Tuesday, July 31, 2012

Pneumonia

Last Monday Addison felt a bit warm, so I rushed her to the doctor. Her temperature was 101.9. The Pediatrician said not to be concerned; it was just a summer cold; her lungs (always a concern because of her pulmonary hypertension) sounded fine. We toughed it out all last week as she battled her cold.

Her fever went away on Wednesday and came back Thursday afternoon and then went away again on Friday. And then Saturday- when all physical symptoms were gone, she started screaming and pitching a fit over everything and, well, nothing. We took her to Moes for a cheese quesadilla- she screamed bloody murder. I buckled her in her carseat- she screamed. We played quietly at home- she screamed. We ate as a family- she screamed. We went outside- she screamed.

While this was unusual behavior for her, she seemed to be feeling fine, so we tried to talk through it with her. Nothing. Yesterday at 8:00pm when she was still screaming- nothing I did helped- I finally called the Pediatrician back. No physical symptoms (other than a lingering cough)- but I wanted to rule out anything physical before we assumed this was a behavioral phase even though I felt silly even calling him because it so obviously seemed to be a behavior thing.
 This morning we buckled back up and went back to the doctors....and it turns out that little miss Addison has pneumonia/possibly bronchitis. Her screaming was the only way she knew to communicate with us that something was off. #Guilt
After I published my post/rant yesterday, the day went downhill very fast, and I felt like I was being tested with what I stated so strongly. I thought that perhaps my next challenge was to deal with a child who has screaming tantrums- can't communicate why she's screaming- but is no longer happy to play and just- be. Screaming, screaming, screaming all the time. (I really thought I was going crazy after just three days of it)

Even after contemplating that as my future (and pulling out most of my hair), I still meant every word that I typed. Especially when I looked into Addison's eyes, watched her calm down as she listened to me talk to her and saw a person trying to reach out in her own way even though it wasn't my preferred method of communication. Because at the end of the day it isn't about me at all. And sometimes it takes a sick child to really reinforce that.

I will admit that I was relieved to hear that this was a physical something. Definitely much easier to deal with than a behavioral issue. (Assuming that Addison gets better soon!)
But I guess I've felt like a rather lousy/disconnected blogger lately because I haven't been able to reply back to your many sweet and helpful comments. I've been distracted with my post-workshop book edit (which is going really well in spite of everything else). And now that distraction has been overtaken by that of a sick child- my #1 priority.

Oh well. I will be back in full force soon....I think...I do appreciate each of your comments even if I can't reply back to each of them!

Meanwhile, tonight I am thankful for the silence of two sleeping babies. Not going to take that for granted anytime soon...

P.S. Winner of the Toys R Us Gift card is Samantha Petrie. Samantha- could you please email me? (dsmith0806@gmail.com)

Monday, July 30, 2012

To Samantha Brick



Clearly you have done some sort of half-hearted homework, gathering inaccurate statistics and emotional arguments to soothe your conscience should you need to dispose of a baby with Down syndrome. It's almost as if you have talked to a smooth-talking car salesman who has given you the pitch and completely won you over because you're interested in the color and style of the car instead of whether it actually runs or not.

I have a news flash for you. You aren't buying a car. Or a house. Or a designer bag. Or a vacation.

All of those things you can pick out and resell or trade back in in if it wasn't the product you thought it would be.

But what you're talking about here is a person.

"I actually think it would be selfish to HAVE that baby because of the impact on the local health services, the cost of raising that child and the support it would need." -Samantha Brick

I admire you for all you have to go through to become pregnant in the first place. Infertility struggles are not a laughing matter.


But please remember. You are creating a life, not putting in an order for French fries.

For you to openly say that you will most likely dispose of "it" if the tests came back positive for Down syndrome clearly shows that you completely misunderstand what being a mother is all about.

Some might think that motherhood is about having the baby that you see when you close your eyes, inhale baby powder and picture those pudgy hands wrapping around your neck. When you blink, you see that same baby as an adult- brilliant and highly successful.

It turns out, that is a lie that Hollywood tells us to sell movies.

