Saturday, June 4, 2011

the big picture

Dear Experts,

I'm writing to you because of some things that have surfaced in my thinking after you saw my daughter last week. And I know I'm going to sound like an overly-protective mama right now. But at the risk of offending- that's my job. I'm Lily's defender and protector, and if I don't wear that title proudly, who will?


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I know that you are well-versed in the things my daughter "should know." I realize you went to school to gain that knowledge, that you were educated with that goal in mind: expert. I understand that as a mother there are things I might overlook that may need attention, and that as a parent, I tend to be a bit biased when it comes to assessing my daughter.

So I hesitate to say it, but I feel it must be said...


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You got it wrong.


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In your eagerness to find out what Lily couldn't do- point to an object and name it, call me from the other room, crawl and stand and pull a peg upward from a board- you missed what she can do.


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I tried to tell you, as you rattled off your list of milestone questions in a tone that said she was predisposed to failure.


"Does Lily ever point to what she wants and verbalize a desire for it?" you asked, clipboard in hand and a concerned look on your face.


"Well no, but she reaches for her baby and cuddles it like it's real. She can pick a cat out of ten flashcards with no prompting--"

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"Does Lily offer to share her food with you?"


"Umm, no, but she loves to eat everything- oatmeal, apples, thai food, lasagna- I don't think she is interested in sharing her food---"

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"Does Lily always pick up tiny objects like that- a raking motion rather than a pincer grasp?"


"No, she does typically use her index finger and thumb," - (except for when you quickly took the sugar pill off the table just as she was about to grasp it, and replaced it with another...smart girl, she knew she'd better ditch fine motor skills for swiping if she were going to beat you to the task.)


"Does Lily use any words for specific objects?"


"No, but she does sign 'all done' and 'more' on command."


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I think you missed her signing those words, right on cue as I said them...you were busy making notes on Lily's chart.

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We waited several hours past Lily's lunchtime for different experts to take their turns with us. And each one of you was so kind and understanding when Lily didn't want to perform anymore...(I don't know that I would feel like cooperating much if I was in her shoes; tired and hungry while being poked and prodded and examined by strangers for several hours.)

So it wasn't your graciousness or "bedside manners" that rubbed me wrong.

And maybe it is a bit of defensiveness on my part for thinking you missed the big picture. After all- you were just doing your job.


But what I wanted to say- am saying now- is that my Lily is a person.


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She is not defined by checks on a piece of paper or a line on a graph or a statistic in a textbook. She amazes us every day with what she can do, and I wish that there were a blank page next to her name instead of standards and achievements someone else - an expert- decided were important.



Because we could fill that page up with what Lily can do, could write a book on all that she's done in the 16 months that she's been a part of our family, and we still wouldn't be done telling about how she's changed our lives.

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And where is the chart for charming stranger's socks off with one crinkly-eyed smile in less than 5 seconds flat? Or the graph for how quickly she can wrap an entire family around her crooked little finger just by pointing to our noses when we ask? And how about the fact that she defied the odds and survived life inside the womb when so many babies with Down syndrome don't even make it that far? Or what about the people whose hearts she's touched who never knew what a blessing that extra chromosome could be before they met my girl? Who could measure the impact her life has had on children like Olga and Peter and Kareen?


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But there were no charts for those accomplishments. Nothing to record the measure of Lily other than a list of milestones she hasn't reached yet.



I understand the need to educate and strive for more. I do "get" that there is a need to document and evaluate and discern what developmental steps are in need of improvement.




I just wish that somewhere in the mix there was a view of the person as a whole. Not just missing parts or gaps or lags but maybe a better look at what Lily can do, and not what she can't. Maybe somehow we could factor in that each child- typical or otherwise- has their own learning curve, and that some of that is just hardwired and no amount of therapy is going to change it. We can do everything we know to do to help Lily to learn, but at the end of the day, it really doesn't matter to me when she walked. Or how many pegs she could pull out of a board.



At the end of the day, after I've taught her all I can, and given her everything she needs to grow and learn and be, she is - in the words of a very wise man - going to be just fine. And no team of experts will be able to convince me otherwise. Even if she doesn't share her food.



Oh, and by the way- she shared her cookie with me yesterday...right after we left.


