The Daily Mail response

This being Down syndrome awareness month, I feel I have no choice but to come out of my blog-coma and continue to educate and dispel this ridiculous notion that Down syndrome is any kind of “death sentence”.

One month ago, my family participated in the Step Up for Down syndrome Walk in our town.  It was our second year participating and since I’m now a seasoned Down syndrome veteran (wink, wink) I was in a better place to observe and enjoy rather than grasp desperately for comfort and “normalcy”.  The weather was awesome, our supporters were amazing and David basked in the attention.  As I looked around at the participants, I realized there were a few distinctions.  I don’t know if there’s any other condition with such a physical representation of growth, change, education and awareness.  I broke it down mentally like this (disclaimer: this is my OPINION and in no way based on research; strictly observation and my own personal experience).

There seemed to be 3 distinct “groups”.

Group one: 25+ years old “Ok, you’ve been born with Down syndrome & we’re not going to institutionalize you anymore, but we have no idea what to do with you so you’ll have to figure it out on your own.  Good luck parents.”

Group two: 10-25 years old “Ok, you have Down syndrome and we’ll let you come to our ‘typical’ schools, but we’re not exactly sure of any programs or services that will best help you and we don’t have the resources to try.  Come join us, but still . . .  good luck parents.”

Group three: 0-10 years old. “Ok, you have Down syndrome.  That means you have your own unique set of challenges and skills.  Here are a ton of programs, resources, services, support groups, books and research that will help you.  If you can’t find what you need, let us know, we’re here to help.  Parents, let’s work together.”

I get that these are gross generalizations and I am in no way insinuating that there is no hope for older individuals with Down syndrome or that certain programs and individuals have not been working for the greater good for years.  It just seems to me that the younger kiddos with Down syndrome were truly thriving.  It was clear that there is a new generation of Down syndrome awareness and support.  One that promotes acceptance, encourages strengths and uses every resource in their toolbox to make sure that individuals with Down syndrome can be the very best they can be.  Just like every other child on the planet, kids with special needs deserve to have the opportunity to be the best they can be.  It may not be a rocket scientist or a neurosurgeon, but maybe it’ll be an artist or musician or teacher or policy maker.  I’d be pretty dang proud if David looks at me one day and says, “Mama, I love what I do and I’m good at it!”  Isn’t that all any parent can ask for?

I pity the British woman whose son was born in an era when Mongoloid was still an accepted term.  I can’t image she received any support or resources and I can only hope she did the best with what she knew.  My gut is that if she had been educated and used her mama bear instincts to fight for her son, he would be in a very different place today, and likely so would she.

So to all the parents fighting the uphill battle of autism, dyslexia, Down syndrome or other “disabilities”, I say, Fight on!  Give your children every single opportunity you can.  Search high and low to make sure each & every one of your kids reaches their full potential.  If at the end of our lives, we can say that our kids are the very best versions of themselves, doesn’t everybody win?

The (second) walk

First of all, happy Down syndrome awareness month!  I feel like our lives are basically a walking advertisement for the awesome-ness that is Down syndrome so I don’t know how much I’m going to post, blog or fawn over this month.  I’ll post when I feel inclined but may not make too big a deal of it.

Now, onto the fun stuff!  The Step Up for Down syndrome Walk!  We had ours in Denver last weekend and it was awesome!  We had almost 40 walkers on our team and raised just under $1,500.  The top team raised $15,000 so you know . . . we almost got there :)  After our cluelessness last year, we wanted to be bigger and better this year.  Mission accomplished!  We had an awesome, enthusiastic team, yummy food and a great spot.  Team David’s Giants were supportive and excited, but the real treat was that the man of the hour, David himself, was there!  Last year we were so honored and sad to walk for him instead of with him.  This year he made up for it.  He fell asleep about halfway through the walk but woke up in time to enjoy food and friends after.

Each year, we have plans to expand.  This year, our focus was on food so people could stay and enjoy.  Next year, it’ll be shirts; the next, a fancy sign?  Who knows?  All we know is that this is one tradition we are so happy to be a part of and an annual event that hopefully by the time he’s a teenager, makes us the top raising team?  Definitely a goal worth striving for!

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The whoops

You know that dream that we’ve all had where you’re giving a big presentation at work or you’re walking into your first day of high school and you’re naked? It’s mortifying and embarrassing and you’re not quite sure when it will end? In the blog world, the equivalent of that dream is publishing a post before you proofread it.
Last night, I posted a sweet, heartfelt post about my children’s first day at school. Unfortunately, a text exchange between Jason and I was inadvertently included in the post. We used some “choice” language and it was probably more than a little shocking to those of you who were reading it. Thank goodness for dear friends who alerted me right away, and I was able to fix it on the site; however if you are a follower you received the original in your email.
I can’t apologize enough. All I can say, is I truly don’t use that kind of language in my every day life. It was a intense message between husband and wife after 10 days and over five hours of being on hold & conflicting responses and answers from our county Medicaid office. That’s not an excuse, but anyone who has ever dealt with a government agency knows the type of hair pulling frustration that often accompanies it.
Lesson learned; read, reread, and reread again before I ever click that publish button. Thanks for your forgiveness and your grace.

