Carrying On

Today is a bitter-sweet day at our house.

Today I am saying goodbye to a faithful friend, one who has really lended me support over the past few years, one on whom Ellie has depended on many occasions.

I am, of course, talking about my Ergo baby carrier.

That’s right, after four solid years of use, Ellie has out-grown her Ergo.  I couldn’t have asked for a better carrier.  My only regret is that I didn’t get it when the girls were first born, because it would have really made those first few months a lot easier.  As it is, the Ergo enabled me to do things that would have been impossible without it, like hiking, going to the fair, and eating with both hands when Ellie was sick and refused to be put down.  I love my Ergo.

All good things must come to an end, however, and it is time to pack up my old friend and send it off to someone else, who I can only hope will appreciate it as much as I did.  While still technically under the weight limit, Ellie is simply too big to fit comfortably in the Ergo now, and it has been getting progressively less comfortable for me to wear her on my back over the past six months.  So farewell, old friend.  You will always be remembered as the single most useful baby item I ever owned.

“But wait,” you say, “You said today was bitter-sweet.  Where is the sweet part?”

Well, my friends, let me introduce you to the newest addition to our household…..

Picture 117The Beco toddler carrier.

Picture 125Holy crap is this thing awesome.

New to the relatively small market of toddler carriers, the Beco is all that I could wish for in a carrier.  Besides the considerable size difference between my baby Ergo, I am loving the way it is constructed.  The waist clip is adjustable from both sides, so it can be clipped right in the middle, which I find a lot more comfortable.  The shoulder straps are SO much cushier than the Ergo, and they are really easy to adjust.  I’m no longer getting strangled by the chest clip, either, which is a very nice change.  I can even wear her on my front, something I haven’t been able to do for a really long time in the Ergo.  There is a little pocket on the waist band, a snap-on zippered pouch, and an adjustable snap-on hood.  It also comes with a super cute little carrying bag, so there will be no more flailing straps in the back of my car.

Ergo Baby on top of Beco Toddler.  Note the size difference!

Ergo Baby on top of Beco Toddler. Note the size difference!

Look how thick the straps are, compared to my old Ergo!

Look how thick the straps are, compared to my old Ergo!

Where can you get this wonder?  Well, I snagged one from Lil Tulips, and it only took three days to get to my house.  You can’t beat that for service!  Now, I know they are pricey at $200, but I really think they are worth the money.  I am notoriously cheap, but I know that I am going to use this carrier for at least two more years, and some things are just worth investing in.

All packed up in the little storage bag.

All packed up in the little storage bag.

Especially when you have a child who has special needs.  Because while a toddler carrier may be a convenience item for most families, it is pretty much a necessity for us.  Ellie simply can’t walk for long on her own, and hiking is pretty much out of the question.  Add in her dislike for holding our hands and complete lack of stranger danger, and a carrier is a must.  I was really worried about what we were going to do when I realized that Ellie was going to outgrow her Ergo before she could walk really well.  Thank goodness for the all of the babywearing mamas out there who have spurred the carrier companies to create carriers for bigger kids!

Ready to hit the trail.  Or the mall.  Whatever comes first.

Ready to hit the trail. Or the mall. Whatever comes first.

So while we are sad to say goodbye to our friend, the Ergo, Ellie and I are very excited to start our Beco journey… one step at a time.

Someone was sad that this post wasnt about her.

Someone was sad that this post wasnt about her.

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Try

Unless you live under a rock, I’m sure you have seen the new Colbie Cailat video for her song “Try.”  If you haven’t, you can watch it here.  I think it is a great video with a great message, not to mention a catchy song that has been stuck in my head for two days.  While the lyrics have been rolling around in there, it got me thinking.  This is an important message, not just for girls and women, but for everyone.  So here is my non-rhyming, extended version of “Try.”

