Monday, February 10, 2014

Square Pegs, Round Holes and the Infinite Possibilities of Loving Your Child

I had breakfast with my friend Andrea last Friday morning after an exhausting week of making decisions. Not all of them were critical, but there were enough of them stacked together for an already indecisive person like me to nearly crumble at the end of the week when my Starbucks barista asked me if I wanted whole, 2% or skim milk. I don’t know, okay? I don’t have the energy to contemplate the pros and cons of milk fat right now, so please, for the love of God, pour something hot into a cup and hand it to me. But I didn’t say that, of course. I smiled, said “2%” and complimented the barista on her adorable haircut because I overcompensate.

I sat with my friend as we talked about light-hearted things that quickly transformed to heavy-hearted things. Heavy-hearted things for us usually sounds something like: Our kids. We love them. We worry. How do we do this? This is hard. And last week was hard—a week I dedicated to worrying about Nella. I’m realizing we are getting there, that place we knew would eventually come when “Aw, what a cute little baby” shifts into “Fly, little bird, fly.” We’re feeling more the communication delays which transfer to challenges with expectations at home and following directions; and some new experiences (like moving her up an age group in ballet) bring those challenges to the surface. With preschool on the horizon and my girl at the edge of the nest, it snowballed together to feel like a looming cloud.

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It all came out at the table last week—my worries about her future challenges, preparing for school, thinking about middle school and high school, feeling the weight of all that still needs to be done in the world of awareness and acceptance. “We have to think about this stuff, Brett. We have to prepare for her future. We have to talk about these choices.” Like always, Brett says, “We don’t have to decide everything right this second, babe.” Because my worry quickly translates to urgency, and someone needs to reel me in. He's good at that.

I like to think of these worry periods as pit stops. I’m getting gas and new wheels, and while that’s happening, I unload. It’s amazing how quickly you refuel and hit the gas again when you realize your kid’s out there on the track.

For us, it’s difficult defining what behaviors of Nella’s are attributed to Down syndrome and what’s just manifestations of her own personality and growing pains. How much do we push her and how much do we let her be who she is? How do we balance high expectations with accommodations? As we made some decisions for her last week and talked about how to continue to nurture her toward more independence, I felt the frustration and the sadness that comes with this additional stuff. More roadblocks, more work, more thinking outside the box, more taming emotions because the sad demons love to use these decisions as an opportunity to lurk and make you feel bad. Deciding what’s best for Nella right now is challenging us. “It’s like putting a square peg in a round hole,” I told Brett.

But then, (Don’t you love “but thens”?!) I remembered Apollo 13. Have you seen it? The astronauts’ lives literally depended on fitting a square peg in a round hole. Technically speaking, the lunar module’s round receptacles didn’t fit the command module’s square filters for carbon dioxide disposal, and CO2 levels were near toxic. There’s this scene where these NASA engineers go into a room, dump everything to which the astronauts have access on the table, and are given the challenge of using what’s on the table to transform the round receptacle to fit the square filter. It’s an impossible task, but these people are solution-based thinkers and their friends' lives are at stake. And they figured it out. They walked out victoriously an hour later carrying a contraption that was once a non-existent solution. They used duct tape and cardboard and creativity and determination and never once said “we can’t do this.” They did it because they had to.

Being sad and venting is important in acknowledging our feelings, but it’s a very unproductive place for me to stay. I want to focus on solution-based thinking—transforming round holes to square ones when we can. Using resources to change the outcome. Looking around and ripping things off walls, if necessary, to build what we need. We’ll do it because we have to. Because we love our kids, and when you love your kid, there’s no square peg you won’t take on.

And as if fitting a square peg into a round hole wasn’t problem enough, you know what else happened on Apollo 13? They had to conserve power on the shuttle to get it home, so they cut all their resources down. No cabin heaters, no instrument display, no guidance computer, no ground control. No map of where to go and no one to tell them how to do it. Sound familiar? It’s called parenting.

But they still did it. In radio silence, they navigated that spaceship home by manually locking their focus on where they wanted to go while the universe seemed to spin out of control around them. And that’s exactly how I deal with worrying about my kids’ future. Where do we want to go? Lock focus. Go ahead, universe--spin, spin.  

