Monday, July 11, 2011

glass half full

Dearest Lily,

I started off this letter to you on a different note. Something happened last week that had me thinking. Actually, it happened three times in a row, when you and I were running errands...and it usually takes at least that many times for something to lodge itself in my brain as annoying or disturbing.

But halfway through this post, I looked over at you playing with your toys, and you flashed me that million-watt smile...and I changed course.

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Because life is full of glass-half-empty situations, and if I wanted to, I could devote an entire post to each one. I could see a syndrome, or a symptom of a syndrome in every entree our day dishes up...or I could look at perceived problems as opportunities to grow or learn or change...or maybe even help others change. A glass half full if you will.

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So I'm thinking instead about last night, and how your brother "rescued" you from nursery at church. He heard your cries just before the service started and approached my piano with a worried look on his face. "Lily's crying, can I go get her?" he asked, and I couldn't refuse. The nursery worker knew you would be fine, and she tried to set your brother's mind at ease about letting you stay...but he held his ground and told her, "Lily's not like our other babies- she needs her family more."

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You know what is amazing, sweet Lily? It wasn't that long ago that Tyler wasn't so sure he was ready for the special needs card. He didn't start the day seeing the glass half full, and it took a little bit of time for him to see that love doesn't just add, it multiplies. Those tender words he repeated to me on the way home from church last night made my heart swell with pride. Your other siblings chimed in about how much you love them, and how obvious it is that your prefer your family over others. That dependency isn't a burden, it's a blessing, and there is something so powerful and beautiful about being needed.

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And it's all about perspective, isn't it?

Which brings me to the glass half empty story.

We were in the line at a clothing store last week, checking out...you were in your new sling, cozily attached to me at the hip, gazing shyly at the sales girl, when she asked the inevitable question: "how old is she?" Followed by the inevitable "wow, she's so tiny!" after I gave your age. Which is not something that I find negative. Growing up I was always the smallest in my class, so I was well versed in appropriate responses to statements like that, thanks to your Grammi. "Good things come in small packages" was always on the tip of my tongue, and the older I got, size didn't really seem to matter to me as much as it did in those elementary school years.

So the shock over your size had nothing to do with what rubbed me wrong.  Likewise, it didn't bother me in the slightest when the sales woman (or the other two that week) pressed with her questions, "Was she premature?" or "Were all of your children tiny?" or some other query. Each time I weighed it out...as always...to tell or not to tell? It is still awkward for me, not because I have a problem telling people you have Down syndrome. Not at all. It's just that I really don't want to make an issue about it. I really just want people to see you for who you are, and see you as a baby first, and not a syndrome.

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But the problem solver in me won out, and rather than leave an unspoken or carefully disguised question lingering in the air, I answered it. "She has Down syndrome, and she's got the Rice genes at play too... so that makes for a very tiny Lily." I said it with a smile, not a trace of sadness or remorse, but without fail, the veiled pity began...

"Oh, well she is cute anyway!"

or

"But, she sure looks happy!"

and every now and then the one that cuts...

"Oh, I'm so sorry."

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You know what I want to say, Lily?

Please don't be.

I am not grieving, I am not happy-in-spite-of, and most of all I am not sorry.

And you know what I want them to say? What I wish was on the tips of strangers' tongues, just as readily available as my good-things-small-packages response?

"She's so cute, what's her name?"

or

"My daughter is 18 months old too"

or

"I love her eyes"

or any other normal response to a cute little girl staring shyly at the attendant. Minus the pity.

But you know what that extra chromosome brings?

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Compassion.

Because I was there once too, Lily. I gave the conciliatory words, in just the right tone of look-on-the-bright side, and I may have even patted myself on the back, figuratively speaking...because I really did think I was doing a parent of a child with special needs a favor. But because I hadn't walked in their shoes, I didn't have a clue. And neither did that sales clerk, or the umpteen ones before her...

That we don't love in spite of...we just love.