Motherhood is about accepting whatever gift you have been given and loving that gift for the unique person that he/she is. Motherhood is about taking the cooing smiles AND the dirty diapers. Motherhood is about the days that you love life AND the days that you think you can't last another hour. Motherhood is about celebrating the developmental milestones that happen ahead of time AND the ones that are delayed. Motherhood is about reveling in the moment and refusing to set your sights on a specific future because you know that you can't control what is coming.

When you become a mother, you don't get to pick parts out of a Mr. Potato Head bucket and piece together the baby of your dreams. Motherhood doesn't involve a receipt for return purposes. When that baby tests positive for something that you deem a tragedy, you don't get to will that baby out of existence just because it's inconvenient to you or your family.

Motherhood by its very definition is inconvenient no matter how many chromosomes your baby has. You are the person who is supposed to love that baby more than anyone else.  Why is your love so shallow that you wouldn't even want your baby to have LIFE because of something that wasn't part of your sugar coated dream of motherhood?



So you recognize that raising a child with Down syndrome is hard work. But how does your brain then skip from there to saying that the baby deserves death? Why wouldn't you at least consider giving up your baby for adoption to a family who would be willing to put in the work?

Why wouldn't you give a simple chance at life to the baby that you worked so hard to get JUST BECAUSE "it's" not what you ordered?

This isn't a hamburger that's too cold. Or a pizza with the wrong toppings.

This is a baby. There's nothing you can do to guarantee what that baby will be like or what his/her future will look like. And to decide whether this baby should live or die merely because of number of chromosomes does't sound very fair to the baby. What's next? Male/female? Color of hair? In-womb personality tests?

If that's your attitude toward motherhood, I suggest you stop the IVF treatments and get a puppy. No, not a puppy- a pet rock. 

Because a baby isn't an accessory, but a life. And if you're already listing reasons why you would kill that life before it is even created, it seems to me that you don't understand the value of life enough to be trusted with the title of "mother".

...and add a dash of snark

Another round of me pretending that I'm funny and you being too polite to correct me (with a few scattered courtesy laughs)

(also known as: pictures from our weekend)
The next time my husband wants to take a "family outing" to Home Depot, I will now know that what he really means is that he needs someone to sit in the cart and hold his merchandise in place. #ChildLabor

Happy Monday.

Thursday, July 26, 2012

The Big Picture

"Of course she has Down syndrome. Any other immediate health concerns?"

She asked me, eyes twinkling with kindness, pen poised to write down my answer after the words "Down syndrome".

I thought hard and then sheepishly replied, "She's nearsighted....and that's it"

She looked surprised, but wrote down what I said, leaving half of a page dedicated for listing medical needs empty.

I remember the first time I met her. It was 1:00pm on March 12, 2010, the day we finally took our baby home from the hospital after a 5 week NICU stay.

We were led to a conference room where all of Addison's team would meet to discuss all of her health issues (there were many) and schedule her first year of doctor's appointments (so, so many).

She was there, giving me "coupons" to give the pharmacists so that we could get Addison's medications for free. Addison was on 5 (very expensive) daily medications. She kept asking me if I needed anything. If I had any concerns. If I was OK to take my baby home.

The list of Addison's health concerns handed around to the conference table full of strangers who all knew my daughter's name was:
1. Trisomy 21
2. Hypotonia
3. Feeding Difficulty
4. ASD
5. Pulmonary hypertension
6. Conjugated hyperbilirubinemia
7. Hepatosplenomegaly
8. Transient abnormal myelopoiesis
9. Anemia
10. Thrombocytopenia
11. Feeding by G-tube


It was overwhelming, scary and confusing. "I can't do this." I thought.


I nodded blindly towards whoever was talking as the room full of doctors each took a turn to speak. I listened without comprehension to their concerns and where they fit on the list. Nothing positive was spoken- only the many, many things that were wrong. There was no end in sight of the doctor's appointments. When someone mentioned adding in therapy I felt myself pushed over some invisible cliff- falling to who knows where.