For the moms out there, trying to do it all, trying to clean the house, and make the beds, and keep the kids clean, happy, and healthy.  Trying to look perfect at the school drop off, worrying about your roots and your shoes and if anyone noticed the worn spots on your purse or the snot stains on your shirt.  Running the kids to dance and t-ball and gymnastics and karate.  Forgetting to eat lunch, but thinking it’s ok because you really need to lose those last few pounds anyway.  Searching Pinterest for a recipe for meatloaf that your four year old will actually put in his mouth while telling your kids that they can only watch one more episode of My Little Ponies, because you are worried about the amount of screen time they are getting.  Doing the dishes, cooking food that half your family won’t even eat, smiling for your partner because you know s/he had a rough day at work, and you really don’t want to burden them with the stress you have building up inside you.  Posting a picture of your smiling family on Facebook while editing the story of your super fun family picnic so people don’t find out that your drank too much wine and your partner ran over the beach ball and your youngest smeared poop on the picnic blanket, and now that you think about it, did you ever take the laundry out of the washing machine?  Yelling at your kids, even though you know you shouldn’t but you are just So Tired, and can’t they all just cut you a break?  Thinking you aren’t fun enough, creative enough, smart enough, energetic enough, put together enough, good enough of a mom for your kids to like you.

You don’t have to try so hard.  You don’t have to give all of yourself away.  You don’t have to be perfect Every. Single. Day.  You don’t have to worry so much about if people like you.  Your kids like you.

For the preteen and teenaged boys and girls who are just figuring out who they are, wanting to fit in but not knowing how to do it.  Worrying about being cool.  Begging their parents for the right cloths, the right shoes, the right phone, for makeup, for anything that makes them seem older.  Pushing their Barbies and toy trucks into a closet, even though they still like them.  Girls dumbing themselves down because boys don’t like it if you are smarter than they are.  Boys playing sports they don’t like, because girls don’t like wusses.  Hiding tears, hiding fears, hiding hopes and dreams until you can’t find them anymore. Forgetting what you want to be when you grow up in the hype of being cool now.  Swearing to sound daring.  Smoking your first cigarette to fit in, thinking addiction only happens to other people.  Feeling invincible and horribly vulnerable at the same time. Hoping the other kids will like you.

You don’t have to try so hard.  You don’t have to grow up today. Being true to yourself is cool.  You don’t have to change a single thing.  Don’t change so much that you don’t like you.

For the girl who has discovered that she doesn’t like boys in that way, who dates her best friend’s ex boyfriends because it’s the closest thing she can get to her.  Who changes the pronouns in her poetry to be more socially acceptable.  Who goes out with every guy who asks her so that no body knows that she doesn’t like any of them.  Who cuts herself to release the pain inside of her.  Who falls into the rabbit hole that is the internet, because that is the only place she can be who she really is.  Who applies for a college as far from home as possible in the hopes that she can just be herself there.  Hoping to find a nice girl who will like you.

You don’t have to try so hard.  You don’t have to bend until you break.  You just have to stand up, be proud, and find your own place.  Don’t worry, you’ll find lots of people who like you.

For the politicians on both sides of the ever-more-prominent dividing line between parties, getting too wrapped up in finding things wrong with the other side to actually get any work done. Letting the power get to your head.  Forgetting why you started out in politics in the first place.  Forgetting about helping people.  Forgetting about changing the world.  Right wing getting caught up in a religious debate that has nothing to do with making policy.  Left wing too busy trying to be clever to realize that you are losing ground.  Letting the country down as you pick each other apart.  Worrying so much if your constituents like you.

You don’t have to try so hard to make us look the other way.  You just have to shut up, suck it up, and work toward a better day.  Put your differences aside, they are what make this country great.  And stop worrying about how many voters like you.