And while we may go through some additional challenges in life thanks to that extra piece of genetic material, like squeezing extra therapies into our daily routines or facing extra health concerns...we wouldn't turn back the clock and be without our children if you paid us.

So what's a mama to do? I can see it either way. I can see a lifetime of unintentional hurts and slights on the part of those who've never walked this way before...or I can take those moments to help someone else see that my glass isn't just half full, it's overflowing.

"Oh, don't be sorry!" I smiled at that well-intentioned, but misinformed salesperson. "Lily is our greatest blessing! She's brought more joy to our lives than we ever thought possible!"

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And as you beamed that million-watt smile back at her I do believe she saw the glass half-full as well.

Loving you always,

Mama oxox

36 comments:

Penny's Peeps said...

love this post....what a precious son you have... brought tears to my eyes, what he said about her needing her family more than others.....LOVE THAT!!! blessings....i miss you!

aly win said...

i really value these types of postings ... I know as some one who has not been exposed to down syndrome hardly at all ... it is some thing different and like many things that are out of the normal everyday droll ... I don't (along with others) have the reference points to know how to respond. These posts make it some much easier and clearer how to process, comprehend, and react. I often have a huge mind battle when im in the face of a situation like that do I pretend that I don't notice? can I share the joy that automatically fills my heart each time I see one of those big smiles and beaming eyes? Do i inquire more into their lives? this post made it clear that mom's (or at least patti) wont mind and would love if I just share how i love the baby's outfit or hair just as
I would with any other child. Thank you patti.. you are giving me an extra people skill that I can use on my starbucks guests ! ... You and Lilybird should come on in so i can try it out on u guys ! xo

Jane@flightplatformliving said...

patti, i too have had many friends ask me 'how do we respond, what would be best to say?' i too have been both sides of the fence disghing out unitentional hurts, but your post defines that grey area so beautifully! i love you glass half full posts, even though every time i see your wonderful family i see lots of glasses all spilling over! love you blog world friend xxxx

Kellan's momma said...

Tylers so sweet to his sissy! I too struggled with whether or not to tell people Kellan has Ds. He too is tiny-at 21 months still fits a 12 month size! I have gotten so I almost jump at the chance to tell people. Why? My thinking is that the more people I tell, the more that see us interact and see us as a "normal" family, maybe, just maybe, one of them someday will find out they are expecting a child with Ds, and they will remember us, and how we are not so different than any other family, and maybe they will choose to give that baby life. I don't know, maybe naive of me, but I want people to know, my son has Ds and I love him just the same, and he is no different than any other child! He laughs, he cries, he loves his momma and daddy and brother and sissys, he hates fruit, and loves chocolate milk and ice cream, he loves to suck his thumb and snuggle with a blankie and mommy. He's even developing quite the temper!! And quite honestly, I've never gotten anything but loving responses, which I know my time will come, just hoping it's a long way off! Thanks for the great post, as always!

littlelola said...

Well if I ran into you and Lily .. I'd probably ask if I could hold her :) She is amazing and just that much more special. Its hard to understand why many people try and make something negative out of something so positive... saying they are sorry... Sorry for what? Sorry that you have the most beautiful daughter in the world, or sorry that your daughter is so stinking cute, sorry that she has a family that loves her more than life itself, sorry that she is healthy and perfect? Well guess what... Im sorry! Im sorry that I dont personally know you and Lily... and Im sorry that we will probably never meet in person and Im sorry that our 18 months old girls will never be able to have a play date. Lily is amazing and a true blessing. :)

Patti said...

littlelola- you are too sweet! Bring Berkeley to Corvallis and we will have a playdate! :)

Mackenzie Rice said...

sweet post mama. love u and miss u!

Ginger said...

I'm so glad you said something back. I think people need to see that we are joyful mothers of our children. The world sees all children as burdens; just enjoying our blessings makes a powerful statement.
My bio kids are all short. My 9 yo daughter said the other day: I know I look 6, but I'm really 9.
She was smiling as she said it. Just stating a fact; no embarrassment.
My "twin" (one adopted, one bio) 6 year olds are a head apart in height. Funny.
Precious post!