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Just in case you wanted to make a note of it.

Sincerely,

Lily's Mama

54 comments:

Jane@flightplatformliving said...

beautifully said and utterly true! xxxxxxxxxxxxxxxxxxxxxxx

Becky said...

I agree...so beautifully said. Educators, evaluators, therapists, teachers have to use those checklists to do their jobs. But, those checklists also put our kids in a box and take away the beauty of the individual and the ability to show "what has been accomplished." Those checklists create barriers at times. Those checklists sometimes hurt us because they miss seeing our kids as nothing more "than another kid with Down syndrome who cannot meet all the milestones." Lily is doing amazing and will continue to do so despite those silly checks on a sheet because she is surrounded by the most important thing....the wonderful love of a family!

stephanie said...

BRAVO!!!!!!

Rochelle said...

I think you earn your mama badge! Love you sister! Hope this wasn't at a ds clinic somewhere! Ouch!

babypelly said...

Thanks, Patti!! I have been trying to articulate this for a year.

Chromosomally Enhanced said...

so good! I think it is a wild ride when a dr thinks that all kids are interested in the toys and flash cards...and then does not get when my child is just not into it...I am not sure why they do not ask us to bring our kids favorite things to help them succeed...and as daunting emotionally this is on us...it is hard on our kiddos..Maddie is a very strong willed child...she will not do anything for anybody...if she is not into it or if the person doing the test is unlikable...great post!! Lily is to stink'n cute...smiles

cathy said...

Touche

so sorry you & Lily have to go through that "assessment"
It's a blessing she is too young to understand what they are asking

They should know what Lily HAS accomplished & how many lives she has helped --

xoxo
cathy

Race Bannon said...

Hey Pat, this is (one of the many ways) where you and I differ...I would have answered yes to all those questions, and then when the 'doctor' asked why she wasn't doing it right now, I would have said, "She gets really timid around people whose eyes are way too close together...". It could work with any trait he had...

...or you could say, "She has a strong sense of smell, and your fowl breath is probably just overwhelming her."

That way, you would have got something out of the appointment. I'm just sayin'...

Amy, a redeemed sheep said...

A hearty AMEN!!

I think Race has a good idea. Try that next time...

=D

laurahlj said...

Wonderful post! Thank you for sharing!

Becca said...

Perfectly said! What was that evaluation for, anyway? And, ummmm...my daughter didn't use her pincer grip until she was 2 1/2. Now fine motor is one of her best skills. Go figure.

nicole said...

"The insight of the most skilled doctors can't compare to a mother's heart." ~ St. Therese of Lisieux (the little flower)

mrmeadowlark said...

I have always been of the mentality that the Experts don't necessarily know everything, and some of them know nothing. I know from my experience that the experts on Aspergers were so, so wrong about me. I know Down Syndrome is different from Asperger's, but don't ever let anyone put your child in a box.

Danielle said...

I suppose this is just one of those things that will be "learned" or "observed" over and over again in Lil's life... I remember your testing last year - and you said she came home and did two or three of those exact things she couldn't do at the testing. She will amaze us all in her own way. She has changed so many lives and I'm assuming as you wrote this post you processed thru those things. I think your blog is like therapy (: not just for you either! Love you Patti! Love Lils. She is a gem and a little overachiever in her own ways!
P.S. Race seems to be on track I think (: if you didn't truly care about that the results said! he he

momof4inNY said...

I will never forget the day at a CSE meeting when a school counselor read from a book, telling me what a child with Cerebral Pasly can do. I stopped her mid sentence and said, NO, let ME tell you what my child with CP can do! Wonderful post:)

Ashley said...

Well said, mama! I feel the exact same way. I don't want my baby sister to need therapy or need to be "assessed". To me, she is just a normal baby. Sure, she may not be doing everything else that a "normal" baby is doing at her age, but she will catch up. Her and Lily are each not far behind in their milestones, and they will get there IN THEIR TIMING. What bugs me the most, is when Laura DOES know how to do something that's on the "chart", but the "expert" won't check it off because Laura won't do it on command. If she can do it, she can do it, right?
Love you and Lilybird so much!

Mrs. K said...

