a quote from the movie that makes my throat catch each time i hear it: “i tortured myself thinking that in order to fully love her, i needed to be able to understand her head.”
we walked in and saw coach elaine right away. i kneeled down and said “mckenna, this is coach e!” and mckenna said, “hi coach e, my name is mckenna, nice to meet you.” and walked right into her arms for a hug. coach e looked at me and said “ohhhh this made my entire day.” i introduced myself.
they ushered kenna into the room for coloring and i filled out paperwork and sat with her for a bit. i selfishly, oh so selfishly, wanted to stay and watch every single second, but they preferred that the parents not stay, so i left and walked around the third street promenade for a bit.
the last 15 minutes of class they share with the parents and caregivers what they learned. they first had to introduce themselves, describe what they had drawn at the beginning of the day, and then show everyone their art. i walked into the room just as it was mckennas turn, so she didnt see me when she said “my name is mckenna whitney. i colored this beautiful sun, and this duck.”
i swelled with pride and tears. i am a basket-case! and tip-toed around to find a spot to sit.
then they got to show the group how much they learned in one day, and of course our mckenna was front and center, singing loud and proud, already memorized the words and movements. more swelling with pride and tears. i was embarrassed at my over emotion. all of the other parents seemed like they were taking it in stride!
the first song they learned was “who am i?”
some of the words:
who am i?
its not what you see.
gotta take a chance
to get to know the real me
i am happy
i am proud
i am FUNNY
i am LOUD
etc
we finished holding hands in a circle and singing another song together, the perfect ending.
after it all wrapped up, cat the piano player and another volunteer (who ill get the name of today) came right up to me “are you mckennas mom? she is amazing. she learned everything so quickly. she is like a sponge! we love her! are you local? can she sign up for the program that starts in september?”
i wanted to cry all over again…i told them we are coming up from OC, but i am very willing to drive up once a week because i really believe this is so necessary and relevant and perfect…so we shall see.
couple of things-mckenna isnt actually diagnosed with anything. she is mentally retarded, which is a symptom caused by what? we dont know. there was a period of time that we were told she was on the autistic spectrum, and then another period of time we were told no, she was not. she is what she is, and no one really understands why. we are in the process of a whole new work up for her, but referrals and first patient appointments take a very very long time to get. the miracle project is for all types of kids, special needs and their typical siblings.
if you want to check out what emily and i were up to last weekend, go here. more on that later…
ill be taking the rest of this week off of work since my whole day is taken up driving and waiting…but i am always available via email if any prior or future client needs to get in touch with me, ill do my best to respond within the same day!
So very awesome. So glad to hear that it’s going well and McKenna is loving it.
It sounds like she loved it! I’m so glad.
as you know, i’m a big lurker. it takes a lot to get me to actually post something. oh, you know…say a trip to thailand. so, that being said….i’m posting again. so this is big for me! lol… i want you to know how in love with mckenna i am. i love this photo of the two of you. every time you post a photo of mckenna, her innocence….her beauty…it takes me breath away. you are an amazing woman and so is your daughter. amazing. wonderous. your post brought a lump to my throat. and i just wanted to tell you.
Tara, Thank you so much for sharing this! I’m emailing the info to everyone I know. My SIL is very much the same, just mentally retarded, no other place to put her in. Hers was caused by a bad strain of DTP vaccine. She is 26 now.
WOW…..all I can say is wow; sooo wonderful. Love that this fell into place for both you and your daughter……get caught up and take it all in. I sense its a gift for you both;) be well.
Oh yeah…cute skirt btw!
as a momma of a daughter with special needs/significant developmental delays, your last two posts have moved me tremendously (to tears, even — though lots of your beautiful photos do that too so …). even though my little girl is only 3, i can really relate to what you’ve written. i hope that when she’s old enough, there are programs like this here in kansas (and all over the country).
thanks SO MUCH for sharing this experience.
ps. i absolutely adore your photography. you’re extremely talented.
i am so glad mckenna enjoyed it. she is such a beautiful little person. i love love love the song. it got me teary eyed just reading about it.
hugs
ria
That is so amazing & wonderful! You’re all three totally adorable – including your skirt! :)
Oh Tara,
I have never met you, but I so feel like I know you. One day, after all of my little ones are grown, I am going to move to CA where I will stalk you full-time. OK, that’s just creepy…On second thought, I will only stalk you part-time. That’s better. Anyway, I will be praying for McKenna a little extra this week. I hope camp is even better than what you hope. In all of your pics, the sweetness of your family nearly oozes out of my monitor. Keep up the great photography. More importantly, keep up your great work as a mom.
love, lori in ohio somewhere
I am SO psyched to hear it went well, and look forward to further updates on your experience!
