Sunday, May 15, 2016

Caught Between Baby And Child

There comes a point when that adorable baby with Down syndrome grows up into a child with Down syndrome. There comes a point where the child maybe still acts like a baby in certain areas, but no longer is a baby. Age-wise, this child fits with the older kids, but behaviors perhaps don't allow this to be the most feasible placement solution.

There comes a point when this child with Down syndrome hangs precariously between the baby and child category, fitting completely into neither side.

There comes a point when a child with Down syndrome needs a cheerleader more than ever.

Yes, the early on health issues are SO HARD. And yes, dealing with three years of constant therapy is wearing. Beginning preschool and holding your breath about this big life transition- tricky, yes. But navigating life with a 6 year old who struggles to communicate and uses bad behavior to compensate for this struggle- a child who others might struggle to "get"- a child who might still have some very babyish behaviors- a child who doesn't naturally go along with the natural flow of "age category"- a child who technically is ready to be pushed to the next age of activities but who just so isn't ready- this is the time to step up and practice what I have preached for the past six years. This is the time to cheer for her. To "get" her when no one else can. To make an in-between age category for her. To love her right where she's at.
This morning in church nursery, Addison was quite aggressive in her behavior toward other kids (the class is now filling with younger kids- the ones Addison's age are graduating out). Also, Addison bolted from nursery and disappeared for a while (this is a BIG problem with her...the biggest reason we are selling our house near a busy road). This morning it became very clear that Addison needs to graduate out of this class because it's just not working for her anymore. But the other kids graduating, they are all going to an "big kid church" option that Addison would need a one-on-one aide to successfully navigate.

So I ponder- she is "too old" for nursery but "too young" for big kid church. Where does she belong?

And I realize- this isn't a problem with our church or with nursery or anything in between. This is the reality of having a child with severe delays- of parenting a child with special needs.

There comes a point when it is up to the parents to make a place for her to belong. To hold a space for her. (Side bar: this is why I LOVE that she has 3 siblings. She has a built in space where she will always belong- defined to fit exactly HER.)
So we make plans, and we decide to keep her with us in big church- taking things to keep her occupied- to try a new level of training to keep her in church in-between us- and we are happy with this because it seems like the next thing to try.

But even though we have found a solution to this specific instance, the problem doesn't go away. It will come again. And again. And again.

Because the reality of special needs parenting is, defining categories and making a place for her to belong and cheering for her- this is a constantly changing picture. A moving screen.

And while people are quite eager to cheer alongside a picture of an ADORABLE baby with an extra chromosome, sometimes they aren't so quick to cheer with an older child facing life issues that come with being older and yet younger at the same time.

I spent a lot of time blogging when she was that adorable baby. I blogged that she "deserves just as much respect as any other child" is "worthy of life". I blogged that we fight WITH her. I blogged that she was capable of doing ANYTHING she set her mind to. I blogged that kindness was king. I blogged that she was "rocking an extra chromosome".

Now that the time has come that from the outside looking in at my child/baby, some might not agree with all of those sentiments. And so I am here, setting aside the busyness of the four kid thing to say, she STILL deserves as much respect as any other child. She STILL is worthy of life. She STILL gets us fighting with her. She STILL is capable of doing anything she sets her mind to. Kindness STILL is king. She STILL is rocking her extra chromosome.

The game may change as life continues on, but the rules remain the same- "LOVE ADDISON".
I get discouraged at times because she isn't doing as much at the end of kindergarten as even her peers with Down syndrome. She isn't reading. She can only count to 15. She isn't fully potty trained (she is fully "aide" trained).

There are a lot of "she can't"s.

But I am learning- it's not about my timeline for the "cans". She will do all of these things- when she is ready. It takes her a bit longer to learn certain things academically...and behaviorally (thus the problem with nursery), but she WILL get there. In the meantime- we focus on what she can do now. (And believe me- she has her very own unique set of skills. I think I might hire her to dress the family. Girl has got style...and possibly an 80s style workout DVD (-;)
And when she does accomplish the things she works extra long and hard to get- it is ALL her, baby. She is a rock star. We may be stuck between baby and child in certain areas, there may no longer be a nursery category for her at church, we maybe repeating kindergarten (maybe)- but my baby girl Addison is a TOTAL rock star. And I am proud of her.

It's not about achievements. Worth isn't valued by accomplishments. Value isn't tallied by "she can"s.

I am proud of Addison because she is my girl. She takes her skills, and she works hard to push herself forward. She comes at life with her own view, own opinions, and own agenda. She adds value by just being Addison. She doesn't need to earn it. She certainly doesn't need to prove it. And just because there isn't a "WOW LOOK WHAT SHE CAN DO EVEN THOUGH SHE HAS DOWN SYNDROME" story about her floating around facebook- her life is priceless. She is worth is all. She holds the highest value possible- she is a person. Her very own person that I am privileged to call my daughter.

Because when others may see "runs away and hides in the men's restroom" I see this as her way to communicate something like- hey, she has to go potty but maybe had a hard time communicating this. Bad behavior equals communication in the Addison game more often than not. And you have to be listening/watching carefully or else you miss what she has to say.

This is the point when "getting" her takes more work- more creativity- more getting down eye level to her and looking inside to see what is there, not what we think should be there.

And it is worth it. Oh it is worth it.

