Wednesday, June 22, 2011

stop the bus

Dear Lily,

There's a crazy thing that happens to a parent of a child with special needs. And it's not that I never experienced it before as a parent of a "typical" child- after all, you have 9 older brothers and sisters. It's just that it's magnified. Like a billion times.

And every time it creeps into my thinking, like a tiny sliver under the skin, pricking at first but threatening to turn into a throbbing, hurting wound if left untended...I have to tear it out. Deliberately, immediately, stop the downward spiral of pain that will inevitably continue without a conscious effort to end it.


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It's the comparison bus. And if I had a dollar for every time it tried to hit me, aimed straight for my heart at lightning speed, unwavering in its path ....I'd be a very rich mama.


And Lily, the hard part is- I never see it coming.


Because honestly, we're way past the grief thing in this journey called Down syndrome. It's been many, many months since I cried any tears over your diagnosis. And honestly, you amaze me every day with what you can do, and those milestones you're reaching really - truly- flat out astound me. I must ask your daddy a hundred times a day- seriously- can you believe how smart she is? I'm soaking up every little moment, and learning to expect not accept has gotten so much easier...you've made it easier, because you really have taught us that even if we didn't quote that little mantra to ourselves daily, you'd be proving to us that there's a whole lot more can-do in that extra chromosome then we thought. But sometimes...


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Sometimes I read somewhere about a baby who is exactly the same age as you, possessing that same extra chromosome...doing things or saying things that you're nowhere near doing or saying...and the bus hits. Doesn't just threaten to hit, but slams full force into my otherwise terrific view of "life with special needs" and has me asking all the painful questions again...

What if?


What if these delays aren't just delays, but are road signs, pointing to a future of serious cognitive limitations?

What if you aren't ever able to communicate effectively, and in spite all of our efforts to help you speak some day...you don't.

What if, in my effort to be the very best mommy for you that I can, reading everything I can get my hands on to help you, gleaning from other parents and therapists and trusted sources, I am not doing enough- and you suffer for it.


And Lily- I never asked these questions with your brothers and sisters. Sure, I had times when I compared what one of them was or wasn't doing with another child their age, and made mental notes to focus more on fine motor skills or eating healthier or reading more...but I never felt the weight of what those efforts might mean for their futures, never questioned that at some point they would eventually "get it" and I could relax and know that my child was going to be okay.


We've had late talkers and late walkers, we've seen both ends of the spectrum as far as when our children crawled or climbed or strung words together...but this comparison game never had such deadly stakes, never meant the difference between doing fine and drowning in despair.

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But the great thing about walking out this parenting-special-needs-thing ? It does get easier. Because this time when I watched that baby perfectly sign to his mama what he wanted, eyes locked on hers and clearly saying "music" with his hands, this time when I read those words, "she says baby" and knew that little accomplishment was probably light years away from where you are right now...


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This time...I stopped the bus.

Because you know what I've found, dearest Lily? It's just an illusion. That dark phantom, barreling down the highway of my mind, ready to knock me off guard again, sending me careening wildly to the place of grief I thought I recovered from long ago? It's just a mirage. It has no more hold over me than I will let it, and with the flick of a little switch in my brain called will, combined with a sucker punch of faith - it's gone.

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I truly do have power over my fears and my faith and those inevitable what-ifs. I can choose to dwell on them and allow them to torment me and rob me of what-is, or I can turn them off and realize that at some point you are going to be who God made you to be. Will I strive to do better if I feel I'm not giving you all the tools you need to grow and learn and develop well? Absolutely. But torture myself by analyzing every little detail of what we're doing to help you, from how many hours a day I spend on therapy, to what type of vitamin regimen we put you on? Not going to go there. I am going to allow healthy introspection and honest assessment of our parenting skills, but I refuse to live my life worrying about the future, and what it holds for you. I'm not going to scrutinize every little milestone- missed or celebrated- to try to judge what lies ahead.

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Because in the end, you are happy and you are loved and you are my Lily, and I don't want to miss one single beautiful moment of who you are today by grasping at who I hope you become.

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Finally brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things. Philippians 4:8


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Loving my perfect Lily,

Mama oxox

33 comments:

stephen kopp said...

Good grief (what is so good about grief?) I am once more on that emotional roller coaster you seem to be able to take me on each time you get so philosophical. DO NOT COMPARE! Lils is jut where God wants her to be and stop fretting about her future 'cause God already has that planned. Give that precious cherub and hug from Grammi. And yes, I am still on Papa's PC.

cathy said...

