The Wind Beneath Her Wings

I have been writing this post in my head for probably close to a year.  I know what I am trying to say and I also know what I am trying not to say… lets hope I succeed.

Being back in here in Cincinnati, the place where Lamp was born, inevitably brings back memories from that period of our life.  The period that was pregnancy with a baby we knew would have special needs, but we had no idea how those needs would play out.  Like many parents in this situation one of the many things you initially grieve, is the sibling relationship you hoped your children would have, but now fear will be forever altered.  In those early days while I was still prego with Lamp we tried to gently ease PSP into a more realistic idea of what life with her new baby sister would be like.  Not that we exactly knew ourselves, but we knew there would be limitations that that of course their relationship would have limitations as well.  As you all know by now, we were the dum-dums who didn’t realize that a missing hand here or there was no biggie.  To be fair, we didn’t know if there would be a lot of other issues, but still…  From the get go there was a love and tenderness there that transcended earth, time and limbs.

I don’t remember how old they were the first time I saw PSP carrying her little sister around–I’m thinking Lamp was around 18 months, so sometime in San Antonio– but I can still see it clearly in my mind.   PSP ‘s arms under Lamp’s armpits and torso, locking her hands together, and carrying her sister away.  At the time we thought they were both too little and that PSP might accidentally hurt Lamp so being the perennially overprotective mom I tried to put a stop to it.  What really sticks with me though is the mischievous little grins on both their faces and girlish giggles.  Like they knew they were bucking the system and testing new waters but not quite sure if they were going to get away with it.  After a few unsuccessful attempts to deter this new thing we realized that 1) PSP was strong enough and actually being careful and 2) that Lamp loved it.  And soon this became the norm for these two partners in crime.  Big sister, carrying her little sister from room to room, playing their various make believe games and dress up like it was business as usual.

And while this became a natural and normal part of their play there is a a part of me that still feels this awe and wonder at PSP’s ingenuity and frankly her willingness to make this typical.  There was no problem solving summit, or complaints from Miss P about not being able to play with her sister or her sister not being fun to play with because of her limitations… they just did it.  Playfully, gleefully and with the giggles of little girls who were living in their own world by their own rules.

Thankfully, this interaction is still a part of what normal looks like around here, and it’s often just out of necessity.  In the morning as we’re rushing for the bus PSP helps Lamp get dressed and carries one of her sisters to the stroller, while I carry the other, so we can make it to the bus stop on time.  And as we’ve adjusted to dads longer hours at work one day I asked PSP if she would help get Lamp in the bath and get her washed up.  She happily agreed.  I couldn’t help but snap some pictures as my sweet oldest child bathed her younger sister from start to finish.  That is from running water, getting her in the tub, washing, playing, getting her out of the tub and jammied up.  She’s 7 you guys.

I’ve often sat back and watched this routine at work–PSP carrying Lamp around a playground, story time, our home, the backyard and at some point the terribly cheesy but very appropriate Bette Middler song, The Wind Beneath My Wings, pops into my mind time, and occasionally I wipe away a stray tear.  I can’t believe we were ever worried about this relationship.

And this is where I want to be careful.  See I wanted to write a post a while ago about not ignoring siblings of special needs kids, because man… it happens so much.  But instead I wrote a post about focusing inward.  Because I decided I could try and spread this message of not ignoring these amazing siblings, but in the end focusing my energy outward with awareness was not a great long term solution.  You’ll have to read the post to get what I’m saying.  Then I just wanted to write a post about what an amazing kid PSP is… which feels like I’m trying to throw her a bone.  And I don’t want to do that.  Girlfriend needs no bones thrown her way.  So somehow today I’m trying to put it all into words.Lamp naturally draws a lot of attention to herself. Her unique body, coupled with a sparkling personality and she is a people magnet. When she zooms around in her power chair, that girl gets double and triple takes like Brangelina walking through a shopping mall. People want to meet her, talk to her and yes they’re often inspired by her  And honestly, that’s why many of you are here, reading this blog. I get it. She is the reason I started the special needs spotlight–so again, I get it. What is occasionally difficult as a mom is watching people make a fuss over Lamp while often ignoring her equally as amazing sister standing just inches away. Lamp is just Lamp, and she gets a lot of credit for being who she is…. for being born that way if you will. Lamp’s adaptations come from knowing no different, while PSP’s adaptations are born out of a love for her sister and in many ways she’s the one who has had to adapt even more.

Ick.  I honestly don’t like writing that as some sort of comparison of my kids. There is something that just feels yucky about that, but at the same time I’m trying to help you understand something as well.

See one of the biggest B.S. things that people like to say to you when you find out you are going to have a kid with special needs is “special kids go to special families.” There are a lot of reasons that I’m not fond of that sentiment, but first and foremost it’s just not true. Do you know how many disabled kids are abandoned or abused as a direct result of their disability? And while I think my family is pretty great, we’re an ordinary bunch as well. Even my daughters whose relationship I tend to idealize is one frought with many typical sibling frustrations and arguments. My husband and I love each other, but we argue over the stupidest things. We were not any more prepared for this journey than any other family out there. Of course we try to be good parents, and we do things that I think good parents should do.  But for the most part, we are still us–a more aware and enlightened us, but still us.

But when it comes to making Lamp’s world a little more Lamp friendly, her sister is the one who deserves a large amount of credit here. Because lets face it, in kid world, kids have a lot more street cred than parents do. When we used to go to story time in San Antonio and PSP would sit on the floor, holding Lamps hand, that is way more credible to other kids than if I–the mom–would have tried to encourage other kids to sit next to her.  As we moved here and started making new friends, the girls PSP’s age didn’t necessarily want to include Lamp–who is not only physically disabled and in a power chair, but much younger. But as PSP included her in their play she is now just one of the gang… as an adult I just wouldn’t have had that sway. Even the fact that she argues and gets annoyed with her sister–just like any other sister–helps other kids see just how ‘normal’ this all is.

In the end, I don’t know what Lamp or PSP will remember about their childhood years. And I suppose in many ways it won’t seem that remarkable. There are no ponies or circus tents in the backyard, we don’t live in an exotic location or have access to an endless chocolate supply. And at some point they will realize, if they don’t already know, that their loving and earnest parents were winging their way through each day and as fallible as any two humans could be. And I honestly don’t think our parenting is somehow off-the-charts amazing and tailor made for a limb different child. Lamp is who she is. I do hope they remember this unique and special bond they share, a bond that has been made possible largely by the love a big sister has for her little sister. An internal willingness and desire to go the extra mile, something neither B or I can take credit for. Lamp is an amazing little girl, it’s true. But on more than one occasion B and I have commented that if anyone has shaped Lamp’s confidence and helped her feel comfortable in her own skin, it’s her big sister, who has literally and figuratively been the wind beneath her wings.

And today, I just wanted you to know that.