Team Lando said...

How could anyone see a half-empty glass with that sweet smile aimed at them?

Laura said...

This world could use a lot more of the kind of kids you are raising.
Soo refreshing!

cathy said...

simply , eloquently, said

just beautiful & honest, Patti

xoxo
cathy

my family said...

what a good big brother....my girls are like that with WIlliam
I am going to post about something catherine said to william in the near future such love for all and I would nt change a thing either.
Have been keeping up with J and N's blg...asked to be allowed to read her private blog:) Baby is K is a doll

nicole said...

Lily is such a great witness to the beauty of life just by her mere presence. I am so glad you told them she has Ds so they could replace their preconceived ideas with her sweet little face. She can change their thoughts and perspective with one grin. I absolutely love seeing people, whether they are babies, toddlers, or adults, sporting that extra chromosome out in public. They beckon me to smile at them, look them in the eye and make a connection ~ to let them and their loved ones know, "yes, you are a priceless soul and you reflect the purity of heaven". I want their loved ones to know that their presence is not only welcome but encouraged. And while its easy for me to say because I don't feel the hurt you do Patti, I just want to encourage you to keep letting Lily's light shine far and wide.

Sarah - Fat Little Legs said...

I love it! As someone who is going through a pregnancy with a baby that is likely either Down's or Turner's (we didn't have the amnio so we don't know), I get a lot of what I'll term "interesting" comments as well. I know people's intent is good, but they just can't figure out what to say. Sometimes the comments are rough on me, but I'm learning to let them pass. Lily is gorgeous as always.

Lora said...

Thank you for posting this. I know I for one have been at a loss at times for what to say so a parent with a child who has special needs. Often I choose just not to say anything out of fear of saying the wrong thing. The other day I met a mom with two little boys and the older boy only had one arm. I was sitting at a small table trying to read a book to my little guy when this boy came over a joined us. My son was so excited and wanted this boy to read to him instead of me. He didn't care that he had one arm, he didn't even notice. I asked the mom about her boy's ages and other casual conversation but never once said anything about her son's arm. He was sweet and charming and trying so hard to entertain my little one. I didn't see the need to point out the obvious or ask her personal questions, and I think she appreciated me treating her son like any other kid.

Leah said...

So perfect. You bring me to tears yet again. This is a wonderful letter to Lily and says so much. Very admirable that you can say with a smile and without anger that you are not sorry. No one is sorry over here either and I hope to be able to say that with smiles too.

Wren said...

How sweet is her big brother!?! I love that story!!!

It's funny the things or comments that rub us wrong. Sutter and Landon are both big boys and I think the fact that I'm so short makes them appear even bigger than they maybe really are. I get "wow your boys are so big and your so little, how'd that happen?" Um they have a tall dad - duh! The one that really bugs me the most though is "look at all of those teeth!" I know it's weird but I hate when people comment on how many teeth Sutter has. Isn't he suppose to have teeth?? I'm not kidding more than once a week someone will comment on the number of teeth Sutter has...not sure what's going to happen when his eye teeth come in (& they'll be here in the next few weeks). Maybe it's because he looks younger than he is, but to me it looks "normal". Landon had all but his two year molars by the time he was 18-19mo and so will Sutter...I don't really need people to point out the fact that my baby has a lot of teeth...which really isn't a lot, its the same number we all have! :) See I told you it BUGS me!!!

Tiny is good! I'd love to cuddle that cute, tiny sweet girl!!!

Marci said...

Thanks for sharing this! My niece has DS, and this put into words something I had never been able to. :)

I love reading your blog, and how you are so upbeat and positive, but "real" too!

cara said...

Beautifully said Patti!!! Can I just tell you how much I LOVE these pictures of Lily!!!! And I know how thankful you are for her. She is perfect.

Kelly Marin said...