I ended my week at the Valentine’s Day dance Saturday evening, a welcoming place for all that I was feeling. That gym became my sanctuary and its people, my church.

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I took all my angst from the week and channeled it into dancing and clapping and allowing myself to feel everything.  It's very easy to feel everything when you walk in the door to the Valentine's dance.

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There’s a small group of tables on the side of the gym where most of the parents sit, and I watched these moms and dads the other night as they made small talk and occasionally stepped out to the dance floor to join the crowd. They’re the Square Peg Veterans. I thought about how many hard decisions they’ve made, how many worries they’ve combatted, how many once non-existent solutions they’ve invented. And talk about radio silence—these people did it without the Internet for years. And they’re here. Smiling. Happy. Shaking a leg to Billy Jean.

We're taking one decision at a time.
As powerful as that universe spinning out of control around us seems to be sometimes, it can never compete with the greater power of loving your child.

Lock that focus, and you will always, always make it home.

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67 comments:

Lulu said...

I go through the same thing sometimes, trying not to read into everything because I know that some of her behaviors are because she's a 4 year old and others are because she's autistic and only time will tell for sure.

Chasing Hazel said...

I was smiling a nodding along the whole time I read. I too worry about so much the future holds for our girl, Hazel. Grabbing a cup of coffee and reminding myself to stay present is my current coping strategy. There are days I can't tell my excitement from my fear. But I do know that I am ALWAYS proud! Love reading your thoughts thanks for sharing!

Jen said...
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Jen said...

I had the opportunity to speak today to a group of soon-to-be teachers at a local college... Giving them my parental perspective on raising a child with special needs. It sometimes feels so good to just talk things out... Get fresh perspectives. As I told them some of the stories about my Meg, they actually suggested trying something new with her that I had not thought of. I love getting our story out there... And sometimes when I feel out of place (like a square peg for a round hole), it helps me so much to just talk. Get some new perspective, and feel the support of others. I have no doubt that your game plan from here will help Nella see much progress... But I feel your feelings from this post. As a fellow SN parent, I have felt all these conflicting emotions before. Thanks for keeping it positive and sharing your struggles, too.

Baba said...

Another one here who knows these feelings!

We are getting ready to start our 4 year old into school later this year, he has sn (autism) and it is such a balance between trying to push him and give him the opportunity to achieve his potential, yet still respecting and supporting him with his limitations.

I do find for me, I have to just focus on the present. The future is such an unknown that it's hard to speculate where they will be or what progress they will have made (or not)

It's definitely hard as they grow up, and the gap between your child and their peers is ever widening and noticable (communication is the main thing here too) but I have no doubt that Nella, and my Mr T will reach their full potential. I have not seen Apollo 13!! But its amazing what can be done when there is no option of just giving up

anna
(intheplayroom)

Nicolette Gawthrop said...

Lady- Always bringing it home.

So much love to you.
XO

courtneyc said...

Kelle, I noticed you've posted pictures of people from the Valentine's day dance onto both your blog an instagram-- are they aware youre using their image on these 2 very public forums? People should have an expectation of privacy. Maybe you already did this, but if there's an email list to the attendees of these events, you could email them with possible blog photos and forms of consent before publishing their faces for the whole world to see. They're beautiful pictures, but you just never know.

Shannon Green said...

Kelle,

I have been reading your blog since my daughter was born, she was born a few months after Nella, she'll be four in March. I think, as I usually do, that you brilliantly handle life. And these new challenges you're facing will be no different. One thing I'd like to offer that I've stumbled through knowing is that often we give away our internal sense of peace. We allow it to become determined by the chaos we occasionally live in and then are surprised or disheartened by its absence. You seem to exude peace consistently through your writing, I just wanted to remind you, don't give it away. :-) best wishes, you'll get there

Jolene said...

How I identify with this post! My Lina (who, like your Nella, has blonde, blonde hair and an extra chromosome) is 16 months old, but already we face decisions we never expected. Already I struggle with finding the balance between worrying and preparing and facing sometimes difficult realities but also keeping my optimism, my solid belief in her bright future, my conviction that - as you said - we will do this because failure is not an option. I take such courage from reading your experiences as you navigate this road just a little ahead of us. Courage, mama, one step at a time! Thanks for all you do.