After the meeting was over, we were handed the notes that one of the interns took, sent to Addison's room on the PICU floor, and told that we could leave.
The entire distance to the car, people gaped at us like we were stealing a baby because we were running out of the hospital, bells clanging on her stat machine because she couldn't breathe very well in the wagon. It now seems like a distant memory, but at the time I didn't know what normal would ever feel like again. On that day I wasn't sure if I would ever have a child not attached to oxygen with a heart surgery looming. I thought that day was the beginning of the end because none of it made sense to me.


But today? Today the only medical concern I could think to list was "nearsightedness".


As I stared at the social worker who was filling out all the paperwork for our PCA hours reapplication, I saw the last two and a half years very clearly. And I saw- a miracle.


As I did each day, doctor's appointment to appointment; medicine application to g-tube worries; therapy to evaluations, I couldn't see the big picture because I was so busy in the moment.


Today I saw that big picture, noting the swirls and dashes of the bright colors intermingled with the dark foreboding ones. There was action combined with the even more-difficult-to-achieve stillness. There were question marks tangled with exclamation points. Each layer was brushed by tears of sorrow and joy.


When I first met her, I was a new mother, full of doubt and fear. I wasn't sure if I would still be a mother the next day- or hour.


Now as I stared at her fiddling with her straightened blonde hair with one hand, finishing the application with the other, I was overwhelmed in a completely different way. I have two healthy, robust toddlers who fill my house full of mess, laughter, and dirty diapers.


God is good. And I am beyond thankful for the big picture reminder. This morning I was drowning in a new work of art because I couldn't see past the moment. Just because this current painting isn't yet finished doesn't mean that there isn't a bigger picture that I will someday look back and see that today's drama not only fits inside, but is necessary for the beauty of the big picture to have its full effect.

Wednesday, July 25, 2012

Coming Back Home

I tend to be a homebody. I love the occasional vacation, and yes, I do complain when I've only seen the four walls of my house for weeks on end when the kids are sick. But generally speaking, I like to stay at home.

I'm also an introvert. But some things go without saying.

On Saturday when I arrived home, I walked eagerly into the front door of my house. These walls that I painted the neutral beige have seen me weep with a broken heart. They've witnessed my happiest moments. My children's yogurt handprints decorate them 90% of the time. They know me, and I know them in every little detail. Yet, as I stepped through that door, everything seemed different.

Was it because I was different? A week had gone by with activity I hadn't been a part of. The yogurt handprints were wiped off by someone else. An entirely different person leaned against them in exhausted frustration after the kids were finally in bed. The walls witnessed other people's happiness and sorrow.

I felt like a stranger.

"Hello, I'm Deanna" I wanted to say. I wanted to wrap myself back up in the familiar, but when I grabbed at it, it crumbled in my fingers.

Shy smiles from my children and chubby arms reaching for me helped. I looked down at the babies in my arms and they were bigger- older by an entire week. I felt an acute sense of loss.

Sometimes it's necessary to leave. Sometimes a break is what the doctor ordered. But then coming back home to a sparklingly clean house and happy babies who didn't entirely remember who I was felt like I was a pig that had been given a bubble jacuzzi bath and then was dumped back off at the sty that had been scrubbed down to perfection. What did I need to do?

Roll around in the mud. Feel the sticky faces kiss mine. Change the oh-my-word diapers and then scrub my hands knowing the smell won't leave for a long time. Make the bottles and prepare the food that Addison won't touch but Carter will lick both bowls clean.

I needed to put away the folded laundry that someone else graciously washed, unpack my suitcase, make some food for my husband who hates to be a bachelor even for just a week, reacquaint myself with what's in the kitchen and the new organizational system that someone else so sweetly arranged for me.

And then when the unfamiliar house had that slightly mussed look that is sadly my housekeeping signature, something called to me back in the bedroom.

My bed and my pillow. It looked like my husband had slept in the middle of the bed with all the sheets and covers knotted together with my pillow tossed over the side. Miss me much?

As I lay down on the mattress, something finally felt familiar. I curled up and felt myself drift off after a long night of flying and knew that I was home.

My last thought before sleep was that I didn't want to leave again for a long, long time.