She IS your perfect Lily, everyones!

That bus comes to many routes, you know we have had our buses in this house as well, a different line than yours', but a bus just the same. When it hits, we lose THIS moment & many to follow, not to mention some panic attacks that may accompany it, but I have learned what you learned & life is SO much better off this way
xoxo
cathy

cathy said...

that last picture of you both is spectacular

xoxo
cathy

Sarah said...

I'm a semi-new reader to your blog and had to comment on this post! I just posted a tiny about the comparing thing and if you let it creep up on you it does knock you over! I have the same goals...to stop comparing...I never had the grieving process as I adopted Zoya and KNEW she had DS...but it doesn't make it any easier not to compare her to others....it's not fair to her when I do because she is the perfect image that God created her in and who am I to mess with that. She is strong and smart and beautiful...most importantly she is herself and that is why I love her!

www.angeleyesadoption.blogspot.com

NikkiB said...

LOVE LOVE LOVE that last picture of you two!! I need to remember to get in front of the camera with my kids. Great post! :)

Rochelle said...

Glad you stopped the bus, Lily is perfect, just.as.she.is!

nicole said...

There is no doubt in my mind that Lily is a little smarty pants. One week, she signs "all done". The next, she walks across the room. After that, she says, "dadada". She keeps her over 500 followers coming back again and again to see what her new trick is . . . now that's smart!

Ashley said...

Lily IS perfect, and she is EXACTLY who God wants her to be! Love you, Lils! :)

Leah and Nick said...

What a beautiful post. I absolutely love the photo you the two of you together. You express so well the thoughts I recently thought after a thread on the BBC Ds board. And the amazing thing is that you realize that you can stop that bus and appreciate what you have. What a wonderful lesson and perspective to offer us. Thank you.

amy said...

it's hard not to compare...
but you got it patti.
one day at a time, girlie.
continue to enjoy what she can do, praise her for that, and we will continue to amaze you.

teal915 said...

Glad you wrote this, becuase I have felt the same things when I have seen things that Lily can do. Even though she is a few months ahead of Kamdyn, I worried that she wouldn't be to that point and what does that mean. But what you said is so true. Why worry over what ifs and what if nots.

Krista said...

The bus hits us all but I have confidence that lily, ella and all of our other special children live in a different world than existed even 20 years ago. And I look at adults with Down Syndrome and they walk...and they talk...and they do it on their own agenda. And that's okay. You give Lily so much more than so many other children have. A home, a family, the love of parents, the love of God. Blessings,
Krista

Sarah said...

Patti, I think what your wisdom here applies to things in general that are not virtuous (status, dress size, material wealth) not just special needs issues. Plus, you can tell with Lily's look out of her eye, she is NOT profoundly challenged. She shows happiness and recognition. AND let's face it, children who are the youngest in big families talk later -- they have the older siblings talk for them and that is true of "typical" children, too. But the real reason I got on her today was to tell you that Anna Cate (5) did art camp this week and one of the girls sat next to Anna Cate the whole week and she happened to have DS. She was precious, totally did all the art, engaged in conversation, wanted to hold Molly (18 months), and did it well even though Molly jiggled about, pouted at her Mom for making her wait to cross the street and was overall a precious child. I enjoyed talking to her every day as did Anna Cate. If it weren't for Kelle's blog and the fabulous people like you I've met in this community spreading awareness, I wouldn't have probably reached out and I was richly rewarded by it.

Patti said...

Oh Sarah, your comment was so sweet, that just made me cry. You are so right about the youngest sibling thing- in fact I just thought about this today after Kelle and I exchanged emails. She said Lainey talks to Nella so much, and that may be what is helping her..and it made me think- my other kids talk to Lils constantly too...but it could be that she is letting them do all the talking for her! My second to oldest son was like that- we were so happy when he finally said "baby" at age two (when I had my third child). And now you can't shut him up- ha :) Thanks again for your wisdom and kindness:) hugs to those gorgeous girls!

Becca said...

Such a beautiful post, Patti. There are *always* going to be those "what-ifs." Samantha's geneticist always tells parents, when they ask her when they'll know what their child will be capable of, "At the end of his/her life." Our children will surprise us again and again, as long as they live on this earth, and we can never know what the next surprise will be or when. Samantha's 5, and I'm always comparing her to other children, with and without Ds. I know I shouldn't, but it's something that as a parent you just can't help. But what it all boils down to is how much love we shower our children with. There's nothing more obvious about a child than how well they are loved, and Lily is so very loved.

