"To become a real boy you must prove yourself brave, truthful and unselfish" Pinocchio
Can I just tell you how much I love this little boy. He amazes me everyday. Today he got 5 teeth pulled and 2 of them were way up in his gums. He sat in that chair, his eyes swelled up and he didn't shed a tear. He was so darn brave. Three hours later, he is up practicing his num'chucks, or whatever Power Ranger weapon it is. He says he's getting pretty good at them.
Today his cousin, Micheal (who is the cutest thing ever), came over and he's already walking at less than a year. Joe is ultra competitive and was begging me to say that he, Joe, walked first. I explained to Joe that we never knew for sure if he'd be able to walk. I told him how when he was born he may have had a stroke, we are unsure. I told him how we didn't know a lot of things.
But what we did know is that he did not use his right side much. David took him to Dr. and she simply said, "He has Cerebral Palsy" and then she walked out. We had no clue what that meant. And so we begin therapy that seemed to never end. I can remember at one time I think we went 4 days a week, and 2 of those days 2x a day. It was nuts. The best part for me and Joe was to see all the other kids and understand.
I was so mean to kids that were different when I was younger. I really was. I think it was because I did not understand. When Joe was about 4 I was putting his brace on his hand and he said, "Mom, I do not want to wear it, people will know". I could hardly believe it, kids start judging at 4? Now, I simply tell kids, "just like some of you have glasses cuz your eyes don't work, Joe has a brace cuz his leg/arm doesn't work all that well." and they seem to get it.
Okay, I am getting pretty long here. I need to get to the Cliff Notes. As we watched him sit bravely at the dentist we talked about how amazing he was. All but a few times that he's gotten botox (yes, it's used to treat muscles in CP kids), they'd roll him off in the little cart into the room and he'd look at us, but did not cry. All his long hours of therapy have made him so patient and determined.
So when he asked about Michael I told him, "Ya, Michael walks early but you could do puzzles like it was no one else's business". Julie, one of his physical therapists, once told me, every kid just needs one thing he can shine at. I couldn't figure out why she was teaching Joe to draw a traingle and a square when he was 3. She said, "When he goes to school all the kids we be cutting. Joe may have a hard time, but darn it, he'll be able to draw his shapes before anyone else. Kids need to have one thing to shine at". Man, I love Julie. She was also the first one to tell me I spoil Joe rotten. Which I still do.
You know, Joe having these issues has almost been a good thing in a way. It has totally changed me. I am much more undersatnding of others. I now know what it feels like to have people stare, they used to all the time when he was little. I remember one time I saw the sweetest baby and she had a huge birth defect on her face. She was so beautiful and I told the Mom how beautiful she was. The lady almost cried. I don't think she had ever heard that. She had only felt the stares. It sucks. People always say, "Well, it could be worse" and ya it could be. That is really a sucky thing to say, cuz it could be a helluva lot better too for so many.
Okay, now you all know how much I love Joe. He has just made me such a better person. Yes, even if he pushes me to my limit now and then.
This is such a sweet post. My older sister was born with CP on her right side as well. It never stopped her from doing anything! She plays frenchhorn, has 2 masters degrees, is an accomplished knitter and last year had her first child. When we were growing up I didn't even realize she had CP, my parent's never went on about it or gave her any special treatment because of it. It was just a part of life and we think it is what contributed to her competitive spirit (which has pushed her to achieve so much). I have 3 kiddo's and my youngest has Autism. Having grown up with special needs in our home it was a model for me on how to handle it. Today is Cooper's 4th birthday and he is a sweet and smiley boy. The love of my life. Anyway, your son should be very proud of all he has accompished so far and know that it doesn't ever have to hinder him, it just changes the way he may have to go about getting things done. He is really darling! Oh, my oldest girl Emma is in 2nd grade as well and loves his toothless grin!
Posted by: Katy Moritz | September 04, 2009 at 02:12 PM
If he wants to see blogs of kids like him, with the hand/fist, start with one of my good friends - http://www.lovinglia.blogspot.com their youngest daughter (adopted from China) had a stroke and has moderate CP. She has many links to other blogs of children adopted from China with CP.