Reem from www.reemfaruqi.com said...

She will do great in life! I know it! I love the strawberry photo ~ so much hope in her eyes :)

Maggie Panasuk said...

Dear Kelle, I stumbled upon your blog about three years ago, back when Andy Grammer's Keep Your Head Up instantly played after arriving. I was only sixteen years old. Today, I turn nineteen and I write to you from my dorm room where pictures, inspiration, and books fill every inch of my roommate's and my little space. We are dreamers here, but I am a quiet one, some may say, "She's a little awkward." But I don't mind because I know I'm just in a different place than most. I'm working things out in my head, finding my faith, searching for my purpose, and trying to figure out what comes next. I have been a closet reader, one who never comments, because I thought, " Who am I to comment, I am not a mother yet, I don't even know anyone with Down syndrome." I comment tonight because you should know how you have opened my eyes and heart to the beauty of accepting and loving differences and individuality. I want you to know about the strange, or maybe it's God's will, compulsion I have to help, to experience, to love especially those with special needs. You once wrote, " We all have special needs." I want you to know I have your words taped to my desk, quoted in my essays, and nesting in my heart. I often type "college" into your search bar just so I can truly relate to a young girl like me, but I read every post. Sometimes I laugh, sometimes I cry, and every time you instill a sense of gratitude with your perspective and honesty. I study, spend Saturday afternoons hiking, wandering the aisles of Target and thrift stores, and ironing because I'm the girl who brought an ironing board to college. Your post tonight, allowed me to see that not matter how uncertain I am, as we all are, about tomorrow, about getting into nursing school, about our children, about doing what's best, about always, that we will "always make it home". Thank you for being a light to a young girl, who has always been a little different.

Tracey said...

AWWW! Its all good! Jillian is 9 and she is incredible! Don't focus on it all so much that time whizzes by as you will find as much as you want them to be independent and moving along in life, they are happy with who they are all along the way! You will wish you had the time you worried away back to enjoy every little thing! They are so much more like us than you think! Jillian has a bestie with DS just like her! They are delightful together, best advise I can give is to nurture a relationship with a friend just for her! You will see her in an even more typical light!!! Best investment I have EVER made!!!

Sam and Julie said...

Oh, Kellie. I so so needed this today. Thank you for putting words to my anxiety today. Thank you for reminding me that Im not alone. Thank you for comforting me with the words that 'you will accomplish this because you have to'. You are so right - nothing can compete with the power of loving our children. xo

Lynn Richards said...

I'm getting my drill bit out as well...we are on the other side of school and staring down High School Graduation. Have Mercy. I vacillate between storming doors down and locking myself in my bathroom.

And today? We did homework and swim team, snuggled and laughed. It was enough.

Hang in there, Kelle, and thanks for being real.
xo
lynn

Diana Doyle said...

Kelle, your post made me cry today. Brought back many, many memories of decisions that are out of our control and how unfair life is sometimes to be having to make them. Its frightening if you look too far ahead.

When Savannah was diagonsed I was told by a wonderful, wise Dr to "Focus on her living, not on her dying." It became my mantra.

You can also use this mantra however focus on what Nella CAN do instead of what she can't."

I also know I picked my battles on days when I felt down or was too exhausted to think too far ahead.

Sending you love. If nobodys told you lately, you're doing an amazing job!

Love Diana x

Yaelle said...

Love this post. Love the Apollo 13 analogy. But I'd end it slightly differently: I'd have the hyper focus on your love and the soul of your daughter, NOT THE BLEEPING ROUND HOLE OF SOME SCHOOL DISTRICT or external goal. I'd go more for a lock on The Journey being one of happiness, challenge (but within reason), and growth for Nella. Day by day, week by week, year by year. I'd just worry about preschool for now. The future will get here soon enough.

I have two special needs kids and one is already 22. It's all good. You are a fantastic mama. Don't worry about the future too much now; you can't even do it for neurotypical kids. Make your decisions based on your hyper focus on an enjoyable year for Nella and the family. You'll be fine.

Lori said...