The first day

Okay, okay this post is long overdue. The first day was technically last month, but as any mother of children starting school will tell you, getting anything done beyond packing lunches, picking out clothes and implementing early bedtimes is pretty much impossible.
David started his new therapy daycare the week before Ella started preschool. I was worried about him since he’s always been at a daycare facility with her and he’s pretty much obsessed with her. He adores her and is mesmerized with her so I knew a separation would be rough. The first day I dropped him off he actually cried for me. I’m going to go out on a limb and say sometimes mothers actually like when their children cry. Hear me out, trust me. I would never want either of my children to cry out in pain or fear, but David’s attachment to me was a big fear of mine when he was in the NICU. I remember crying after I would hang up the phone with the nurses at night. It’s unnatural for a mother to ask a relative stranger for updates on her own child.  I was afraid he would become so attached to the nurses that he would never truly bond with me.  As a therapist, thoughts of RAD and other attachment disorders flew through my head at lightning speed, and I was afraid of what the future held. So when the nurses and therapists at his new daycare told me he was a little sad when I left, it felt good, it felt right & it assuaged any fear I had last year.
Ella, on the other hand has been a different story. My social butterfly, my future class president has had a rough transition. She spent the first two weeks making excuses to make us late. She begged me not to leave, clung desperately to David and I and we left her in tears every day. It has been a battle to adjust for sure. No amount of cute clothes or special treats in her lunch was doing the trick. Finally, a solution! She was sick this week. Weird, right? But her boring day lead to a newfound appreciation for school. She practically ran in the door this morning!
Newness is upon us. They are both adjusting probably quicker than their parents. And the best news? They still adore each other!
Happy Fall!

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The anniversary

One year ago today was a life changing day.  I’ve never before and fortunately, never since, experienced such fear.  I’ve never come so close to the edge and I pray I never have to be there again.

I can’t speak for all parents of special needs, but for us, on David’s journey, there have been celebrations, milestones and anniversaries along the way.  There’s of course, the day he was born.  The day we actually got to take him home.  The day his heart was “cleared” and cardio check-ups were complete.  But there are also days worth celebrating that you’d like never to remember.  Today is one of those days.  One year ago today David almost died.  I can hardly type the words, it still seems too dangerous to even write.  We were so close to losing him and even that day, my mind stopped me from going there.  What parent could?  So we prayed and cried and paced and literally clung to him and prayed some more.  And God answered our prayers.  David survived.

So today is our anniversary and that calls for celebration.  I celebrate that David is with us and cheer for the moments we’ve had over the past 365 days.  In the same breathe, I mourn the people we were before that horrible day.  We are forever changed.  In some ways for the better and in some ways . . . well, I guess we’ll see as time goes on.

David is a survivor and today, as difficult as it is to look back, it makes looking forward that much sweeter.  I’ve seen the dark side of “what could have been” and I much prefer where we are now.  Thank you for all who prayed for our sweet boy and continue to pray for him.  God willing, there are many milestones and happy anniversaries to come.

D

 

The balance

This morning I heard David in his bed “talking” to himself and making sweet baby noises.  Immediately I thought, “I miss him! I want to go cuddle him!”  So I went in, picked him up, changed him, talked to him and began our day.  He was happy and smiling and I was blissful.  In the middle of our routine, Ella woke up and came in.  She, like her mother, is not a morning person, so it took her a few extra minutes to become charming.  Ella requested pancakes and I thought, “Why not?”  So I put David in his bouncer, made myself some coffee and started making chocolate chip pancakes.  It was all very glossy magazine, very 1950’s housewife, very Pinterest perfect.  Until I realized that we had to be out the door in 20 minutes, my hair was still in a towel, I was in my robe with no make up and I had two children still in pajamas.  The hurricane that usually defines our mornings hit and we sprinted through each room, brushing teeth, grabbing toys and food for daycare and running out the door.

Why is so hard to find balance as a mom?  When my kids are underfoot, I often feel frazzled and dream of “me” time.  I find excuses to distract them so I can take a break.  Our mornings are often filled with the sounds of, “Hurry!  Get your shoes!  Have you brushed your teeth?  Hurry!”  But, when I’m away from my kids I miss them so much, there’s a physical ache.  I could hardly wait to burst into David’s room and see his sweet smile.  I get excited when Ella wakes up and I can give her a big hug and ask about her dreams.  But, that all usually lasts for about 10 minutes.  And then Ella bites David and he needs a diaper change and I still haven’t had coffee and I’m wondering why I was so eager for them to wake up early.

