notion that we “should have aborted”. 

Abortion was never an option for me. I don’t suppose that surprises any readers. From the moment I knew I was pregnant I delighted in my children, and spent days fascinated by the magic occurring within me and the outside changes to my body. 

I didn’t suspect that my children would be born with a disability, and naively I just decided that I would love them no matter what, and declined any and all testing. 

When Alex was born and we were told he likely had Down syndrome (the testing takes several days to return, but we had accepted the diagnosis before it was confirmed), we were taken aback. I wondered if my husband would still want to bestow his grandfather’s name upon our son (he did), I wondered if our marriage would survive (it did, and I have since learned that parents who have kids with Down syndrome have a lower rate of divorce than average). There were many more questions and doubts both immediately and over the following years. 

Even though sometimes it’s tricky and tiring, I have never, even for the briefest moment, wondered if we should have aborted. 

If we had aborted we would have missed out on the sweetest boofy baby hair and the best smiles ever. 

If we had aborted, we would have missed out on so much joy, laughter, and fun. 

If we had aborted we might have missed out on a more unconditional love than we have ever witnessed elsewhere. 

If we had aborted we would have missed the best hugs ever. 

If we had aborted we would have missed many milestones which were only sweetened by their late arrival. 

If we had aborted we never would have known that Down syndrome would change us so much that we would want another child who has it. 

In the end, I feel compassion for the person who would troll a parent of a child with a disability by saying they should have aborted. I’m thankful we were able to see Alex as a child, a treasured human being who has so much to offer in this world. 

Last, it’s hard to be offended when your heart is full, so you picked on the wrong mama, you troll, but I did report it because I don’t know who you might troll next, and if it’s someone in a rough patch, I hope to spare them the stress. 

Best wishes troll-man, I hope that some day your grinch heart manages to grow. 

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9 Random Observations About Moving 

After a relocation process of over three months, our family is now settling in at our new house…our dream home. 


It’s been a happy process for us, set in motion by a promotion for my husband.  We anticipated many of the changes, though a few managed to blindside us.  But it’s the day to day details that stymie and delight us most. Such as:

  1. It is actually fun to clean a new (to me) house. I’m certain it won’t last, though. 
  2. Shopping at a new grocery store is terribly disorienting, especially when you’re hangry. 
  3. No matter how much you love your new home and yard, you will be compelled to change things to make it your own. 
  4. Having all new places to run will both thrill and discombobulate you, especially when you know exactly how far every possible run in every possible direction from your house is. 
  5. Cleaning and showering with different water changes everything. (Hair!)
  6. All family members (dogs included) will have emotions to process in their own time frame.  
  7. There will be many wrong turns because you have no idea where you’re going. (I just call it exploring and roll with it.)
  8. Figuring out new light switches. 
  9. We walk about an extra mile a day around the house trying to remember where we  stowed things.

It’s been over 15 years since I’ve moved, so this is a whole different ballgame for me. We’re still in the state where we’ve always lived, but an area we haven’t previously explored.  Change is exciting…and disorienting, but for me, mostly a whole new adventure!