Wren said...

That last picture should be framed...it's so great! Lily is doing amazing and she will talk I'm sure of it! I remember after Sutter was born and our pediatrician said "he may not ever walk or talk, there's just no guarantee of it with Ds" and I thought to myself YES HE WILL! I didn't know when (and I still don't) but I know he will and so will Lily!!!

Rose said...

Oh Patti, it sounds so similar but of course different. The bus hit me last week. it hit me hard, it had me scared and questioning if I had enough faith. (Whatever that means) Just because I let other people expectations become my own. I was torn between doing what i thought was best and what others thought was best. One phone call and great words of wisdom brought me back on track. Thank goodness i called the right person(my mom) and didn't freak someone else out with my tears!
And who cares if he is not walking NOW, or standing NOW, or using words, or any of those others things! My kid is pretty darn smart, and is amazing! AND he will do it, just when he is ready (he is a little stubborn..) And so will Lily!
She amazes us all! She is too stinkin cute and SMART. And we will all celebrate when she decides to amaze us.

Elisabeth said...

Thanks so much for sharing today. This post came at the perfect time. Wesley just had his annual evaluation with early intervention this afternoon, and as usual, I left the meeting so very thankful for all of his therapists who care so much about him and desire to help him as much as possible, but also discouraged at how vast his delays seem to be when they are written out on paper.

After reading your post, I will fight to think on what is true and lovely. God has blessed us with a wonderful son, and he will meet all the milestones that God has ordained for him in God's perfect timing for his life.

Patti said...

Wren- Sutter is just flat out amazing...I always want to email you - AGAIN- and ask if you're really sure he has Ds ;)

Rose and Elisabeth - writing this all out helped me to keep my perspective too... hugs to Benjamin and Wesley!

Jaida said...

Oh boy...I have been down that road many times myself. It took about a year to stop comparing my son to typically-developing kids his age; he's 4.5 now and I still struggle with comparing him to other kids with Ds his age and relative strengths and weaknesses.

I also think that there is such a tremendous (and worthy) focus on allowing our kids to completely maximize their potential that it puts a lot of pressure on us as parents. You hit the nail right on the head though, our job is to help our kids become the best version of THEMSELVES, not achieve every single thing that every person with Ds achieved before them.

Thanks for sharing.

cara said...

I think these are my favorite pictures ever!!!! They just keep getting better and better. And Lily cannot get any cuter- she just melts my heart. I know I say that ALL the time.

This was exactly what I needed to read today for many reasons. I was actually comparing Benji to a "typical" child in my nursery class that is walking and dancing and climbing slides, etc. Now, why in the world would I choose to compare him to him?? And I have been praying to take all my thoughts captive as I do not think on tomorrow for some other things going on. This was just beautiful as always Patti. You minister to my heart. Thank you!!

Anna Theurer said...

The "comparison bus" is difficult to avoid. . .even when one is trying so hard. I know not to compare Ellie to other "typical" kids, BUT it is so HARD to not compare her to say your Lily or another child with Ds. The thing that I used to tell my patients (back when I was practicing) when they would compare siblings to each other is "do not compare at all, but if you must, compare your child to him/herself". Look at Lily today and look at Lily a few months ago. Just look at how far Lily has come! She is a super star and doing SO many new things.

You hit the nail on the head "you are happy and loved....I don't want to miss one single beautiful moment of who you are today by grasping at who I hope you are." Afterall, that is what we want for our children--to be happy and to know that they are loved.

Love love love the photos of you with Lilybird :-)

Fingerprint necklace arrived in the mail today. It is beautiful!

Ginger said...

I have struggled with this mightily w/ my adoptees. Because of the malnourishment they experienced the first 2, 6, and 9 years of their lives, they do not learn as easily as their siblings. Learning to read was SO HARD for them, I wondered many times if they would ever read. I thought many times: I just wish someone could tell me if they'll get it eventually and I should just keep at it; or if it will always be hard for them and I should just relax. I cried to my hubby: I don't care if they learn math. They can use a calculator. I don't care if they don't understand the history timeline, they can look it up online, but THEY HAVE TO READ! After 4 yrs of instruction I finally realized that they have learned how to read; they just didn't do it the phonics route, which is completely foreign to me. Who doesn't learn to read via phonics??
How much time and tears I wasted comparing them to who I wanted them to be. I didn't want learning to be hard for them! I didn't want them to struggle!
But you know what? God has worked patience, endurance, and tenacity in my children who don't learn easily. They testify to all He taught them through their struggles. God was glorified through it all! That's all I could ask for.