Race Bannon came from my loins, has my genes and yes...I would heve loved to have the presence of mind to say exactly what he would have said. Just remember: they are only doing their job the way they were told how to do their job. It is a job to them....nothing personal....I'm just sayin...

Patti, "Mother knows best" is not just a phrase from my mother's lips or a song from the movie "Tangled" it is oh so true...Mother Patti, you do know what is best, do not worry about how those white coats measure progress. They are not with our Lils 24 x 7. They go by charts not hearts.

Justylou said...

My son is now 11. As we go through his education and developement. I also do NOT want to know what he can not do. I want to know what he CAN DO! And he can do anything he sets his mind to. It may take hime longer, but he can do it. We do not let the school use IQ tests for school. He does not need to be compared to the "norm". He has his own norm.

Thanks for sharing and hugs to Lily,

Be gentle.
Shannon

Mrs. K said...

Oh forgot to say....I LOVE, LOVE, LOVE the bathing beauty.

Anna Theurer said...

Well said Patti! I always hate those developmental milestone questions and I have said so to the nurses at Ellie's pedi. I ask them for the clipboard and then I checkmark what Ellie CAN do. At Ellie's last assessment, I actually learned that Ellie could identify "hair" on the baby doll. I didn't even know she could do that!

Dr. Army Wife said...

Thank you for this post. This isn't the type of stuff I will be doing in my medical specialty (emergency medicine), but I think the general concept is always applicable. Its easy to forget sometimes that the way you ask questions may not be the same as the way the patient or the parent interpret/feels them. I love reading stuff like this because it helps me think about the way that I talk with and assess patients. I always appreciate it if someone stops me and tells me that I could say things differently. I once had a woman stop me mid-assessment in the emergency department and tell me that the way I phrased a certain (necessary) question could be off-putting to some people. I appreciated that and I now ask it in a completely different way.

Perhaps these assessments that you are talking about should always be started with "So, tell me about all the amazing things your child CAN do!"

Patti said...

Dr. Army Wife- YES!

Brother- this is why you need to move to Oregon.

chambanachik said...

What a powerful, emotional post.

Ginger said...

I remember when my group of friends and myself were all new parents and someone would rattle off their child's percentiles as if it meant their 90th %ile child was so much better than someone else's 50th %ile child. I was thinking: "Um, that just means your child is taller or fatter than hers." lol

May I ask: Do children w/ Ds *have to* do all the therapies and such? I just don't get why I couldn't do all that for my child if need be. Please educate me. Tell me what I'm missing.

Leslie said...

Hi there all,

I am a therapist myself (and not a parent yet), and I am very, very firmly entrenched in focusing on what kids CAN do. I instruct my other staff when we write our reports exactly to this regard, noting as you said that professionals are constantly focusing on what kids can't do, and that parents really don't want to read a whole report of "can't do this, can't remove peg, etc.". I don't want to read it. I also do give written credit to kids as part of the report so that it is a joint effort, not me and my opinion. So if you were telling me what Lily could do, I would include that in the report, noting that I hadn't gotten a chance to see it, but that you had seen it several times (or all the time, or whatever). I know there must be some other therapists like me out there!

Unfortunately, I am required by state law to document somewhere a reason for services, and so that forces me to at least include a few points about what a child is "not yet" doing. I always phrase it like that, which my families have told me they appreciate it. I do still have to document that though . . .

And, to Ginger: my answer is a firm no. You do NOT need to do every therapy under the sun. I wish some of my families would actually do fewer therapy appointments and more playdates or time with friends and family. There are definitely things you can be doing with your child in day to day activities and that is the whole point of what I do; I prefer to consult with families and give them ideas to incorporate into daily life, rather than schedule more therapy sessions. We all learn better in real life experiences. I see some kids who are so zealously overscheduled for therapy appointments, they are just plain exhausted. So are their parents. While some exhaustion can't be helped, and therapy appointments definitely can be helpful and are a needed support, I am absolutely confident that there is such a thing as too much therapy. So feel free to be wise, and maybe see one of the specialists only once a month, another one twice a month, whatever you need to get ideas and monitor progress and make suggestions. I'd love to be working with you and have you do things with your child that encourage both of you! :)

Alison Darty said...