For everyone with a hidden illness, trying to put on a brave face.  Smiling through the tears, working through the pain.  People telling you to man up and get over it, saying you don’t look sick, rolling their eyes when you call off of work AGAIN.  Popping the pills the doctor gives you, hoping that this time maybe they will work.  Signing up for clinical studies, looking for an answer.  Praying to your Gods for an answer.  Wondering why me?  What did I do?  How am I going to ever deal with this?  Hoping you didn’t pass it down to your kids.  Wishing everyone would just Leave. You. Alone.  But at the same time wishing someone would hold you tight and make it all better.  Getting glared at by little old ladies when you use your handicapped parking placard at Target.  Hearing them mutter about how you must have stolen it from your grandmother, because you are too young to need it.  Hiding the sorrow in your voice when you have to cancel plans with your friends and family because you just don’t have the energy left to see them.  Wishing that they understood you.

You don’t have to try so hard.  You don’t have to hide it all away.  You just have to reach out, ask for help, and make it through every day.  Don’t hide your pain, it is part of who you are, and your family likes you.

For the parents of children with special needs, sitting sleepless by their bedside, holding their hands until their little eyes close and their breathing slows.  Knowing you are going to have to get up in a couple hours and go to work or get the other kids up or run another feed through the tube.  Driving from one appointment to another, doctors, therapists, specialists, orthatists, psychologists.  Fighting the insurance company over and over and over again.  Applying for benefits that you know your child is entitled to, but you still feel guilty about needing to ask for.  Watching kids younger than yours do things you can only dream of your child being able to do.  Trying to quiet the voice in your head that keeps you awake at night, while it screams all of the things your child will never have, never be, never know.  Drying your child’s tears the first time that they realize that they are different and the other kids don’t want to play with them.  Fighting the school district for better inclusion, better anti-bullying rules, better training for the teachers who take care of your baby for the majority of her day.  Searching the internet for new studies, new treatments, new devices that could make your child’s life a little better.  Ignoring stares, answering questions, smiling at well-meaning people who just make things worse.  Fighting to get the R word removed from the world’s vocabulary.  Hoping for a better tomorrow for your child.

You don’t have to try so hard.  You don’t have to do it on your own.  You just have to love that child and enjoy every single day.  Just tell them “Baby, I like you.  I will always like you.”

 

You don’t have to try so hard.  You don’t have to bend until you break.  Take a look in the mirror and ask yourself, do you like you?  Cuz I like you.

 

 

 

The Firsts of Special Needs Parenting

This morning I read a great article about the “other” firsts that parents go through that we never really talk about.  Things like the first time you realized that you can’t call your mom to fix things, because YOU are the mom now.  And the first time you realize that you aren’t completely screwing up your kid.  Go read it.  It’s great.  http://www.huffingtonpost.com/kim-simon/theres-always-a-first-time_b_4641690.html

After I finished reading, I started thinking about the firsts that we, as parents of a child with special needs, have experienced.  So I decided to share them with you.

The first time a doctor looks at you with concern in their eyes and tells you that there is something different about your baby.  Maybe it happens right after your baby is born, when you are exhausted and full of birthing hormones and pain killers.  Maybe it happens a few months later, when your child hasn’t met any of their milestones yet.  Maybe, like me, it happens while you are still pregnant.  But whenever it happens, you won’t forget it.  The doctor with sad, worried eyes, speaking in low, soothing tones about statistics and DNA and special services.  That sinking sensation in your stomach as the words sink in.  The feeling of rising panic and helplessness as you try to figure out how “bad” things are.  The resignation and determination that follows, as you swear to yourself and your child that you will do everything necessary to help and protect them.

The first time someone asks what is wrong with your child.  And the mother bear inside you roars as you calmly explains that there is NOTHING wrong with your baby.  She is just a little different from other babies.  All babies are different and special.  And you will educate them about the syndrome/condition/whatever that your child was born with, and why it is not something that deserves pity, but that should be embraced.  All while screaming profanities at them inside your head.

The first time your child hits a milestone that you have all works SO hard towards.  Kids with special needs often develop at a different rate than other kids.  Laurel crawled at five months.  Ellie crawled at 18 months.  While we celebrated Laurel’s accomplishment, like any parents would, there was a bit more celebration over Ellie’s.  Because she had worked so much harder for it.  We worked on crawling every day for months on end.  Her physical therapist came every week and showed us new exercises to have her do to help strengthen her naturally low-toned muscles.  Mostly Ellie hated it.  She cried.  I cried.  Laurel cried in sympathy.  But one day, right around Christmas of 2011, she crawled across the floor from Chev to me.  And we all cried again, but in happiness.  Laurel danced around us, clapping and cheering for her Sissy.  It was a very good day.