Krista
I am so glad you had a great time together. When God threw my special needs son my way I resisted it all for so long…why wasn’t he normal, easier, typical. After years of therapy I realize that the journey he has taken me on has made me a much better person, mother, photographer,(if I do say so myself :). I am thankful for who my son has led me to be and I am so thankful for him…I wouldn’t change a thing. Just be grateful for her wonder and her spirit(I can see it in your pictures) That will take you such wonderful places. Enjoy your journey together and hang on tight because you never know what is around the next loop on the roller coaster. I applaud you for driving her all week long and I know that feeling you felt when you looked up at her performing on the stage… I hope you can keep that image in your heart forever.
~Kelle Miller
you have my exact philosophy: She is what she is. they’ve been trying to diagnose my son with asperger’s for years. my thought is that we treat the symptoms right? it doesn’t really matter what their “diagnosis” is…just deal with the manifestations of their “issues”. if they rage in the middle of class (as my son did thru 1st grade), then deal with that. if they say completely inappropriate things to try to be included in a group, then deal with that. can’t read/can’t do math…they are all just individual issues that need to be treated.
love reading about your experiences on this.
–janice
I can’t tell you how many descriptions were given to my son, growing up. He is now 34, married, working and really happy. It doesn’t mean that it is easy for him, but we still celebrate the good things… take a deep breath through the tough things, and continue to appreciate the life that he has created for himself. I say “Go McKenna!!” – Celebrate with gusto… every chance you get. I wouldn’t trade one minute with my son for anyone else in the world. He is unique, creative, open to new experiences and trying hard every day to be the best he can be.
Your blog just touched me, especially because he left yesterday, after a wonderful visit… and we will miss him.
that is just so wonderful that you found this perfect spot for mckenna. i would have been a basket case too. crying all over the place, as i do over everything. my dad came in from cali yesterday and i hadnt seen him in months. i sobbed and sobbed as soon as i opened the door and saw see his face. anyways, have fun!
it sounds like the perfect environment for her! Glad she had a fun day :)
more and more tears spilling.
omg…i would have cried like a baby the whole time if i was singing in that circle!!
i love your daughter and i don’t even know her yet.
and i adore her mother…who has a heart so wide and deep and open.
so happy for you two.
xo
OMG you teared up in the room? DUDE.. I just walked into the studio with my morning coffee.. read your post and teared up… LOL.. I dont think you have to worry about YOU tearing up!
There aren’t words. I have been waiting for your ‘post update’ – I am just so, so happy for you guys. This sounds like a wonderfully, amazing opportunity for love, compassion, growth – you name it! I cried and I’m not even there! So I can only imagine your ‘in-person’ view. I can’t wait to hear more! (Is the documentary out on video yet, do you know?)
Thanks, I needed that. And you know what? It’s okay to be teary – I’m always the teary one, too, and it’s okay…I decided that about 14 years ago at Christian’s first pre-school ‘performance’.
I am so excited! :-)
Hello
I too have tears in my eyes as I sit at work, students are bound to come in soon and think I am silly…
loved your post even though I was teary, it made me my day.
Katherine
I’m so happy for you and McKenna! What a great opportunity. sounds like a great place to be.
Okay bawling here. B-A-W-L-I-N-G.
Yay! What an amazing thing that must be. How wonderful. Enjoy and embrace every minute of it…emotion, tears, all of it. Love your skirt too…I just got mine from her a few weeks ago and I’m loving it. I HAD to have one after I saw Em’s! :) xxoo
Oh Tara – I have tears in my eyes as I read this – sucha a special time to let her shine! I think THIS should be your OPAM for July! [Have you completed another?] Mine – getting my youngest [18 y/o] through having all four wisdom teeth removed yesterday. I was the basket case and he really seems to be doing pretty well. HAve fun this week and I hope the eq didn’t shake you up too badly -J
Tara!! I just wanted to write (i’ve been lurking for a couple years now) & tell you that YOU LOOK FABULOUS!!! have you lost weight? had a makeover? would you like to send me your entire closet because you are adorable each time i see you. and while you are sending me your closet, i’ll take your house too…because that comes in a close second to my favoritist thing about you :)
You seem like you’re bursting with pride and joy. SO happy for you and McKenna.
oh Tara, I love hearing you tell your story. God bless McKenna. And God bless coach e. I’m so happy they found each other.