I too have learned so much from Lia, and she has taught me much as well.
Posted by: Carla B | August 26, 2009 at 11:00 PM
OH my stars that was supposed to say,
I would NOT trade...
See one should never type when they're upet or crying.
Posted by: Lil | August 22, 2009 at 09:24 PM
I am on tears as i read this b/c in some ways I understand. I buried my first daughter Hannah and only months later along came a boy who was 7.5 weeks early who we call Chance.
He has faced so many challenges in his short life, many blood trans-fusions ,4 sets of tubes and yet he has very limited hearing in one ear, he suffer from asthma and is always getting sick, has a terrible speech impediment, obviously slower to learn than most and only the last few week have we learned that he legally blind in one eye and he may loose sight in the other.
How does one prepare for such a thing? I have been in knots about it, I have cried and make myself physically sick over it all and he is hugging me telling me sorry mom that you are sad. Are you OK. Can me help you? Me love you. Not a clue that I am heart broken over him, not upset that he is unlike the other kids, he doesn't care!
He loves MORE than any other child I have ever known ( I have 4) He is thankful and caring in ways that you can't imagine. I know that he is a GOD send. I know that it's not fair that he has to face these battle everyday or for that matter and I also hate it when people say " it could be worse" HOW DO YOU KNOW?
but I would trade this little boy for another one like him that's perfect for I know that I would love those things that MAKE him SOOO wonderful. I have never shared this story and I decide to do it on here.... Denise you are remarkable and words can't say what I mean when I say that.
With love.
Posted by: Lil | August 22, 2009 at 09:21 PM
Wow what an inspiration!! I saw Joe at 435 and thought "What a handsome and good looking little boy!!" I Never would of known that anything was wrong and that he's been threw so much! Makes you realize that things are not always what they seem and what people struggle with and go through to get to where they are at in there lives!
Posted by: Kelly | August 21, 2009 at 12:45 PM
Your a wonderful mom and an inspiration.
Posted by: gingerlouise clothing | August 01, 2008 at 01:23 PM
beautiful post
Posted by: Jen From Windy Ridge | April 04, 2008 at 01:24 PM
joe: the mightiest of acorns!
xo
esther
Posted by: esther | April 03, 2008 at 12:28 AM
WOW! What an inspiration! Joe and YOU! I love Julie the Physical Therapist too! All kids do need something, anything to SHINE at! And it's our job as parents to help them figure out what IT is. Thanks for inspiring me to the best Mommy that I can be. I kinda needed it today! (Now I am going to get a tissue...)
Posted by: Amy Jo | April 01, 2008 at 01:53 PM
Such a strong boy and such a beautiful family. Thank you so much for sharing this on your blog. You are incredible.
Posted by: Amber H. | April 01, 2008 at 09:35 AM
Your son is beautiful.. and that is why I would stare at him. I think explaining what your son has to other children it the BEST way to handle it. Funny thing is, i've found most kids will accept it with an explanation and it isn't such a big deal. I can relate to everything you said in your post...without getting to long, please read my latest entry http://www.jodiegoodison.blogspot.com/
I had to change my blog since the last time I emailed you.. Jodie
Posted by: Jodie Goodison | March 31, 2008 at 02:06 PM
Yea for Joe and yea for sweet loving mommies like you who are awesome. We love him too! Such a little boy on the inside and out! You guys are such a special family!
(PS I get SO excited when I see my pics on your blog. Thanks!)
Posted by: Betsy King | March 31, 2008 at 11:03 AM
Another BIG reason I love your blog so much. Thank you for being a source of inspiration and providing a way for moms to share their thoughts. My second daughter had a very rough start in life. Our experience has created a strength in me and a love for her that I know you and many of your readers can understand.
Posted by: Heather | March 30, 2008 at 06:03 PM
oh Denise thanks for sharing Joe's story. He is such a brave boy as you have said to come so far..and he is going to go so much farther with his talents! I know you are so proud of your little guys...it shows in your posts.
