Last week I had the pleasure of reading to my daughter Lizzy’s class, a group of “typical” school children. I say typical because Lizzy splits her day between two classrooms. Part of the day is in Mrs. O’s second grade, and the remainder is in a small group of five other children with special needs.
I appreciate it any time I take part in one of my children’s school events. These are the days I dreamt of before I had children and are the wonderful, little things that make parenting so much fun. This time, I did the reading because it was my daughter’s turn as student of the week.
I sat in the “Special Person” chair and waited for Lizzy to arrive. In front of me sat the 21 children in her “big” class.
These are children who are present enough in the world to know how to say what they want to say. They have one classroom and one teacher. To my knowledge, none of them need medication so that they can get through a school day without an outburst or meltdown.
The moment my daughter walked in the classroom accompanied by her teacher’s aide, I was struck by how pretty she looked in her American Girl cardigan and pink skorts. My heart swelled as she recognized me, smiled, and said, “Mommy.”
She sat down and tried to make her very long legs fit in the tight space with all the other children on the story carpet. She is at least a foot taller than the other children. Because of her developmental delays, she’s been held back and is at least a year older than them. In addition, her endocrine system doesn’t work properly, and that has caused her to grow faster than other kids.
Mrs. O hands me Lizzy’s FM unit, which amplifies my voice so my daughter hears me directly in her own ears. All other noise is blocked out. It helps in big groups when many people are talking at once.
I whisper, “l love you,” and she smiles. We’ve been playing the same game with the unit since she started wearing it six years ago.
Back then, we hoped that this would finally be the answer. Eighteen months before that, we had hoped inserting tubes in her ears would be our solution. We also invested a lot of faith in the speech therapy she soon started. Then there was what seemed like an endless series of specialists, therapies, schools, and tests all in search of the explanation for our daughter’s disability and her shot at a normal life.
Each time, we’d find a new piece of the puzzle but nothing close to a definitive answer.
I start reading Madeline, which was my favorite book when I was growing up and the book I have been reading to Lizzy since she was a baby. I was waiting for her to answer her cue when I read, “To the Tiger in the zoo, Madeline just says…”
But it is harder for my daughter to enjoy a story when there are 20 other kids giggling.
I can tell she isn’t quite with us. She’s in a safer place somewhere in her own head where life is manageable. If we were alone laying in her pink canopy bed, I would ask her where she was and would laugh with her reply, “I’m in Fairy land, I’m in the jungle, or I’m on the cookie princess pink planet.”
She’s a magical child with a wonderful imagination. But she can only connect to the rest of the world in small doses.
I finish my story and the teacher asks Lizzy if this is her favorite book. “Yes,” she replies and gives a smile.
I said my goodbyes to the children and Lizzy’s teacher. I’m happy that Lizzy has a chance to interact with kids who are developing typically and grateful that my daughter is in such a welcoming environment.
I walk out with Lizzy and her aide. They’re going back to her small group where she will work on the computer. She loves that. She gives me a big hug and a kiss, and I head back to my minivan.
I smiled and thought how this was the first time in all the years that I have visited Lizzy in a typical setting with typical children that I didn’t cry or even feel the need to cry. That’s a big change.
Acceptance has taken a long time, and I’m not even certain I have achieved it fully. Part of the problem is that Lizzy doesn’t have a formal diagnosis.
There are no ribbons for us to wear, no bumper stickers to put on our car, no cause for us to get involved with, or other parents who have the same issues.
We are in a special club, but it’s far bigger than most people would think. It’s filled with families who have children with a host of medical and developmental issues. Some are life threatening, and yet no name has been put on them.
This year I’ve reached a level of peace. It’s probably because Lizzy is happy and doing well. Getting through the school day isn’t the challenge it once was. Finding a doctor that realized a lot of her behavioral symptoms fit a bipolar diagnosis and treated her accordingly helped tremendously.
The medications she takes have been life changing for Lizzy and the family. In the past year, we moved from a crisis to a settled period.
I would be lying if I didn’t say that sometimes I wish it were different. I would be lying if I said I didn’t wish Lizzy could have the life I had dreamt for her when I was pregnant with her 10 years ago.