It's going to be just fine, Kelle! I don't know you but I have faith that your sweet Nella is going to do just fine in this world. After all, she's got a loving family who are her greatest cheerleaders! IF you feel like it, check out Sarah Basile's blog "Angel Eyes Adoption"--Sarah and her husband have adopted 3 little beauties with that extra chromosome and Sara was a special ed teacher so perhaps she might be willing to offer some guidance or at the very least, a shoulder?
I also love Maggie's comment to you. She is another one that is going to go far in this life--her heart is in the right place! And I guess, because I have always been a "late bloomer" myself, I can identify with her in feeling different at times.

Love is all you need said...

True that mama. True that.

Kimberley said...

Thank you, Kelle. Your honest and vulnerable post here resonates with so much of me. I've been on a journey with my feelings about Ds and how much harder it makes life for my girl--and my boy although he may not know it. I also see and celebrate the goodness, the new eyes for celebration and other joy it had brought. But it's hard to reconcile it all. I love your blog. I love your book. And this made me love you more. Bless you. You're a square peg trail blazer. Peace and strength to you.

Kimberley said...

Thank you, Kelle. Your honest and vulnerable post here resonates with so much of me. I've been on a journey with my feelings about Ds and how much harder it makes life for my girl--and my boy although he may not know it. I also see and celebrate the goodness, the new eyes for celebration and other joy it had brought. But it's hard to reconcile it all. I love your blog. I love your book. And this made me love you more. Bless you. You're a square peg trail blazer. Peace and strength to you.

Selby said...

Thankyou- just what I needed to read today.

PruM said...

I was listening to a smidge of talkback radio whist barreling towards the school pick up today and really enjoyed hearing one particular communication from a mummy describing her dyslexic son as intellectually "different" rather than "disadvantaged". Whilst neither are my own words, and neither may be the current nomenclature used for such a person, it's certainly struck a chord with me today as I've mused over how my 5 year old daughter is settling into her second week of the school year (in New Zealand). And as I read your comments regarding Nella-isms vs DS characteristics it formed another wee corner in my mind. We don't always know as Mummies how/why/when/why not...our child does as they do, the list is endless. The goal is, as you say, is to LOVE LOVE LOVE our darlings as best we can, and appreciating the unknown quantities even if we don't know how or why is an equally ninja mummy move. Love it when little thoughts during the day form a little constellation in the grey matter xxx

Megan Landmeier said...

Sending love - and sent you an email.

Holly said...

I have been reading your blog for awhile. Actually, I went back to the begining and sank into your blog like a good book. Posts like these always bring a tear to my eye. Not because of sadness for nella. But the overwhelming love you have for your kids pours out. It encourages me to be a better person and teach my girls to be more excepting. My daughter has a lil girl with Down syndrome in her preschool class. She sweet and adorable. She struggles sometimes, but I've taught my girl to help when she sees the struggle. To look past the difference and see all the awesome. I've learned so much through you and this blog. And I hope that nella finds a friend like that when she gets to school.

Justine said...

Kelle, this post came at a perfect time when I find myself also facing many decisions with lots of worry and trying not to get ahead of myself too much... wondering what I should have done differently and how I can make the world a more accepting place for my son... and I thank you for reminding me that I don't have to do it all at once. It's so hard to climb out of this hole but knowing other parents have come before me and are right next to me facing the same challenges is some comfort. Thank you.

Jen said...

I have an almost 13 year old son who is Deaf and has some learning difficulties as well. I also have a 16 year old nephew who is Autistic.

The best advice I can give you is to take advantage of EVERY service offered for your daughter. That is what will lead to the brightest future possible. My Sammy started pre-k the day he turned 3. (he was already getting private OT, Speech and Auditory Verbal therapy - a fantastic 3 hour round trip drive every week! oi!). At first, I thought I was keeping him too busy, too structured, but the truth is that early intervention is absolute key to reaching full potential - and it's not work for them - it's FUN! I believe that with my whole heart and see my son and nephew reaching their potential. Sammy is a hardworking student, fantastic hip hop dancer, a strong soccer player. He has his teachers wrapped around his finger. My nephew's journey was similar and intense in the early years, and to see this child who did not speak AT ALL at age 4 doing his best at age 16 to make his dreams of being a stand up comedian come true? Priceless. Awesome, creative, confident young man. Some sadness and being overwhelmed at times is normal - I personally believe research, action, education, love, support, therapies out the wazoo are the best antidote to that.