Posted by: Kellie H | March 30, 2008 at 01:35 PM
Oops - my first sentence was supposed to be - I have never agreed with comments before more.
Posted by: Lynn | March 29, 2008 at 10:32 PM
I have never agreed with comments before. My daughter, who adores clothing and LOVES anything Matilda Jane has had a lot of challenges. I think she is the beautiful little girl ever. However, she also doesn't understand why she can't keep up with the other kids and do the same things, and it is hard to explain why - especially because I was one of the kids who wasn't too understanding. She thinks everyone goes to Physical Therapy and hours of testing. I often wonder if it isn't a type of payback for my own actions. I love both my kids so much - but she simply amazes me - she is stronger and more compassionate and wise (at age 4 1/2) than I think I will ever be. I know she has been my angel - and it sounds like you have a special one too!
Posted by: Lynn | March 29, 2008 at 10:26 PM
tears. rolling. slowly. nodding. crying. so very true. They all need to shine and your little guy sure does!
What a brave kiddo ~ most adults would be weeping just thinking about the dentist pulling teeth! Great Job Tough Guy!!
So glad I stumbled upon you and your adorable clothing! another photog here, needing outfits! thanks for the post.
Posted by: nancyelizabeth | March 29, 2008 at 04:31 PM
What a little guy! The pictures of Joe just make me want to give him a hug. He is beyond cute! His sweetness shows.
Sometimes people who have no understanding feel like they need to say something "uplifting" and it ends up being more of a weight. I have people say things to me all the time that me go a little crazy (I have Crohn's disease). I can't imagine what that must do to you as a momma when they say similar things to/about Joe.
I think that you all make an amazing family!
Posted by: Jen | March 29, 2008 at 11:36 AM
I just discovered your awesome line of clothing yesterday. My sister called me, freaking out...I had to get get on line RIGHT THIS MINUTE. Okay, okay, I will. I DID. I love these clothes, I love your attitude, this company ROCKS. I can't wait to see them on Willow. (My five year old.) And I have a 10 month old son, so I am really excited about the boy's stuff. It is clear to me that you have plenty of inspiration...and critics...for your boy's line. SHINE ON! This is what keeps America Beauitful!
Posted by: Tatum | March 29, 2008 at 09:23 AM
"Kid's need one thing to shine at"..thank you for this. 2 of our 3 little people have 'issues' and sometimes its hard to explain to grandparents/cousins/friends that my 9yr old wants to knit and sew and be good at it..and be a boy..is more than ok. He's shining. Thank you for reminding me.
Posted by: bigbucketgirl | March 29, 2008 at 08:46 AM
What a beautiful post! What an amazing little guy with an amazing momma. Thanks for sharing.
Posted by: Kayla | March 28, 2008 at 11:20 PM
Sometimes we read things that just stick...literally with us for the rest of our lives. This post was so beautiful and "Kid's need one thing to shine at" was it. Thank you Denise for sharing. Your kids are awesome!
Posted by: cristy | March 28, 2008 at 06:50 PM
I agree with Kay. It's so wonderful to hear you tell this story because we can all relate in one way or another. Every mother only wants the best for their children and it sounds like you are giving all of yourself to your boys.
-Kim
Ps. I love you are the mom who has their boys have faux hocks!!!! in a few years all the girls are going to be calling your house to talk to them and get your cute clothes.
Posted by: Kim | March 28, 2008 at 05:49 PM
I agree with Kay. It's so wonderful to hear you tell this story because we can all relate in one way or another. Every mother only wants the best for their children and it sounds like you are giving all of yourself to your boys.
-Kim
Ps. I love you are the mom who has their boys have faux hocks!!!! in a few years all the girls are going to be calling your house to talk to them and get your cute clothes.
Posted by: Kim | March 28, 2008 at 05:43 PM
OMG!!!! Where did you come from, girl???? Could the rest of us feel any more inadequate??? Who knew that you all have been through so much. I am so proud of him and hope that he heals up well. What a little champ he is. Gorgeous to boot!!!!!
Big HUGS to your beautiful family and the biggest to the little inspiration of the day.