But I’m happy knowing that the child I have is developing in a way where she seems happy. To wish for anything else would be to wish for someone other than Lizzy.
I can’t do that. My daughter is a special person with her own approach to the world that makes her happy. I was searching for my happy ending that included a miracle cure. The cure hasn’t materialized, and the doctors have told us it won’t.
But I’ve come to realize that each day my daughter is happy, she’s writing her own sort of happy ending. Each day, I learn a little more about accepting it.
OMGoodness, I was right there with you in first grade with my own daughter (now 10yrs. old) and can completely relate! Aside from ADHD, she was not given any specific diagnosis until last year either. The attention issues could not have been the answer to all the problems. Although my daughter has ALWAYS had a propensity for words, there was a huge disconnect to emotion and relating to others. That was just the tip of the iceberg. She began treatment with a mood stabilizer, based on the results of the Child and Adolescent Bipolar Checklist and an extensive review of her history with us. She made initial progress about a year ago, then took down turn this fall, so we are working with our Doctor to find the best balance for her again now. We are participating in a clinical trial. Tomorrow morning there is an update you can read about on my blog: http://www.lifestwistedstitches.com/search/label/clinical%20trial
I can’t imagine how hard this is for you. Thank you for sharing your life online. I am happy for you that Lizzy is happy.
Kathy, this is such a beautiful and inspiring post. Lizzy is blessed to have you as a mom, just as you are blessed to have a daughter as special as her. Thank you for sharing your life and lessons with us 🙂
Kathy,
Your post is beautiful. Lizzy is blessed. My son was undiagnosed until fourth grade — and even then, we only got part of the answer — it took a very patient clinician to figure him out. But it helped. A lot! I am still praying for peace — my heart breaks when his heart gets broken.
God bless,
Karen Dawkins
I love you sweet cousin, you are an inspiration.
Hello sweet Kathy, sorry to leave this message here but I do not have an email contact for you. You recently entered my 1500 followers giveaway. Thank you again for being one of the 1500! Unfortunately, when the final transfer was made to the new location your entry did not transfer.
But, all is well. I DO HAVE YOUR ENTRY recorded already. So nothing you have done has been undone.
I’m so sorry that your entry does not show up on the new location giveaway page.
As an apology I have added one more entry to your previous entry to extend my apologies for this inconvenience.
Remember you can tweet about the giveaway daily.
Good luck and thank you for being an important part of Katherines Corner.
Big hugs and wishes for a fabulous week ahead!
The “I love you game” makes me smile. Great post<3
Thank you all so much for the wonderful comments! The support means so much to me, I’ve been wanting to write about our journey as a family for some time. It saddens, yet comforts me to know that there are other families that are going through similar experinces.
I didn’t even know I entered a give-away, who knew!!!
Thanks again everyone, much love to you all.
You are so stong. An inspirational post!
While I only have a 6month old I can relate to the fear or the worry of acceptance etc. I remember laying there with him in my tummy just wondering what life would be like for him and crying out of fear that he have to face any challenges or issues. I do not know what the future holds but I do know its mothers like you who remind and teach me that I can do anything and that I will do anything for him!
Aww this is such a sweet post! Hope the I love you game continues to get played 🙂 lovely.
Kathy,
This is a fantastically moving post. I especially liked these lines: “There are no ribbons for us to wear, no bumper stickers to put on our car, no cause for us to get involved with, or other parents who have the same issues.” There are a number of people in my family who deal with developmental delays and special needs. Some can identify and they fight for those causes with a passion. Another family member has not been diagnosed, but they have come to adore the special olympics. I absolutely get what you are saying. I hope you know you are a great advocate for Lizzy, and now for the families who are like you. Your post is your bumper sticker, your pin and your banner. Keep writing!
I really can’t tell you how much all of your comments mean to me. Thank you. It is amzing what strength you find when it is one of your children.
Meagan, thank you for your moving comments. I do hope that all we have been through can help other families. I smiled when I read that one of your family members loves the special olympics because this is the first year Lizzy is doing it! She has had so much fun training and the big event is this Sunday! It was the first year we knew she could particpate. The medicine has really been a lifesaver! Thank you again.