Crystal Kupper said...

We're totally going through something similar at the moment. We are a military family recently stationed in Europe. And our oldest is the only American not only in his school but the only American kid possibly in the county! And school is so very different here, leading to some silly troubles -- a teacher who insists on the British pronunciation of "zebra" for instance. And my boys is struggling to make sense of it all, where once he reigned supreme in his class back home. It hurts, and it's hard. Thanks for writing this.

olivermonty said...

Another "I needed this today" so thank you!

Jessica said...

I am at work in a conference room with all men right now just fighting back the tears. These words are beautiful. So beautiful. And pulled at my parenting heartstrings. In fact I think I might need to step out for a minute to let some of these tears out.

"As powerful as that universe spinning out of control around us seems to be sometimes, it can never compete with the greater power of loving your child."

Yes!!!!!

Lorraine said...

Kelle, I have never left a comment before, although I've been reading your blog for a few years now. You make me smile every day. I just came across this story on our local news and thought you might enjoy it too. http://abclocal.go.com/wpvi/story?section=news%2Fsports&id=9426537

The world knows no limit and nor does Nella. I worked in special ed for 13yrs. I loved every minute of it and I learned 1 thing. Never say never because I've seen kids who were told never soar higher than anyone ever thought possible! I can see Nella SOARING!

Anne said...

Great post, thank you for letting us in to the struggles you face as parents.

Allison said...

With us, it's kids with cystic fibrosis; but yes, oh yes, you're on the right track. Love from afar!

Mrs. Fun said...

This is where you need to take it one decision at a time. If that means deciding if she should attend preschool for 3 days a week or five days a week come fall.....make that decision and then move onto the next decision. Being a parent is hard, it's different for everyone and figuring out what works best for you may not be what works best for your neighbor. This is when we learn to listen to our hearts and not compare ourselves to other parents or families. Sounds like you are on the right track, just a bit overwhelmed. One decision at a time.

hmv003 said...

I love this post. I'm a single mom and face challenges and decisions with raising my little girl alone. Your last line gave me so much comfort and reassurance. Thank you.

Melina said...

Dang Kelle, this one is so good!! Inspires me to think HARDER about the ted talk audition which is my current square peg round hole 'this is impossible' battle. Thank you for telling your honest story and allowing me to glean inspiration for my own.

I saw the Apollo movie when I was just a kid and I still remember that scene where the engineers came up with a solution, I remember they used a pack of playing cards somehow. Incredible!

xo
melina

Mary Hearing said...

Have you ever heard of the story, "Sisterhood of the Traveling Pants." It's a story about a group of girlfriends who share a pair of jeans. That one pair fits each girl even though they are all shapes and sizes. We are all part of the human race. Within that race, however, there are many different sub groups, each with its own unique place in the world. Nella fits into the world exactly where she should, just like Lainey and Dash. There is no fitting a "square peg into a round hole." She already fits just fine. The key is taking where she fits and developing her to the best of her ability. It's not about lowering your expectations or denying her any other type of life. It's about you learning to accept Nella's just the way she is for the gifts and talents she has now that will only continue to grow and flourish as she gets older. If you try and put her somewhere she does not want to be she won't fit because she doesn't want to. Try talking to those "Square Peg veterans." Although don't let them know you refer to them as such. You might learn something from them. I'm surprised you haven't yet done so. Each child is going to have his or her own issues, whether it's behavioral or educational. Down syndrome does not corner the market on that. Are there extra challenges, you bet, as with any special needs child. But the answers are out there. Get off the internet and talk to people. Don't call your daughter a square peg. She is a human. An important part of the world already.

6512 and growing said...

Hugs, that's all.

The Holt's said...

I needed to read this today. Izzy is almost 3 which means she will be aging out of Early Steps. We have some big decisions to make soon. Plus Sister is getting her own independent personality.

Tara Michiels said...
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Johnstone Family said...

