Best.Gift. Ever.

 

 

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I have barely put my car in park when I hear Zoe's ardent plea from the backseat. " Mom, can I walk at this store?" It is our last stop and I try to recall how shaky Zoe's legs were when I last helped her back into the car. A quick glance at her face and what I see reassures me. Her eyes are bright, her face slightly flushed, but she is smiling too. All signs that she isn't too tired yet. At this store, we are just picking up something right inside the door, so it is easy to just say yes.

As I help Zoe out of the car, she looks up to me and grinning asks, "Mom, you know what would be the best gift ever?" This is a game we have been playing lately, the girls and I naming both real and imagined items as a best.gift.ever. "What?" I ask pausing, as I picture Zoe's painstakingly prepared Santa list sprinkled with favorites like Barbies and nerf guns.

"Not needing my wheelchair," Zoe replies. "That would be the best gift ever." She is smiling still, this happy kid of mine and in this moment I can't tell if she is content with the understanding that this is a dream gift, as unattainable as the Hoverboard she imagined placing at the base of her power chair, or if she is hopeful and excited, believing that maybe one day this gift could be real.

Zoe has always been my Christmas kid. In our home, we celebrate with simple holiday traditions during a season that seems to bring sickness too. We embrace the Christmas jammies, collect seasonal blankets, and stuffed animals and have amassed an impressive collection of holiday DVDs. The season starts with the arrival of our Frasier Fir Christmas tree fresh cut from North Carolina, and we bake sugar cookies through December as the excitement builds for Santa's visit to our home on Christmas Eve.

And then last year Zoe started middle school, and because my kid is so social, I told my husband it was time, we had to have the talk. We whispered and worried, my husband and I, unsure how Zoe would take the news that Santa isn't real. That all of these traditions she loves are based on this one untruth. I couldn't risk the fact that Zoe might be outed and laughed at if we didn't tell her. And so we sat down to talk, and in the end, her face full of emotion Zoe looked to her father and I, stunning us by asking, "You did all of this for me?"

Through the years, Zoe continues to teach me to count our blessings with each new item she adds to her Christmas list. A Fisher Price basketball hoop. She has grown stronger and can balance with her walker. A Barbie dream house. Her mind is now full with imaginative skills and she loves pretend play. A deluxe collection of Sharpie pens. The strokes of her pen are steadier now and her grasp stronger, she is delighted with drawing. The pink Rebel Nerf gun. She fills the satchel on the back of her walker with nerf bullets and moves through the house with ease on sneak attacks. Lego Friends Beach house. With her brain and her hands in sync, a flashlight to assist her affected vision and a lego base to stabilize her projects, she is able to spend hours building. My blessings grow with each new Christmas list.

I hold out my hand to Zoe and help her step out of the car. Still smiling, she is waiting for my response. Her eyes meet mine and I can't quite tell if it is hope or mischief I see. Still, I guide her forward, adapting my own strong stride to match her smaller, slower steps. I consider the miracles this season brings and I realize that maybe I do believe. Maybe it is hope, maybe it is Zoe's joy, but for now, we can both believe that it can be real. With Zoe's hand tightly held in mine, I sigh.  " Yes, Zoe," I say, "that would be the best gift ever." 


What Every Mother Wants For Her Child.. Simple, Social, Fun.

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A Mom friend of mine put it ALL out there the other day, when she declared her intent to get her daughter the ONE thing she really wanted. And it wasn't a toy, a fancy trip, or even the desire to " be like everybody else" ( something my daughter frequently wishes for). Her daughter really wants to have a sleepover.( I am hoping my daughter gets to be the lucky host!

When my older daughter (  Zoe's BFF since they were babies)  approached her teen years, it was a big adjustment for Zoe.  I thought Zoe and I had already discussed all of the most heartbreaking topics possible, like how long she would need her wheelchair and walker, and why she was different than other kids her age, and how come people sometimes stared. Until we began the constant, ongoing discussion of why Olivia no longer wanted to to play with Zoe, had no interest in Barbies anymore and could not even be bribed into floor time, pretend play with her sister. It was all Zoe really wanted, and it took a lot tears and time for that to finally pass. Eventually we adjusted, and we got creative. We crafted, play games, went crazy with Rainbow Loom and made Saturday family movie night- but still things just weren't the same for Zoe, she missed creating and imaginative play with her big sister.

With Zoe now in middle school , I began searching for something new that was fun and also more socially appropriate for Zoe to share with her peers, and I was thrilled to discover Lego Friends. 

Perfect for a girlie girl like Zoe, I tested the waters close to Christmas with the Friends Lego Advent   Calendar. I waited for a sleepy Saturday morning, when Zoe and my teen were pretty chill and pulled it out . We opened the box and the both girls grabbed a few of the bags for the first week of December that had already passed and Zoe began assisting her big sister with building. And then, caught up in a lego building frenzy, they spent another two hours laughing and building and eventually asking me if they could  finish the whole box. 