Love to all
Kathy
This is a beautiful post. I’m so glad you were able to share that moment with your daughter. Sounds like you’re lucky to have each other!
This left me so moved, Kathy. On a day full of way too much stress and hustle and bustle, I sat down to read it and am so glad I did. Such a perspective, such love… you are truly THE mom for Lizzy. I want to write so much more… know that my heart is bubbling over with things to say at a rate that my brain and hands are completely at a loss 🙂
Simply lovely post.
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Hi Kathy~Thank you for sharing with us. I just started blogging recently & this is the reason why…because I feel a pull to get to know better & understand more people in my world who I, otherwise, would never get to know. Many people I have known for many years have not shared the real emotions of their lives like you have just shared with us in your blog. It is tremendous. We are here to support you. We care about you and your precious little Lizzy. God Bless~~
Stephanie at Texskiss
http://www.texkiss.blogspot.com
What a lovely moment 🙂
As always Kathy, this was beautifully written. The love you have for your children oozes out of every word you write. You help keep me grounded and remind me to cherish every little moment in life.
Kathy this was a beautiful post. And even the comments were wonderful. Thank you for sharing your story. And like another commenter said- that line about the bumper sticker was very poignant, and will be running through my head for awhile.
How inspiring this is Kathy, and so very well crafted. Thank you for sharing so much of yourself. The thing I’ve noticed about love is this: the deeper and greater the love, the more potential for suffering, but who would give up such a love just to avoid the pain? Not I…
ok you just made me cry! i know so much how you feel and acceptance is a hard journey to travel towards. like you i am not there yet, oh boy will we ever get there? your words were mine until we reached the lack of diagnosis. when we were told tilly had smith magenis syndrome we were not even asking questions, we had a 2 and half year old with a speech delay as far as we were concerened so it truly was like a bomb going off…i hated that diagnosis! but oh boy it has become a friend now, i never thought i would say that…i cannot imagine the world with the same struggles and no diagnosis. you are a wonderful mummy, it screams out of your words. i am following your blog to be a virtual hand to hold on this journey. jane xxxxx
I really love the way that you write and enjoy your blog thoroughly. So, I am handing you a Stylish Blogger Award!
Follow this link to get your award and please “accept” this award the way you should!
http://thoughtsfromthismom.blogspot.com/2011/04/i-am-feeling-extremely-lucky-past-few.html
Have a wonderful weekend
~Wendie
http://www.thoughtsfromthismom.blogspot.com
http://www.oddjobsmomma.blogspot.com
Hi Kathy, I know I have already commented on Momsters but I love your site here and I would like to congratulate you on the great following you have gotten here. Not surprised at all, after all I am your #1 fan. Thanks again for a very heart warming blog, can’t wait to read your next. Love ya, Jodi
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Thanks Jodi, you were my first follower on Momster and my first here! You will never know what your support has meant to me!
Thanks for all these great comments, it has been so wonderful to read them and know that we are far from alone, no matter what indvidual situations we may find ourselves in. Thanks again everyone. Much love to you all!
I don’t know whether to hug Lizzy first or you…virtually, that is. Kathy, I know you already know this but I’ll say it nevertheless…Special children like Lizzy (and I mean special in every single way imaginable) only deserve special parents like yourself. God bless you and your family. This entry is beautiful, quite magical even. I truly enjoyed it and I thank you for sharing your special life with us on here.
You and Lizzy are true heroes. How courageous you both are! She is special not because of her needs but because she is unique and she is yours.
On a side note, as teacher, I can assure you that there were probably several children in that class on medicine for a variety of reasons, but mostly for behavior;)
This is a beautiful love letter to your daughter. Thank you for sharing it. As a mom I constantly struggle with meeting my son where he is and not forcing my idea of how he should be on him. Your daughter is so lucky to have you for her mom and I have taken this post to heart.
It is obvious through your writing that your daughter has a happy, beautiful soul – and that you are a genuine, loving, patient mama. No family can ask for more than that.
Great post, and well-done blog. I stopped by from MBC and I’m glad I did.