I think this is a post I was needing to see today. I love you both so much, words can not describe how much Lily has accomplished on my checkboard of life.

Annie @ The House That Jade Built said...

Very nicely said!! I am nervous about these - we only had ours at one month of age when Miss O slept all day long. After her surgery we start our meetings & then our therapy! I'm praying all runs smoothly so I don't have to break out my Mama Bear. They already evaluted her as 50% behind...and she was comatose the entire eval - how can you say she's behind when she doesn't even wake up to show you what she can do - ugh :(

We have one therapist that comes every 2 weeks - she's more a nutritionist & I LOVE her & she loves Ollie. She's always bragging her up - it's fantastic! I hope the rest are like her!

Janie Fox said...

right on Mama! So true and so good!

Laura said...

Wow! What a post! And you are so right in your thinking.

I remember thinking through some of those same things a few years ago - like: "Who cares? What does it matter if she can't do ____ right now. It's not like she never will. Just give her time..."

Thankfully, we have almost exclusively had therapists or doctors who are very interested in what Mylie CAN do. That is always included in every report. There is a paragraph of things that she does do (either that they observed or were told by me) that precedes the list of things she needs to work on.

And as we have gotten a couple years down the therapy path, we have figured out which ones we needed most and how often. You can get so overburdened with all the appointments if you aren't vigilant about putting all of that in its place. We have gone to each of them at different times and expressed the need to see them less often or take a break and they have always been very supportive of that.

We had to learn to just let her learn at HER pace. She always gets EVERY skill - just on her own time table. That learning took place best when surrounded by a normal family atmosphere as opposed to hours of therapies. Not saying therapies aren't helpful or important, but I have found their value to be in teaching me as the parent what to work on at home or how to approach a particular skill.

We love our therapists and that they respect our need for room to grow, time to learn, and need for normalcy in our routine! They have done nothing but encourage us! They have stated that the best therapy is an involved family!
And in that, from what I read here, you are blessed!! So trust your instincts. She will be smarter and richer in love and life than any chart can ever "predict."

Patti said...
This comment has been removed by the author.
Susan said...

Have you read this article about a homecoming queen who has something in common with Lily? Grab some tissues

http://w.espn.go.com/espnw/mobile/touch/news-opinion/6594902/an-unforgettable-night-unforgettable-girl

Are you sure we're learning here? said...

"Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will spend its whole life believing that it is stupid." ~Albert Einstein

Jen G.
indy, IN

cara said...

Wow! This was an excellent post Patti! You always know right when to put something out there, what to say, and how to minister to others. The Lord is using you this way.

I LOVE your title on here- the big picture. That is what it truly is all about. I have been wondering lately how much is too much for early intervention for Benji?? I really feel that we (his family) are his best therapists. Although, I have learned much from his therapists and love them all. Right now, he sees three therapists a week, and they are getting ready to add a fourth. It has been hard with our homeschool schedule and everything else in there. I was feeling bad if I refused this service with people that just want to help him. This gives me a whole new perspective. Although, he adores all his therapists and enjoys the time. He is a little charmer to them. I may need to simplify. The same with all of the specialists he sees. Some he must see- like his cardiologist. But so far, I am not really sure what his ENT is doing. We will see if it helps on the next visit. I have learned that I must be his advocate and know what is best and what is not. The last time he got SO sick with a lung infection, he had to get antibiotics again. It broke my heart, and he reacted really bad to them. They were going to have to move him again to something more potent. I took him to church for prayer- we laid hands on him. He was healed. God is good.

We like to focus on what he CAN do as well. I have always felt that way with all of my kids. I never liked comparing them to a chart. Abigail could not walk until 18 months. She could not even pull up or crawl or anything at 12 months. And she is a so called "typical" child. Now, she is running and jumping and playing and our strongest child. She was behind Benji at the age he is now. He is much stronger than her at 13 months. The big picture is what we need to be looking at and evaluating why we are doing what we are doing. What is the big picture? How important is this in the scheme of their lives? Lily is being use by God and He has her right where she was created to be.

Thank you Patti!! Love to you. Cara

Deanna said...

I always feel the same way after those meetings. I understand that they are trying to help her to the next step, but come on. Just like you said- she's a person and has her own strengths that won't be found anywhere on the stupid clipboard. 100% with you there...