Lily is adorable, I love these pictures! As always when I'm reading your blog the kids come over and want to see the latest pics and Jessica made the comment " Mom I wish I had a sister like Lily, she would be so spoiled" My heart just melted.

Morgan Matula said...

I absolutely LOVE this post!! As my sister said above (Marci) her niece (my angel baby) has DS and this explains how I feel to a "T". Thanks for the blog! I will probably share this on FB so other people in my life will know how I feel too! :)

Callie said...

She is absolutely beautiful Patti!

She is looking every bit of a toddler these days, her hair is coming in so pretty.

Twilson9608 said...

Beautifully wrote!

soha said...

Dear Patti, hi, I am a mom from Iran and I have a little DS girl. She has 10 weeks and during this weeks I find good friends by their inspirations blogs. Today I find yours and I read some part of it. I read " I had a dream" and I cried by every sentence. I am full of fear and also love,I also feel solitude but reading your line let me know that my feeling is not strange, although geographically I and my little are so far from you and your little but our feeling are the same. So I am not alone here. my little girl have a good friend all over the world, she should only stay and find them. bless to all little angel allover the world

Jeannette said...

I come to your blog to see Lily's adorable little face! I don't even see Down's Syndrome when I look at your pictures...I see the smiles, happiness and love and appreciate you sharing her with us!! But that being said, if someone I knew needed to learn about Down Syndrome; I would definitely send them to your blog because your feelings and real, honest and hopeful as they should be for any child!!

angie said...

Patti- I love this post. I think it's the everyday stuff that matters the most. I think so many people will learn from this and be able to appreciate your viewpoint because you explained it so perfectly. I can relate to this because my little boy is developmentally delayed with sensory processing disorder. I get those questioning looks, plus the question, "How old is he?" all the time. I'm always debating about whether or not to explain his situation with complete strangers. Not that it's their business, but I feel like I want people to understand that even though he's different, we love him so much just the way he is. If I had the pleasure of meeting Lily, I would say hello and tell her how beautiful she is. God bless you Patti. :)

Becky said...

Beautifully written once again. Yes, I have been is your shoes so many times and wrestled with how to respond. After four years, I finally have lost that feeling of needing to tell them she has Down syndrome. :)

Rachel Bretbunner said...

I was glad to be able to cuddle with Lily after she fell asleep that night. I was standing behind Tyler at church and you could see his arms where getting tired. I wish I could comfert her like you and your kids do. It is so precious how anyone of you kids can pick up Lily and she quites right down if she has been crying.

Lauren said...

Because my oldest son has a genetic disorder, I often see kids with DS at various Dr. Apts. I typically don't mention the DS at all, but instead just talk about cute clothes, or how great their baby is walking, or whatever else I'd say to any other parent. I've often wondered if other parents appreciated this or not. I like it when people treat my son like they would ant other and when they don't make a big deal about how little he is ( he has a form of dwarfism) so I just sort of assumed that other parents would feel the same way.

I'm glad to read that I'm not alone.

littlelola said...

Maybe a road trip! I am located in Monterey Ca. Pretty far but if I got to meet Lily it would be worth it :)

Erin B said...

I wish every child had someone that would stand up and rescue them because they need their family more! That is so incredibly sweet and loving. Also, I just had a situation last week similar to your store situation but I was on the other side of the fence, not knowing how to respond. I can say that after chatting with an adorable little girl with Ds her mother gave me a hug and said thank you. I feel that I have come to this place of knowledge and acceptance because of blogs like yours so...thank you!!

Angel said...

So perfect. You say it so well. And Lily is so blessed to have such great siblings. I'm glad my Coop is too. :) Thanks for the great post! Brightened my day.

Laurie said...

thank you for the words...... "we don't love in spite of...... we just love". As always, love your posts, thank you for sharing Lily and yourself with us.

laurahlj said...

I love all of your posts but this one really hit home. Strangers have been commenting on Bens small size and I'm never sure what to say. Thank you for your insight!

Mama Keene said...

Once again in tears, what a sweet brother! And such a beautiful Lily!

Pelikán said...
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