Tuesday, July 24, 2012

Meeting Goals In a Big Way

Monday morning:
Yesterday morning we had Addison's 6 month evaluation. We do these every 6 months (duh) with all of her therapists and case workers who facilitate Addison's care. We go over the goals we made for her at the last appointment and check to see how she's doing in her therapy appointments. Sometimes it's easy to lose the big picture because we're focused on the week to week, so these meetings can be good (and rather overwhelming at times).

I was floored when one of our goals from January was "Addison will be able to walk two to three steps consecutively without holding on to anything" and another "Addison will be able to pull herself to a standing position from the ground with no help 50% of the time"

As these goals were read, Addison was running circles around the living room, tearing papers from therapists hands and checking out the bead design on different sandals, and then taking off to different rooms to retrieve better toys. It's hard to believe that six months ago I was afraid she wouldn't be able to take THREE STEPS in a row because of how effortlessly she gets around now. Once Addison learns a new skill, it's difficult to look back and remember her NOT doing it at some point. Yes, it might take her a bit longer to get there, but once she's there, she does it as well as anyone else!

After ten minutes, Addison walked over to the door, looked over her shoulder and signed

"Door"

She turned to the group of therapist and signed

"Thank you"

and then walked toward them signing

"Bye-bye"

just as we got to the goal "Addison will be able to communicate her wants and needs through a variety of signs and speech"

Um, yeah.

And some of the team only sees her every six months, so you have to remember that only a few meetings ago one our goals was "Addison will be able to breathe without the aide of her nasal cannula 100% of the time"

Goal Exceeded.
The only goal that we set 6 months ago that Addison still struggles with is using a sippy cup, straw, or a regular cup. Sister loves her bottle and doesn't want to say goodbye to it anytime soon. Of all of our goals for her, this is the one that I'm the most OK with her not meeting. I guess because I have two babies on bottles? I don't know, but I'm hoping that I will be able to wean them both off at the same time. (fingers crossed) This of course means that Addison MUST start using a cup of some sort. hmmmmm. Our next step is to buy her a Reflo cup. Anyone else use these?

The thing that completely freaked me out was discussion of her transition from in-home therapy to a EEE program in a local preschool come February (when she turns 3). She will have an IEP and possibly an aide with her during class.

The thought of her going to (part-time) preschool doesn't scare me. But the thought of her being around other children her age- opening the door for possible rejection and activities that she doesn't understand? That terrifies me. 

We'll be meeting with the head of the preschool in September and possibly visit a class or two to see what we're getting ourselves into.
Meanwhile? We're taking a short therapy break in August so we can use those mornings to try something new- like Dance Class and Gymnastics stuff. At first I worried about the break being a bad thing, but they said that if she makes any regression in behavior, we can document it to prove to the EEE program that Addison needs services throughout the entire summer next summer. I hadn't thought of it that way before as we really haven't had a break for more than a week since we started (when Addison was 6 weeks old)

Of course immediately after the appointment she did this:
 and signed "bed"
and then slept from 11-3:30 and then went to the doctor for a temperature of 101.9 and then slept 15 hours last night....so apparently the thought of preschool freaks her out too. Thankfully we have a lot of time to adjust.

(Please feel better soon, Addison!)

Don't forget to enter the Baby Bash Giveaway!

Saturday, July 21, 2012

that moment of AH-HA

I can't even begin to tell you what your encouragement has meant to me. I'm not going to lie- I was quite down after the agent meeting the other day. I guess I thought that a face to face meeting would be different than sending a query email.

Turns out that getting rejected in person is like having the agent delete the email in front of you and then slap you. (no, she didn't slap me...that's just what it felt like)

I wanted to reply back to each of your comments, but my wi-fi at the conference was spotty at best.

Thank.you.

While I was driving the three hours back to the airport last night, I was so confused.

I learned so much this past week. But I didn't feel like I had the next step for my book handed to me on a golden platter. I sacrificed so much to go to this conference, and I thought that it would bear more immediate fruit for my book.

Driving three hours in complete silence gave me a long time to think. And pray.

About an hour into the drive, I was analyzing for the billionth time the meeting with the agent vs the workshop of my book vs the individual tutoring with my teacher.