The first major setback.  At some point, you will think that you have this whole special needs parenting thing under control.  Your kid is progressing along in all major areas, a couple of your specialists have told you that your kid doesn’t need to come back, and you are flying high. That is when it happens.  Your kid suddenly stops talking or eating or walking or starts screaming whenever you get them wet or pick them up too fast or dress them in anything scratchy or they get really sick and no one can figure out why.  And suddenly you are back at a new specialist’s office for a new round of tests, or you are meeting with new therapists for evaluations.

The first time a doctor tells you that you don’t need to come back to them.  Specialists are just part of life when you have a child with special needs.  For us, it has been pediatric cardiologists, eye doctors, ear nose and throat doctors, gastrointestinal doctors, and bone doctors.  The first year is a relentless round of appointments, tests, and observations.  But one day, one of the doctors will smile at you and tell you that your child doesn’t need a follow up appointment, and that unless you notice something else that pops up in a few years, they don’t need to see either of you again.  And you leave the office with a bit more spring in your step, mentally checking off a little box in your head:  GI issues….DONE!  And that feels SO good.

The first time you realize that you have GOT this.  One day it will hit you that you really do have this whole thing figured out.  You are an expert in whatever special need your child has.  You can spew off the list of doctors, practices, therapies, and medications that your child is seeing, doing, and taking.  You know who to talk to at the state or county government office that will actually listen to you and try to help.  You know what an IEP is, and have faced down the school board at least once.  But that none of that really matters.  What really matters is that you have learned to put all of that stuff aside and just play with your child.  We can get lost in the red tape sometimes, but one day you will realize that the most important thing you can do for your child has nothing to do with which therapies they receive.  You will find yourself sitting on the floor, playing with trains or stuffed animals or stuffed animals riding on trains, and you will realize that THIS is what it means to be a parent.  Not a parent of a special needs child.  Just a parent.  Because that is what you are.  And you will grab your little one and hug them close (whether they like it or not), and tell them that you love them, that you will always love them, no matter what.  And they will look at you like you are crazy and that is ok.  Because that is what all kids do.

Crawling

Crawling

Gold Star

Ellie is my Gold Star

Ellie is my Gold Star

I received an anonymous message from someone who asked if I had ever considered the possibility that having a child with Down syndrome was a punishment from God for going against his natural design and bringing children into a house of sin.

Once I finished laughing, I decided to answer this person publicly.

No. No, I have never considered having a child with Down syndrome to be a punishment for being gay and daring to have children.

In fact, I have never considered having a child with Down syndrome to be a punishment for anything. The idea that Ellie was sent as a punishment is completely laughable. She is the sweetest, most wonderful child I’ve ever known. She lights up my days, fills my heart with music, and brings me more joy than anyone or anything else ever has. If that is a punishment, sign me up for more!

I have never believed that the powers that be go around handing out punishments and rewards based on our actions. But if they did, Ellie would be a reward. The best reward. In fact, if that IS the way that it works, then I’d be willing to bet that the parents of kids with Down syndrome all did something REALLY great at some point.

As for the implication that being gay should be punished…. Kindly go fuck yourself. I refuse to get into the whole gay/sin issue here, just for your benefit. I will simply say that being gay isn’t a choice. It is how I was made. And guess who made me? Yeah, the big guy upstairs. In his image. Just like you. Who the hell are you to judge me, just because I was made differently from you? Please un”Like” me and go live out your life in bigotry somewhere else.

So…there you go. Ellie can’t possibly be a punishment for Chev and I being gay. Because God doesn’t go around handing out gold stars and demerits for being who He meant us to be. And if He did, Ellie would be the brightest gold star of all.