This last weekend, I was able to get away with a group of dear friends.  We stayed in the mountains, ate at delicious restaurants, spent the entire day at the pool and actually chatted and read and never set an alarm.  It was amazing and just what I needed.  By Sunday, however, I missed my kids and husband.  The last two blocks home seemed to take 30 minutes.  I couldn’t wait to hug & kiss them all!  It was an awesome reunion and a wonderful 36 hours of family time.  So, why by Tuesday morning am I ready for a break again?  Why is it so easy to swing back and forth from obsession to aggravation?  Is there any consistency to motherhood?  I can imagine that the minute I feel like things are actually good & everyone is happy and at peace, they’ll be teenagers and not want anything to do with me.  I know I’m going to miss these days, but the fear of the unknown future doesn’t create a peace about the present.  

This isn’t even necessarily the guilt I’ve felt in the past.  This is something different.  This is not being able to have consistency and personally, that’s something I thrive on.  When I want to have blissful moments and happy playtime with my kids, I want them to be easy and polite and fun and engaging.  But, when I need to do dishes or cook or put laundry away I want them to quietly color at the table and not scream and never cry and make even my chores seem easy.  So, that’s never going to happen.  The only thing that can change is my attitude.  That, and an earlier alarm in the morning.  I’m not going to pledge to enjoy every minute of crazy mornings and feisty toddlers.  I know I’ll never relish in screaming and hitting each other and having to give time-outs.  But, the mess makes the good times that much sweeter.  So when David sits up by himself and Ella brings him a toy and they are laughing and I get to be a part of that, I will soak it in.  I will let it overwhelm me and then when it’s not so pretty, I’ll have some wonderful images in my head.  Oh, and I’ll let my children sleep and have just one more cup of coffee before I wake them up.

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The changes

Fall is nearly upon us. Being married to a teacher, fall is always a fresh start for us. Back to school is always the norm for us, only this year, we’re a part of it, not just observers.
Ella is starting full day preschool in 2 weeks. She’s been in daycare, but there’s something about getting a school supply email & shopping for back to school clothes that just feels different. She’ll never not be in school again!
David is beginning a new therapy daycare that is going to be amazing for him! He’ll receive daily speech, physical, occupational & feeding therapy. He’s going to grow so much this year!
This will be the first time both our kids will be at 2 different facilities. I don’t know who it’s going to be harder on, the parents, or the kids! David loves Ella so much & she is so good with him. I’m excited for them both, but I already miss the special bond their daily interaction brings.
Here’s to a fresh start & new experiences!

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The juggle

Every single person who has more than one child tells you they love each of their children equally. They tell you for as much as you love your first child, your heart just gets bigger and makes room for more love when your second arrives and then your third, fourth, etc. But, if pressed, many of these same people will tell you that they secretly have a ‘favorite’. It may be the easiest or happiest child. It may be the child most like yourself or more likely, the child the most polar opposite of yourself. So, understandably, it’s confusing.

When I was pregnant with David, I had these same fears. Could I love two equally? I was so over the top obsessed with Ella and thought everything she did was amazing (and of course had never been done before) that I couldn’t imagine her brother would come close. Ella is an overachiever, a go-getter, pretty much as close to perfect as I could’ve hoped for. Through David’s pre-natal diagnosis and my pre-natal ideas of Down syndrome, there was no contest; Ella was the victor for my affections.

And then, he was born. This sweet, precious, innocent baby came into the world. Early and ‘imperfect’ and not at all the way I planned. And he was so wholly reliant on Jason & I to make the very best decisions for him. And the best way we knew how to do that was to love him. Every single decision was based 10% on medical advice and 90% on insane, overwhelming love. He was David long before we met him. While we struggled and grieved and mourned and plugged along he was David. He was just waiting for us to meet him.

What an awesome God we serve that sees the big picture and knows us better than we could ever hope to know ourselves. He knew our love for D would overwhelm us, shake us to the core & change us forever. How blessed we are to be gifted with such life-altering love!

I don’t have a favorite child. My children each have my heart in their own unique way. But I will forever be grateful for the day my son rocked my world, turned me around and changed me for good.

“Before I formed you in the womb I knew you, before you were born I set you apart;”
Jeremiah 1:5

The sibling

This morning, I heard David talking in his crib. Ella was up, but I was still in the shower so I asked her to go and entertain him until I could get there. This is what I walked into

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Ella is such a good big sister to David & as you can see, they adore each other. I cannot wait to see this relationship bloom!