While passing field of dirt on the left and breathtaking rock formation on the right, something just clicked in my mind. All of the pieces from the different parts of the conference melded together to form comprehension for me as a writer. Ideas started coming to me- things I needed to change- ways I can make my book so much better- the reason why the meeting with the agent crashed and burned.

When I got to the airport, I sat with my notebook and wrote down every idea that flooded into my mind during that drive. Idea spawned idea and by the time I landed in Vermont (after flying all night) I knew EXACTLY what I needed to do next on my book.

It's no longer a mystery, and I am beyond encouraged and excited about the next few months as I apply my new knowledge to my work of passion- No Guarantees.

It won't be easy, and I still have many hours to put in. But I'm no longer in the dark.

Hope has returned, and I am thankful. This trip was hard, but it was exactly what I needed exactly when I needed it.

And now? I am home with  my twinsies. I missed them so much, and they grew up so much while I was away. I am so thankful for those who sacrificed as well to take such excellent care of them while I was gone. thank you, thank you, THANK YOU.

We will be back to regularly scheduled programing soon....there's NO PLACE LIKE HOME!!!!

Thursday, July 19, 2012

To Quit or Not To Quit

Success is a funny thing. Sometimes it explodes in your face because you're in the right place at the right time. Sometimes you shuffle towards it slowly like your ankles are bound together while running a 5K. Sometimes it just- isn't.

I've been here in New Mexico all week (anyone miss me?) dedicating myself toward becoming a better writer and opening new doors into the publishing world for my novel- No Guarantees. 

I didn't want to come so far away from home. I didn't want to leave my kids (I MISS THEM!)

But somehow I knew that this trip was necessary for me- a challenge that I had to complete before I could go back home to my first career- mothering. So many things fell into place to make this trip possible. Enough things for me to know this is where I need to be.

Well tomorrow I am finished my weekly journey. Tomorrow I finish my last class and board the red-eye back to Vermont (I miss grass).

And I'll be honest with you- this trip didn't go at all like I thought it would.

I thought that my writing instructor would read my work and laugh in my face telling me how horrible it was. She didn't. She said my book is wonderful- that I am an excellent writer- that I need to keep writing and working because she can't wait to buy a finished copy of my book. (And surprisingly enough- the rest of my class said the same thing)

I thought that the agent consult would give me good tips on securing an agent- writing a query letter- maybe even how to be a future client of hers after I applied my workshop knowledge to my manuscript and sent her a revised copy. She didn't. She didn't like my book- the overall pro-life message driving the book bothered her, and in her opinion made it unpublishable.

Unpublishable. I can't think of any word that has crushed my spirit faster.

My writing instructor says not to listen. That it is a fabulous book- that is one person's opinion. All I need to do is find the one person who sees the potential that is there. Obviously this one agent was not that person.

My writing teacher, the successful novelist, said to keep going.

I want to quit. (yes, I almost deleted my blog today as well. That's how much of a failure I felt in that moment)

My teacher said I'm not a failure. I'm just getting started. Why do the two often feel like the same thing?

I thought that this week would teach me how to be a successful author, but what I really learned was that I already have what it takes. I just have to push through those feelings of inadequacy and do what I know is right- writing.

I thought that I would feel out of place in the middle of writers. But I learned that I can hold my own.

I thought that someone would tell me definitively that I should keep going or quit.

Turns out I had people tell me both of those things. So now it comes down to what I really believe. What my vision is. What feels right.

I sincerely believe that I have a novel that will not only be an interesting read- but make a difference in how parenting a child with special needs is viewed. Do I have more work to do? Without a doubt. Is my book important enough to keep working on? I firmly believe so. Can it be published and sell well? I really do think so.

In class, writing a novel was compared to pushing a bean across a warehouse floor with your nose. I keep looking up and thinking that the wall is closer than it actually is. It's time to buckle down and just keep pushing that tiny bean little by little. I will eventually get there even though this hasn't been an "explode in your face" success publishing story.

But that's OK, because when you have something important to say, you keep working as long as you need to to find that success. Even when it feels like the warehouse wall has expanded across the Grand Canyon and quitting seems like the easier option.

I'm not going to quit. Because Addison-who has to work hard at everything-doesn't quit trying to do those things she REALLY feels is important. And I learned from the best.