Mama Keene said...

Such a beautiful post, and I think your daughter is beyond beautiful, and when I see pictures of her adorable little face all I can think is, she is so cute I just want to give her a big squeeze! Only you her Mama knows best, and in my opionion it looks like Lily is doing fabulous, and is a perfect little baby girl, nothing less!

Becky said...

I know I already posted a comment but I keep coming back because I love the discussion this post has started. How much therapy? What do you do as a mom? Checklists that drive you crazy? Evaluations that make you stress...I get it all. In fact, one of my posts in my blog I talked about how I tackled therapy and other things that worked for us. I always love advice, so if you are interested here is the link:

http://ebeaubien.blogspot.com/2011/03/what-has-worked-for-us-so-far.html

Patti, this was a great post. You have an incredible blog.

Susanna said...

You hit that nail smack on the head, my friend!!

I am bracing myself for V's one year eval, and have already told her OT and PT what I do NOT want to hear! Comparing my child w/ Ds with a child w/o Ds? We don't DO that to her, and never will.

Ginger, we have an OT and a PT coming separately every other week for an hour each. We think of it like piano lessons. They work with V. to see where she is in what she's learning and tell us how to practice in between visits. We fit the work into our family's routines every day. It doesn't seem overwhelming to us, partly because so many hands make light work. :)

Jenn W said...

i never ever want to forget the message of this post. it will definitely influence me in my career with special education.

Rose said...

Love this Patti!
This was my biggest fear after I had Benjamin. That he would be viewed by 'inabilities' and not by the perfect little boy that he is inside. LOVE LOVE LOVE this would love to print it out and hand it to the 'professionals' that put him in that little checkbox! Of course I am grateful for the help and I have learned so much, but please, first look at him, right in his eyes and see what he can do!
He cant do a single one of the requirements that you listed. but I'm amazed at the things he CAN do. The kisses when he is trying to charm you out of saying no, the snuggles and squeezes when he knows its bedtime, how he repeats an action (open and closing doors....etc) cus he just learned it and thinks it is soooo amazing and when he catches you looking he responds with the biggest grin cus he is so proud, the way he stops in his tracks when you say 'no' then turns and smiles like 'you didn't say that to me!!' I could go on!! So glad his EI PT see's all the things in him that I do and we spend NO time talking about those checklists.
Lily is amazing!!! She amaes me every day, and Benjamin is trying to keep up with her. :)

Being a mama is amazing. it bring the mama bear out, and I learned from the best!
Hugs

Joy Montejo said...

I just recently started reading your blog through another blog when you posted about Albina. Our son with DS passed away last year due to an unknown virus he couldn't fight because of his heart defect. He was 1 week away from 1. I am so enjoying reading here. It has validated so many feelings I went through when our son was with us. Thanks for your transparency!

Bear Creek Mama said...

I was going to tell you how beautiful this post was - but I see I'm not alone :-) What an amazing heartfelt reassurance for all mommies.
Are visits to the experts "mandatory" - maybe staying away would be the way to go for the future :-)
You are so incredibly blessed!

cathy said...

Wow Patti---your responses were amazing, continue to move mountains, my dear friend

xoxo
cathy

Ellie said...

I just loved this post. Thanks for giving me an excellent role model for protecting and defending my child with that something extra special. I will be ready when Carmen finally comes home!!
www.moveanymountian.blogspot.com

Rachel said...

Wish those people could read this post and learn?! I always feel like we celebrate what Aubrey can do first...and then they do ask the tough questions, because it is there job and because it is "the checklist". It is hard to swallow even when your child is typical (and not rolling like she should). I think that we have surrounded ourselves, like you, with so many people that celebrate Aubrey, that I have been able to brave the few things that are set up in the world for typical kids and not her. I have learned to move on from the conversation...much like her ECI eval forms that tell me where she is at. It is necessary, so that she can continue to get her therapies, but not important...and that is how I try to see it...necessary, but not important.

And by the way, on her evals, signing counts as language! Even though she only has about 5-10 SPOKEN words, she actually scores in the TYPICAL range for her age since she has over 200 signs! I love that they give her credit where credit is do! And Lily should get credit too!

Jenny said...