Your words are very inspiring. I don't know what it's like to have a special needs child and I cannot begin to even imagine the struggles and decisions you have to go through but please know that your words are inspiring to anyone willing to read them and breathe them in.

I'm currently pregnant with my second and I am struggling with depression as we speak. I went through PPD after my son was born almost 3 years ago. It was a rollercoaster ride that I never wanted to go through again, but here I am. And it has begun sooner this time around. Your words are so encouraging and remind me that life is and will always be full of surprises that are out of our control. All I need to do is focus on my son right now to remind myself that it all works out in the end. He is my saving grace. And when it's time to finally meet our newest little angel he/she too will be my light at the end of the tunnel.

CWestlake said...

Thank you Kelle, for this beautiful post. It is just what I needed to read today… a day that has been a hard day. Just one of those days…and as I read your post, all of the emotions, frustrations and stress I have been battling today came rising to the top and spilled over in the form of tears. I feel better now :)

Cathy Lohr said...

I just want you to know that when the time come there are teachers out there who love and care about their students. Most of us work hard to make sure they learn everything possible to be as independent and productive members of society as possible.
I'm a special needs teacher who works with some very special young men and women and I love working with parents who are involved with their child's education. I would much rather hear from a parent every single day than not at all. The majority of us get into this field because we want to make a difference and we love the kids not because we want a pay check or because we want summers off. I hope knowing this helps you feel at least little better about school. :)

Andrea said...

Awesome, just awesome, needed this encouragement today.

Raelyn said...

Kelle....
You know what? Grampa told Mom something the other day. He never was a worrier until she--his healthy "normal" firstborn--entered this world. See? Parenthood brings anxiety with any child. Although I completely understand that having a Beautifully Unique kid with Down's syndrome? Those anxieties seem greater somehow. I get it. ;)
"I like to think of these worry periods as pit stops. I’m getting gas and new wheels, and while that’s happening, I unload.". That is how I feel whenever I experience minor mood swings. They are "pit stops". Also known as "growing pains". I like that!! ;-D
--Raelyn

the solomon family said...

very sweet post!!!!

Aimee said...

I feel so sad that you worry so. She will be what she will be, and do what she will do. Just as all our kids will. We simply support them in being themselves.

Miggy said...

You nailed it. Again.

I'm a gold medal worrier. I project, imagine, and analyze myself into dark holes...yet with my little Lamp I quickly learned not to take it in all at once. I mean I still have my days where scenarios play out in my head, but I've had to learn (am still learning) to take it one day at a time. There are so many basic things that I don't have a clue as to how she'll figure out how to do... but I think I'm letting love fill in those worry fear gaps. Love is a much better and more productive way to spend my time than worrying. Kids teach us stuff I guess.

Stef said...

Kelle, thank you for this post. I think we all have tears and fears and every other word from the "anxiety" family and this post hit so many of mine on the head.
Thank you. I'm sitting here with tears, remember God's got me covered. My kids need to know I love them, my spouse needs to feel appreciate and respected and I need to be ME.

Thank you :)

Angela said...

You know what? You're an amazing mother. That girl of yours is so blessed...and I can't help thinking you must have been hand-picked by a higher power, because reading that post, as a mother myself, I was amazed and inspired. Amazing woman. Amazing mumma.

Mammy said...

Precious Lady, I have read your blog since Nella's birth, bought your book to share with friends. I am a grandmother of a child born with Charge Syndrome. He has endured a dozen surgeries, has three nostrils, is blind in one eye and has numerous other difficulties. He came to live with my husband and I after his parents were arrested for drug possession and went to the penitentiary when he was 18 months old. He has speech, physical and occupational therapists. He will always have problems in this life. But he is ours. He has brought more joy to our lives than we could ever ask for. Yes, we have been through some difficult days to get to this stage in his life but we are so proud of how far he has come. His classmates are loving and protective. We realize that the world can be cruel but we try to prepare him for that and trust that our God will make a way. Relax,enjoy your sweet Nella, knowing that today is all we have control over. Don't waste a minute worrying about tomorrow's troubles. God will provide grace sufficient for that day! Be encouraged!