Friday, July 13, 2012

Liar, Liar Salad Dressing Buyer




"Are they twins?"

changed over a few months to:

"They must be twins"

to yet again:

"Awww, twins!"

My response is always the same. "No, they're 19 months apart"

Which used to elicit a smile and:

"Well, they're so cute!"

and then changed to:

"Oh wow, they sure do look a lot a like."

to yet again: 

"Are you sure?"
Today for the first time, I gave in to my weaker side.

"Oh twins are so hard, aren't they?"  A sympathetic mom asked me at Costco today

I turned quickly, not sure how to answer.

"I have twin ten years olds, and I promise. It does get better" She continued.

I had a split second to respond and went with

"Yes, yes it is really hard."

Which satisfied her because she then walked quickly away. It was simple, saved me the "ARE YOU SURE?" question (which is better than the "Do you know how that happened?" question that I used to get when it was just obvious that they were close in age...but still...)

Then four more people asked me as we wandered through the store, and it was easy yes, but I felt guilty.
So when we arrived at Hannaford and an older lady approached me with 

"Awww, twins!"

My conscience made me say "Well, actually they're 19 months apart"

Which caused her to lean down REALLY close to the race car cart and take a closer look.

"Is that your first?"

that?

"She is my first and he is my second."

She then whispered.

"Does she- does she have Down syndrome?" like she was saying a dirty word.

"Yes, yes she does." I proudly answered.

"But- she's so cute!" The lady said in amazement.

"Yes, she is perfect. We love her very much."

I thought the conversation was over, and I made a grab for the Ranch dressing and an escape, but I had no such luck.

She scooted her cart over by mine and settled in for a long conversation. uh-oh

"When I was raising my kids, I knew a 5 year old with Down syndrome, and she was surprisingly smart."

"I believe it. Down syndrome is a very misunderstood label." I replied.

She leaned in my face with a look of judgement.

"Did you know that all Down syndrome people look exactly the same?"

wow.

"Well, actually each person with Down syndrome is unique-just like all the other people. And while there might be similar features, individuals with Down syndrome are definitely not all the same." I said as gently as possible.

"And furthermore" she continued, ignoring me "If you wait until you're THIRTY to have a baby (she spat it out like another dirty word) that baby will mostly likely have Down syndrome. Better to have babies young."

She glared at me.

I was speechless but finally sputtered out a response.

"Well, I'm not thirty. Women of all ages can have a child with Down syndrome." I weakly replied. (Seriously, what do you say to that?)

"And I heard" (there's more?) "They actually have a test now that you can take WHILE YOU'RE PREGNANT to predict that sort of thing. Did you know that?" She asked me pointedly.

"Yes, yes I did."  I held my head high. I wasn't ashamed of Addison at all. I continued "Down syndrome has brought wonderful things into our life, and we love our little girl very much. Down syndrome is not a bad thing. We wouldn't trade Addison for any other little girl."

"Well, your little boy is very handsome."  She talked again, ignoring me. "He'll be good for her. They need all the help they can get, but apparently they can be cute."

"Yes, THEY are both very cute and THEY both need a lot of help." (I ignored that she was talking about individuals with Down syndrome and referred to BOTH of my children)

"I hear that often times their parents just abandon them on the side of the road because they just can't take the hard work anymore." She said.

"Well, I hear that of babies in general. Some people just aren't ready to be parents because parenting in and of itself is hard." I replied holding back in a big way- keeping it polite.
She nodded in surprise and then launched into a monologue about the 5 kids that she raised and her divorce 20 years ago.

Trapped in the salad dressing aisle with two wiggly babies launching themselves out of the cart and the recipient of this lady's life story, I decided that sometimes lying might not be the worst thing in the world....

She finally let me go with the admonition to "BE STRONG" for the hard life I have in front of me.

It's those types of stereotypes that make me angry...because she didn't listen to a word I said...or REALLY looked at Addison. And no matter how badly I wanted to, I wasn't going to respond unkindly because whats the point? So in my mind, the entire conversation I rewound back to that moment before the conversation began where I changed my answer to:

"Yup, twins." and then seamlessly moved on to the rest of my shopping in peace. (well, as much peace as you can have while shopping with twins anyway...) 