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At Christmas, Zoe and her dad put together a car , while Olivia had fun assembling a large Lego Friends house for Zoe, who spent hours in imaginative play with her Friends village situated on her bedroom floor. Zoe's birthday is the end of May , and it is no surprise her list has several " L" words on it. Her independent reading time has included the Lego Friends Easy Readers and Chapter Books and together, Zoe and I have finished the Lego Friends App Game for the iPad twice. 

Recently Zoe began building Lego's completely independently, beginning with the Classic Creative Bricks instructions, and then showing off her work on Instagram. 

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The  Lego Classic Creative Kit is a lot of fun for her and she can build them quickly, as the directions are easy to follow along. Legos have been great for boosting her confidence, increasing her problem solving skills, and of course - the cognitive and fine motor benefits are huge. 

And like a Mom, I do some creative engineering myself.

When I think too much time has passed since the girls have had relaxing fun time together, for a special treat I pull out a new Lego box. Olivia enjoys the building process all the time declaring that she is just helping her sister out- but it is the joy on Zoe's face that fills me. The way she lights up with  the understanding that at least for a little while, she's got her old playmate back again.

Please know this is NOT a sponsored post. I think the LEGO brand does an awesome job making their products, and providing lots of free inspirations ; for new projects ( check out their website) , books, videos and apps all readily available through major retailers. We have invested in LEGO products because I feel they are worthwhile, fun and have great learning and therapeutic benefits, not to mention of a mess of memory making moments. 

 


Toss Your Checklist For Good Mothering..Trying Your Best Is Enough

I start and end each day thinking about my kids, my mothering,  and I always question if I am getting it right?  Like most other families, we have our normal moments of fun and games and everyday silliness, but we have the other moments too- when kids are tired, and stressed and there are tears. Times when we have to talk about medicine and doctors and how we are feeling, and then decide how to best handle it. 

We shouldn't second guess ourselves, but we do. We should do more of celebrating the small moments.

In our house, we get up each day and just try our best. Something I have always taught Zoe, my youngest daughter, affected by mitochondrial disease and her big sister, O - now in high school. We may not feel good at first, or we may not achieve what we hoped to achieve that day, so we try our best and we adapt and adjust.

I don't know why I never considered this philosophy for my own mothering, the idea that just trying my best is good enough. 

Yesterday was my birthday, and for the first time since her early childhood, Zoe's big sister, wrote me a letter via my blog, below.  I want to share with other Mom's of special needs kids too,  because it was written from the perspective of the older teen sibling. I want you to read her words and know that all those small moments? They add up. And that sometimes, just doing your best IS really good enough. 

 

HAPPY BIRTHDAY MOM ( Originally posted by O for my birthday) 

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This is not Suzanne. This is her daughter O (don’t worry she knows I’m posting this). It’s my mom’s birthday, so this is a mother appreciation post (half revenge for the times you've hacked my Instagram/Snapchat). Funny story, my mom actually forgot how old she is turning, so she had to do the math. My mom is the best mom, in my opinion, but I’m biased. My mom has done so much for me. Ten months ago, I started high school and I came home the first day and cried about how hard everything was. She told me I’d get better and everything would be okay. She was right, like she always is. Now, those hard classes aren’t too bad. High school isn't the only thing she's helped me through. She helps me through everything, and I love her to the moon and back.

            This is actually part one of my birthday present. I think I'm going make a coupon book for hugs and laundry folding. In addition to cooking and mothering, my mother is great at spoiling shows for me. I’m sure some of you have read her “How I Can Connect to Kristina from Parenthood,” article. Well I'm on season 2 of Parenthood and she sent that article to me. Spoiler alerts were not given to me before I read it. Thanks, Mom.

             My mom does do a lot for me. She recently chaperoned my show choir trip to Anaheim. She sat through lots of sing alongs, Hairspray, complaining, and laughter just to make sure I felt well the entire time and to watch me do something I love. We also went to the happiest place on earth for the first time. She says she didn't like it, but I know she secretly did. I'm so glad she was there the entire time, especially because I was so proud to be on that stage and I could tell she was too.

On her birthday today I would like to make the point that my mom is my favorite person in the world. I'm so glad and thankful that she is my mom and I couldn't imagine a world any different.. And Mom, I love you. I hope you enjoy your special day. I love you, Zoe loves you, and Dad loves you, too.

Xoxo,

O


When Winning The Lottery And Being Lucky Means Being Able To Care For Your Special Needs Child

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When Marie Holmes, one of the three recent Powerball winners sharing the $564 million dollar jackpot officially claimed her prize, she said the best thing about winning is being able to provide for her children. Holmes is a single mom with four kids and was living in a trailer. And most parents hearing her story will believe the stereotype that when she said “provide for” she meant food, housing and a secure future for her children, all under the age of 7.

Holmes has one child with cerebral palsy, which suddenly makes her not so different from me. I know what Marie Holmes meant about wanting to provide for her children. I am the mother of a special needs child, and I know the hurt of wanting to provide for your child, and also the advantage of being lucky enough to do so.

 The hurt means spending your nights clutching your sobbing toddler tight against your chest, not knowing what is wrong, when all you can offer is the comfort of your touch, then quietly wipe your tears away. 

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