I cant even tell you how much I LOVE this post!! After Russells evaluation the other week THIS was what I wanted to put into words but didnt know how! You did it for me! No Russell cannot pull that stupid peg out of the board, and no he doesnt point to things he wants...But he does so many, many other things...And you know what gets me, some things they wont even give him credit for doing or knowing unless THEY themselves see it...As though they dont think it could possibly be true! Pisss me off. Anyway, beautiful post, I loved it :)...Oh, and I loved Lilys bathing suit too! So cute!

Ginger said...

Thanks for answering my questions, ladies. I was a Speech Pathologist in my prior life and it used to really irk me how many families would have me come out twice a week to work on their child's articulation. I was thinking: Good grief, I could teach you how to teach Johnny to say R yourself if you'd just stick around.
In my experience, most parents are just totally dependent on the "experts".
I didn't realize how infrequently you ladies (Patti & Susanna) were doing PT/OT. I never had a client that I saw less than once a week; it was almost always twice a week, so I was imagining an awful lot of therapy sessions and the time that would consume.

Jenn said...

Well, we just came back from a team meeting with OT/PT and speech today. Jack is 2.5 and doing so well. I remember the performance anxiety I use to get before going to one of these meetings until I actually communicated how negative an impact these "checklists" or age related "milestone charts" where having on me. From the moment he was born it seemed like there was a list of superficial items that labeled Jack "deficient"...always something to work on or improve because he was "behind" other children. So my sensitive and profession OT took out the checklists and began focusing on what Jack could do and what he was working towards and made all the other team therapists do the same. Thank you Carol! This helped me focus on the positive more instead of always being in the negative. After all, Jack is our super star and he can do amazing things. He will do all sorts of things in his own time. Getting rid of the comparisons and focusing on the next step has made life more peaceful and positive for our family.

I have wanted to quit therapy sessions all together too. But it is hard to do because they do give you ideas and strategies to use. I guess I would say that I got better at communicating and managing these professionals to reach the goals we saw were good for Jack. Keep persevering.

Ilisa Ailts said...

Sad but true.

I keep thinking it is about what Calvin can do, not what he cannot! There are lots of things I cannot do!

Lisa said...

Love this. It really touches me in a sensitive place, as my son Finn is currently undergoing the assessment process by the school district as part of the transition from early intervention, and it's been extremely frustrating and disheartening. You put my feelings into words much more beautifully than I have been able to.

ain't for city gals said...

As I was reading this I was thinking "Does ANY two year old do any of these things"? And then I read Lily is only 16 months!! I mean really...get real experts!

aly win said...

i love your spunk momma !
and that lil jab at the end ... that was a knock out punch :] you go girl ... AND YOU GO LIL LILLY !
much love :]

obviously__me said...

As i read this i was Crying...not only because im pregnant and horomones make me cry at commercials but because im reading this with the same experiences with "Scientists" treating my son like a guinea pig instead of my beautiful boy who i want nothing more then for him to be respected as a human and not another interesting case. I recently went to the genetics people in our area as we have genetic counselling for the new baby...they ignored the fact that i was pregnant and starting asking about all the things Bryson doesnt do...it hurts my heart everytime they go through a list of things hes not yet met and makes me sick to think about how his love for us isnt a check mark on that list...the fact that he will hug us, kiss us, and slap us when hes mad like any typical 20 month old means nothign when he cant walk has limited speach and doesnt enjoy being forced to profrom like a circus animal to prove what he can do...lets sit back and watch for once...thats what i do and i see that he talks to his toys in his own language and stacks his legos 10 high...ask him to do it and guess what he has a mind of his own and this monkey wont dance on command just like any other 20 month old. I really appreciate reading your blog and knowing i truely am not the only one feeling this way about my BLESSING. I love what you said about sharing food...Bryson LOVES to eat and after fighting with the NICU people about how much he should and shouldnt eat for the first 5 days of his life nothing is better then watching him devour food and yell when you sneak a bite of his dessert :D.

The Sanchez Family said...

This is absolutely SPOT ON! I LOVE it Patti. So well put...and Lily is too darn cute for words!!!

amber malmberg said...

That was a great post, and I loved all of the comments too! You have a beautiful little girl!