Heidi Ehle said...

It is hard not to do the comparison thing...even when you want so much not to. Lydia has a cousin who is two months younger than her and although I don't necessarily compare milestones, I have found that I feel sorry for myself (and Liddy) when at family functions he's passed around to everyone, while Liddy tends to scream bloody murder if anyone gets close enough to her that she even thinks they might be trying to touch her. But you know, the last time I broke down and gave in to that poor me attitude, Liddy proved me wrong. She spent the last family dinner on someone else's lap the ENTIRE time!
That's what I get. ;) Keep the faith. Lily is Lily, with her own quirks, her own motivations, her own personality. When she has the right motivation, she's going to blow your mind! Who knows? Maybe she'll look up at you one day and just bust out an entire sentence. :) Wouldn't THAt stop the bus entirely? lol
Hugs to you and beautiful Lily! xoxoxoxo

Heidi said...

those pictures and you and Lily and sooo beautiful!

Jane@flightplatformliving said...

crying again! you get me every single time! your words could come straight from my own heart...ive built barricades around our house to stop that blasted bus slamming into our home!lol. your writing touches me so deeply...''i dont want to miss one single beautiful moment of who you are today by grasping at who i hope you become'' ...oh boy that has me doing the ugly cry this end! just beautiful and to be carried around in my heart forrver. i am so glad i found your blog patti, it is such a big part of my life now. love from the uk xxxx

Karen said...

Patti...I love this post!!! Thank you! We are friends of Patsy's...you mentioned our needs on a post a couple of weeks ago:) Thanks btw!:) I was just on RR and was on the page for our son's Reg. (5). I am trying to get some updated info on listed children while we are here and have an email into the ladies at RR. I clicked on Artem and was smiling when I realized it took me to you:):) Do you have any info on him? And btw...your little Lily really is perfect!

angie said...

Oh Patti, I completely and totally understand where you are coming from. My youngest (of five children) was born with neurological problems and had surgery at 16 months. His development ever since has been so slow. Like your family, our older children developed within normal range of other children their age, so I feel like I'm just muddling my way through, not quite knowing what I'm doing. We've been doing various therapies doing a pretty good job at accepting our situation as it is, but boy, can it be hard sometimes! Our son is almost four, and we have several friends with boys close to his age, and I get caught in the comparison trap constantly. I embrace the cross that the Lord has given me, but I am only human, and it can be downright scary. The funny thing is, if God spoke to me and gave me the option to change my boy and have him be just like all the other kids, I don't think I would do it. He is completely precious and special just the way he is. You are in good company Patti. Thank you for sharing this because just this morning I was having a frustrating moment with my son and starting thinking, "Why has this happened to me?" It's so good to have these reminders to remain thankful for the blessings that the challenges bring. God bless you. :)

Regina said...

I am not quite as far along in the DS journey as you are but I definitely know where you are coming from. Thank you for sharing your thoughts and making others feel less alone. I am so grateful for the support I find online. Lily is so incredibly beautiful and very engaged in life. She has so much love and happiness in her life and those are the most important things you can give her.

Becky said...

I have been thinking about your post and had to come back and tell you Lily will do all these things. I can see it in her eyes and all she does. She is so smart. I had a therapist tell me my daughter would never talk because she was so quiet at a year, having been just fitted for hearing aides because of her hearing loss. But, at four, her speech is improving almost daily and music to my ears. All typical kids do things at different times...some earlier and some later. So do are kids with Down syndrome! I sometimes forget that. My daughter has taught me so much about patience because she does things on her own terms. But, she, just like Lily, will accomplish many many things because we believe in them and expect great things!

Lizzard said...

Your sweet angel is soooo beautiful.

Katy said...

(((Patti))) So much more I want to say, but the words won't come right now...

Melissa said...

Those darn comparisons! While I am over the grief stage of Ds, the comparisons still hit me too. A friend posted on FB something her (typical) child said and I wondered if Claire would ever say something like that, if she would even get it. These are times I look at her extra chromosomed peers and I am a little jealous of what some of them are doing. But there are other times that I don't mention what Claire is doing, because I know some of her peers aren't...I guess what it comes down to for me is celebrating ALL accomplishments, no matter whose they are!