Difference isn't always "cute baby smiling on facebook plastered with a motivational meme". Difference is sometimes a little girl acting out- against your friend's kids (omg!)- because communication is too hard. And these moments- struggling through them- learning from them- these are the moments where the motivational memes could draw some inspiration. Difference is a 6 year old with more potty accidents than her 4 year old brother. Difference is crossed eyes even after surgery and driving a million hours for specialists appointments. Difference is sometimes awkward and messy and doesn't fit inside any mold.

But at the same time- difference is beautiful. Breathtaking. Complex. Fabulous. Because it isn't a label. It is a person. A beautiful person working hard to make her own way through this tough world.

A beautiful person I am proud to cheer for.

Tuesday, May 3, 2016


It seems that wherever I go with my full clan (and sometimes even with just part of my clan while Addison is at school), I get a lot of long looks. Eyes widen, bodies quickly move out of the way as I run with my cart full of children to the checkout before the baby's crying escalates to screaming, and then as they continue to stare as I juggle the baby, the toddler, the 4 year old deliberately antagonizing the toddler, the cutest little girl ever with special needs, my cart full of groceries, and my bag overflowing with all the stuff to take care of my cart full of people while really REALLY hoping that my wallet is in there somewhere and I didn't leave it at home (the horror).

Without fail, soon after this comes the words, "Wow. You are supermom! Look at you!" Some people even bow as they walk by. (I claim writer's license to exaggerate in order to use a story to make a point).

I'm not sure why so many people have been saying this to me lately. It always leaves me slightly speechless. This also happens when people follow my life via Instagram pictures- getting small glimpses into the parts of my current life that I chose to freeze into a photograph- the moments that I want to remember later (sometimes just to laugh at). I can see how this might paint a glowing picture. A cropped photo paired with a witty sentence or two- yes, this tells part of the story. The thing is, I don't take pictures of the moments that frustrate the dickens out of me. The ones where the baby is screaming and the toddler is bouncing on my knee yelling for a horsey ride while I try to get the screaming baby to stop screaming and nurse....where the child with special needs is at that exact same moment having a potty accident on the rug (but not on the hardwood floor...oh no. never on the floor where messes are the easiest to clean up) and the 4 year old is off opening windows that he will later attempt to lure the 2 year old to dangerously hang out of. These moments when it is just all too much and I snap at my beloveds to "STOP! GET OFF MY KNEE!" and "WHY CAN'T YOU JUST USE THE POTTY! YOU'RE SIX YEARS OLD!" and "IF YOU OPEN ONE MORE WINDOW YOU WILL BE IN TIME OUT FOR THE REST OF YOUR LIFE."

I don't take pictures of the moments where my children's faces fall. Where they get snapped at. Where I sit with the now peacefully nursing baby, feeling like a complete failure. Where my good intentions to always be sweet and calm and quiet and only refer to them as "My darlings" go in the same toilet that Addison chooses to ignore. Where they scamper off to make mischief somewhere else and then mimic my same snapping tone toward each other.

I don't take pictures of the moments where I bow my head and plead for help. Where I search for the tiniest bit of patience left within me, find none there, and beg for Someone else's patience to take over. A much bigger patience that is endless, that I can lean on to find some strength.

I am not a Supermom or Super Woman or a Super anything (Except maybe a Super Coffee Drinker. My cape is an oversized filter.)

I am just an average mom with four amazingly beautiful children...with the tendency to fail...but with the refusal to stay there because I know I'm not in this on my own. Yes, I yelled at them. I apologize. I call them "My darlings" again. I kiss their sweet cheeks, still wet with tears. I hold them close and they cling to me, needing so much from me- so much that even after I'm exhausted from giving, they still take and take some more. So I keep giving. I whisper in their ear how much they are loved. I hold them as long as they will stay there, refusing to end the hug on my own. I breathe in their scent, their essence, their personhood that has completely stolen my heart.

And we try again.

So often the sticky moments collide with the messy moments and the fractured moments and all of a sudden the confusing mix of puzzles pieces all line up into the most beautiful picture. A picture of love and belonging and family and home. A picture that I am blessed to be a part of. A picture that I did not design or draw- but here it is, more perfect than I could have ever imagined it.

Addison is quite a mother to the baby- she begs often to hold Morgan. And if Addison is holding her, the boys come swooping in, eager to sit close and plant wet kisses on their baby sister's head. They giggle. They smile. Their small bodies wiggle to get closer to the next. "Gentle" and "Soft hands please" come quietly out of my mouth as I watch their relationships blossoming in front of me. In these moments of serene beauty, I feel beyond blessed. I feel humbled by who they are becoming. I feel thrilled when I see them mimicking gentle, kind behaviors toward each other. I feel challenged when I gently try to teach them, guide them, and continuously help them.

There is so much to learn. And not just them.

I never know what to say when people tell me they think I am Superwoman. I'm not. Not even a little bit. It's embarrassing how much I fail. (After one particularly difficult week of having to yell to get kids to the van to get them to school on time, I didn't yell at all. Yay! Except when I went to drop Carter off he says, "Mommy, wait! I can't get out of the car until you say sorry for yelling. Right?" Because my apology had become so much a part of his morning routine. Oh my gosh ouch.)

But even though my world right now tends to be a swirling mix of confusing chaos and more stumbles than I can count, I am thankful for how forgiving my children are. How eager they are to try again. How happy they are for these moments with me. How bright their faces light up when yelling is replaced with gentle teachable moments. When they are understood, loved, given a safe spot to do life. When they eagerly learn things from me- not just how to succeed, but how to fail, get back up, and try again.

I am thankful for them. Super, super thankful.