Jennifer Ketterhagen - Finding Joy and Sharing Beauty said...

It's a blessing that you share your love for sweet Nella and all your beautiful babies with us. Even when you're sad and worried you have this gift of lifting others up. As you've written before about your "net," don't forget that you have this whole secondary "net" of online friends who are thinking about and praying for your family. No one is more wonderfully equipped to love and help Nella than you. Prayers and Hugs.

Renee from A Baker's Dozen said...

Wow, amazing post. I was already going to post a comment about my amazing son, Apollo XIV, when you starting writing about Apollo 13. One of the best movies ever, for sure!

You photographed my son Apollo at Everybody Plays 2013. He looks healthy. He looks good. He also has had two heart surgeries and has a g-tube because he can't eat enough to maintain his weight.

We too struggle with how much of our struggles are "Apollo" and how much are results of numerous surgeries, hospitalizations, medical procedures. It is nearly impossible to maintain a schedule and discipline while in the hospital with a toddler. Apollo gets tired a lot...is he refusing to pick up his toys because he's tired? Or has he learned how to manipulate his condition to get out of work?

I dont' have the answers, we struggle a lot. But Apollo is a beautiful, cherished little boy, just as Nella is a beautiful, cherished little girl. We will survive. They will survive. We're really in this together as parents.

Amy Chiampo said...
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Shannon said...

Thank you so much for sharing this post. My little bitty is about 1 year behind Nella, and the last couple months have been all about making difficult decisions and transitions. Sometimes it's so hard leaving warm and fuzzy behind and doing things that will hopefully be for the best in the long run. Thank you for sharing your vulnerabilities - it is good to know I'm not alone.

Eleni S said...

I stumbled upon your blog a few weeks ago by accident. I read Nella's birth story, I have NEVER been so moved in my life. You are truly an inspiration, such an amazing person and mother. I told my sister about it right away and we are both hooked on your blog. God bless you and your beautiful family.

Emily Kintner said...

So So get this... I have a little boy who is "normal" and he is so hard. He has such a challenging personality and we struggle with so many things that we feel just make him unique but I cannot help worry about what will happen when we enter the school system and that conveyor belt of standards and sameness. All we can do is everything it takes. Keep going mama!!!

Maggie said...

Inspiration here: http://storylineblog.com/2013/12/15/sunday-morning-sermon-a-lesson-from-a-down-syndrome-restaurant-owner/

and

http://timsplaceabq.com/

Jessica Fealy said...

Kelle - you write some amazing, amazing posts! This one was so powerful - how you always have such insight is amazing! Love your blog so much!

Susan Martin said...

LOCK that focus, sister. Lock it.

Laura Luyt said...

Sister.
Tears.
Dammit, how did you do that?
I so so so so so needed this today, right now, in this moment.

bless you, firey mama.
thank you for being like the phoenix who blazes a way for others, sometimes.

Katie Hartsfield said...

My daughter has Down syndrome, Autism, and apraxia. She's 9 years old and as she's aged, I've felt the weight and nuisance of that damn square peg. (Damn you peg!) But I've also learned the importance of finding the humor, never looking too far ahead (it'll get you down every-single-time!), and always always celebrating the small things. Things like her laugh. A good day without behaviors. A new word. Her hugs. And like you, I always try to rise above it all and find the good.

I have a friend from Brazil and she says that when her family and her would encounter someone who has a lot on their plate, they will jokingly say, "They got in line 3 times". As if to say, before they came into this life, they got in line before God one too many times with their list of everything they wanted to accomplish...and they were overly ambitious. And that share of hers always stuck with me. I'm not sure, by the way, if that's a globally accepted thought -- so no one quote me. ;)

Anyway.

So here's where I share with you how I find the humor. Well, one of the MANY ways. On the tough days, I imagine a little scenario in my mind like this: My girl and I at a DMV type looking hangout. Only this "hangout" is waiting our turn to go before God and through his pearly gates. ;) We're in line and waiting our turn, with our little torn off numbers in hand. And then I imagine our numbers being "called" and us being asked to come before God with our list of things we'd like to accomplish in life. (I have a wild imagination...so just keep going with me here) And then, I imagine myself glancing over at her paper and noticing that it's completely covered in checked boxes in bright green crayon. Like the girl lost her dang mind and got overly ambitious. I then imagine her leaning over to me and saying, "Oh yeah, I can do it ALL! You may think I can't but watch me. I can have Down syndrome. I can have Autism. I can go without speech. And I can still change lives. I can still have a purpose. And heck yes - I can still be happy. You in this with me?"