Posted by: jami | March 27, 2008 at 11:39 PM
He is so completely beautiful inside and out! My daughter was one of those babies with a huge "ugly" birthmark on her face and I was very quickly thrown into that world and what wasn't "pretty" was not my daughter but rather people's reactions... I actually published an essay about it in Mothering. Here is the link if anyone is interested:
http://www.mothering.com/articles/body_soul/inspiration/lessons-learned.html
Her being born the way she was was without a doubt the most wonderful thing that ever happenned to me and I'm so grateful for the lessons I learned from the whole experience. It really does make you a better person and makes them the most amazing little beings!
Thank you for sharing your story.
Pascale
Posted by: Pascale | March 27, 2008 at 11:38 PM
beautiful....just beautiful. =)
Posted by: ~lovelyn | March 27, 2008 at 09:14 PM
Thank you for this!
Posted by: Kerrie | March 27, 2008 at 12:16 PM
If I did'nt have reason enough to think that you are an incredible woman, you just gave me one more. Thank you so much for sharing what was in your heart. I don't even know you but my heart swelled like a proud mama hearing about how brave Joe was at the dentist. I always try to teach my children to look past someones diffrences and see just the person. It is a lesson that adults often need too. Whe recently went through a difficult time and I can not tell you how many times we were told that it could be worse. A friend of mine was just diagnosed with colon cancer, she is a SAHM of a 4 year old, 2 year old and 4 month old, so yes, they could be alot worse, but they could be so much better for alot of us too. I don't think people realize how NOT comforting that phrase is. Sorry for the long post, I tend to talk too much:) Keep enjoying that beatiful family!
Posted by: Brandie Pahl | March 27, 2008 at 11:06 AM
what an amazing post-
what an amazing son and mom!
xoxo
Julie
Posted by: Julie | March 27, 2008 at 10:13 AM
Joe is an absolute darling!! What a blessing he is to you and to us all. And thank you, my dear, for sharing with us. Isabella loves his pictures too, she told Carlos that Joe is her friend (with a twinkle in her eye). Here's to perspective...
Take care.
Posted by: Rhonda | March 27, 2008 at 09:26 AM
Well that made me cry. And I was totally impressed that he was brave at the dentist. I had no idea that he's worked so hard to overcome other challenges.
Posted by: Kristi Tolman | March 27, 2008 at 08:22 AM
that was so sweet and very heart felt! My heart could feel the entire post! Joe is an absolute cutie and so is Gabe, you guys are so lucky!
Posted by: shannon | March 27, 2008 at 03:34 AM
Ahh...you are so right that you have a very brave (and just too adorable) little guy. Many thanks for reminding me how much can be learned from our kids...I have a feeling that on most days I should be the one doing the growing and learning--what a wonderful grounding thought :)....
Posted by: shannon | March 27, 2008 at 12:17 AM
Sweet Sweet Joe! I can't wait to meet him one day! It's funny how we can pull so much inspiration from the littlest people we know! He is beautiful just like his momma and daddy and he is such a wonderful role model for his little bro...actually for us all! Those eyes just melt my heart!!!
Posted by: Michelle Huesgen | March 26, 2008 at 11:39 PM
Thanks for sharing and being so transparent, I love that thought of giving a kid something that that shine at...so true. You know we feel like we know you because you are so real here but it's moments like this that I am reminded that we are all so much deeper with more to our stories than most know.
You're an amazing woman for so many reasons Denise. Joe is amazing too and we know where he gets it. I have to say I LOVE that first picture, his hair ROCKS!
Posted by: Kay Snyder | March 26, 2008 at 11:22 PM
What an amazing and handsome little guy! He is just too adorable for words! Thank you for sharing his story! I LOVE the photographs as well!
Posted by: Tiffany | March 26, 2008 at 10:54 PM
You are truly a beautiful person, with a beautiful family. Thanks for sharing some 'inside' with us.
And yes, you have a VERY brave and strong little boy! HUGS!!!!!!
Posted by: Denee K. | March 26, 2008 at 10:12 PM