Tara, that is fantastic! I am so happy for you and McKenna that it went so well. Congrats!
P.S. LOVE your skirt in the pic.
Tara – you educate me everyday and I appreciate it every moment. Thank you for being so incredibly human and showing us your life. You and your daughter are incredible people and my family is blessed to experience you.
Yea – you cried? Sheesh – I cried just reading.
And – how is it that you look so hot in every picture? – CUTE AS A CUPCAKE I say! I love love love your skirt in the pic on your blog and the pics of you and em – honey – you wear pigtails cuter than anyone I know!
H
these are all such lovely lovely comments-you guys are so wonderful, all of you!
another great day (i stayed in and took some pictures before leaving her alone) ill share tomorrow…jeff is taking her!
I just loved reading this Tara. I was so emotionally blown away by this post – your love and devotion is so clear. I’m so happy that she is loving it there.
Tara,
I have friends with a daughter who looks very similar to McKenna. She has been diagnoised with Rhett’s Syndrome by doctors in Poland.
Has any specialist ever explored this possibility?
Please e-mail me at my private e-mail for more information.
Hugs,
Margie
Congrats on what sounds like a huge success! I have been a reader of your blog for months, mostly just to marvel at your photography. (You are a big inspiration to me) But I am truly moved by you sharing this story with us.
All the best as Mckenna continues with this program!
Just coming out of lurkdom to say how thrilled I am for Mckenna and your family! I’m so glad you found the program for Mckenna, and that she might be able to continue with it in the fall. Congratulations!
I really can’t wait to see the musical, I have it in my netflix queue. While you are doing all that waiting why don’t you do some sessions, I am sure that you would find some takes even on short notice.
melts my heart…thank you for sharing!
glad kenna had a great day and by the sounds of it, it was fantastic for you too!
I love that you can do this for her, what an amazing opportunity. As a mother I don’t think there is anything more gut wrenching than having a child who is different in some way, who just hasn’t found that place where they can be who they are and bloom. No wonder you’re all teary-happy tears, relief tears, love tears- all those emotions are there.
Tara, congratulations on finding something like this!! My 12 year old daughter, who has high functioning autism, tried theater camp for the first time this summer. It seems to be a really good fit, though I can’t really explain why.
I am so happy for you and M. Enjoy the week and the time alone!
All the best,
Jen
Tara.. you are the most amazing Mom. If every child had a cheerleader in her corner like you, the world would look so different. Bless you for loving her like you do.
Tara~I have been reading your blog for a long time and I have to tell you that McKenna has always held a special place in my heart. Every single time I read of her or see her picture my eyes swell up with tears and my heart feels a little bit fuller. I don’t know why, but I love that girl. Maybe someday I’ll my four kidlings and I will leave our little town in Oregon and get to meet her.
Thanks so much for sharing. It is so wonderful to find something that clicks for your child and the mommy in all of us does a little cheer!!!! Keep up the great work! You make me smile when I see your pictures and read what you write!THANKS!!
I love this! I am so happy for you and McKenna and for what this will mean for her beautiful life!
Tara, I came to your blog to be inspired by your art and creativity in photography/crafting. But what I didn’t expect, and what became so much more, is how I am inspired by ways that you view life and your children, especially McKenna. I am a child psychologist, I have worked with many different children with many different types of issues….and you remind me and inspire me to first and foremost view each child as unique and gifted little people–not disorders–and to embrace the unique and creative things they have to offer, because they all do. You also inspire me to do that in my own 2 children. Thanks for the continuing inpsiration and perspective.
Blessings,
Nicole
Hey Tara,
I know that this is so not the point of this post, but I just have to say that you look incredible!!
Jayna
very cool Tara- good for McKenna! :)
i am so happy you both had a wonderful and blessed experience!!
i love your clothes and the pics of you and Em are gorgeous! :)
do you and em both have that awesome wrap skirt thing or what?? I saw her in that in some picture awhile back… hmmm…
amazing day camp you’ve got her going to, what a great opportunity, and you rock being so willing to drive up and back each day, way to go mom!!