...And then I imagine myself looking down at my paper and staring at the same checked boxes and smiling. I imagine me leaning over to her again and saying, "Oh yeah, girl. I got your back! LET'S DO THIS!" (::knuckle bump::)

Though it's completely made up -- that vision of her and I agreeing to tag team and ride together in this wild and crazy journey called LIFE -- always brings a smile to my face. There are tough days, Kelle. Many. And I know you know that. But if you always look for the good, as I know you do, you'll make it through. And what you'll come to find, if you haven't already, is that your girl is going to teach you more about this life than you could ever possibly teach her. We're raising the wise souls; little life changers. And it's all about taking it one day at a time. :)

((HUGS)) from one DS mama to another.

Chasity Rollins said...

Hi Kelle-I've never commented before but I've been reading your blog for a long time. I have a beautiful little boy with Down Syndrome. He's 6 and is in full day kindergarten this year. I totally understand what you mean about what part of Nella is her personality and what part is part of Down Syndrome. We struggle with that some also. And knowing what he understands...I mean, does he understand when I tell him he can't do that because xyz or is he just being a stinker? It makes it so hard sometimes to know what the right thing is. I wish I had advice to give you but just wanted to let you know you're not alone in that and it's nice to know that I think. I'm really excited tonight though because we had an evaluation today with a new speech therapist using 'talk tools' therapy. A friend of mine is a speech therapist and had just recently learned about it and told me I should check it out--it is a muscle based therapy that attacks that low tone our babies have and I'm so excited to see if it works for Spence. You can google it and check it out. It makes sense to me at least to attack the root of the speech delay (i.e. weak muscles) instead of spinning our wheels treating symptoms. At least I have high hopes for it, and now I have tools and exercises and a follow-up appointment too! :) My little man has so much to say and we're working hard to figure out a way for him to say it!

Soraya Drew said...

I'm sitting here in the hospital room of my two and half year old waiting for us to be discharged tomorrow if all his tests come back in the clear. It is a small step in our life as a parent with a child with Russell silver syndrome, a growth disorder that has obstacles but so much joy and I'm reminded again by you Kelle that I am not alone. Your posts are poignant for me and incredibly inspirational. I do need to unload and then hit the gas pedal and stop worrying. Another post that hits it out of the park!

Farmgirl Paints said...

Love that you have a community of support. That you are all figuring it out together. You're like me and want it all to unfold right now. You want to see the end and how it's gonna look and we just have to trust that there will be grace for each step as it comes. Hugging you and praying that the steps will be clear and that the answers will come at just the right time.

Savannah said...

homegirl, you knocked this one out of the park. i'm not a parent (yet), but am dealing with some challenging worries lately (aren't we all). apollo 13 will always be one of the movies most dear to my heart, because it was my dad's favorite film as i was growing up. i love that solo scene with tom hanks where he talks about the fluorescent algae leading him home when all of his instruments had shut down and there was nothing else to guide him. there's a lot of symbolism in that movie, apparently. a lot about work and perseverance. and faith. thanks for pointing that out to me today.

Csunshinegirl said...

Kelle, I have followed your blog since Nella was born and I also have a daughter with Down who is a year older than Nella. You do a REALLY good job of hiding any delays Nella might have. From the appearance of this blog, Nella has no eating, sensory, gross or fine motor issues and she is talking in SENTANCES. Most kids with Down have one or more of these issues. I seriously have no clue what you might be worried about. If Nella has any delays, they are VERY VERY mild. If I had a child like Nella, I really wouldn't be very worried at all.

Yes as others have said, one foot in front of the other. Don't worry about the future. I think Nella will be just fine. She will have a job and will most likely drive a car.

KWQR said...

So excited for Nella's next adventures... leaving the feathered nest is a big step... but so many amazing things await.
xo
Kate