Thursday, July 12, 2012

Next Up On The Diving Board- Mommy

Thank you for all of your encouraging, supportive comments after my day yesterday (which only got worse, btw...thank goodness THAT day is over.) I can't even tell you how much I appreciate all of you taking the time to let me know that I'm not alone in having days like that! Seriously. Thank you. (I couldn't take the time to comment on all of your comments because Carter was on watching lock down)
I think I've just been completely caught off guard by Carter's huge explosion of mobility. Addison never had an explosion. It was one tiny shuffle turned step turned ten months of practicing turned walking.

She has always been so cautious with her body- afraid of pain? I don't know. But she practices something for a long time before gingerly going all the way with the motion (such as walking).

Carter throws himself wholeheartedly into whatever he wants to do (such as dive into the bathtub and climb on top of the picnic table or breaking my favorite bracelet and then trying to eat all the beads) with no thought as to how it might physically end.

Carter:
"I want to stand in the bathtub and talk into the mirrors"
next logical thought
"Dive in"

Addison
"I want to stand in the bathtub and talk into the mirrors"
next logical thought
"I'm going to stand next to the bathtub and whine, signing 'bath' over and over again until someone puts me in."

Is the cautious factor the same for all typical vs kids with Down syndrome (or boy vs girl)? I have no idea. I just know the two unique individuals in my care and I'm not sure that I will survive Carter's next five years.

The boy is a beast and has no fear of what might happen as he pulls his latest stunt.

Up until now with my "writing career" (I say that in quotes, because, well...you know) I have been mimicking Addison's methodology toward mobility.

Over two years ago March I started this blog. Two years ago July 10th (yes, after Jenna and Tyler's wedding...my friend Karen and I talked about it all day) (-: I came home after playing at a beautiful wedding, planted myself on my couch and wrote the first chapter of my novel. (Which has now been re-written ten MILLION times)

The last two years have then involved shuffling and months of practice before trying the next step.

My mother read my first manuscript and she LOVED IT.

YIPPEEEEE ready for publication!

Sometimes I want to go back to a past version of myself and give her a smack.

"WAKE UP." I would tell her. "You have SO MUCH to learn"

I would revise again and again and again and again and again (repeat until your head starts to spin).

Friends who I love very much read it, gave me comments and then the revising started all over again. Just when I was about to give up, another door would open for opportunity, learning, and encouragement that yes, I needed to be doing this. (and let's be honest, I  needed all the many revisions as I learned to really write)

This has been a long process, and yet still it's not over.

After two years of shuffling and shyly whispering that I'm working on this project, I'm taking a head first dive into an empty bathtub.

Sunday I head out to my first Writer's Conference. I'm taking an intense week long class to learn as much as I can and do another polish on my manuscript. I'm meeting with an agent to discuss publication possibilities. I'm learning the ropes, immersing myself in the world of writing without a blog to hide behind.

To be honest- I am terrified.

I'm afraid professionals will tell me my book doesn't have what it takes. I'm afraid that they'll tell me while I write a semi-ok blog, my writing isn't novel material. I'm afraid that I'll get so intimidated by how far I still have to go that I'll want to give up.

I'm afraid that I'll have worked the past two years (and am leaving my kids for a week) for nothing.

I'm afraid that I'll have to bury my novel somewhere in the basement along with my clarinet etude books and old "woodwind solo" trophies.

I don't want this to be over. But I'm afraid it will be.

And yet, pulling a Carter, I dive headfirst into the tub not thinking about the pain.

I'm taking the biggest risk I've ever taken in hopes to open new doors for my writing.

Terrified is definitely the best word to describe it. (and would explain why my tension this week is going to land me in therapy...hmmmm massage therapy??? I apologize to everyone who knows me IRL.)

I would appreciate prayers. And could someone please throw a soft pillow at the bottom of that empty tub???

Yes, I will blog during my trip....unless I'm lying unconscious on the blood soaked pages of my book.....

Wednesday, July 11, 2012

"Hello? We'd Like To Order A New Mommy."

I sensed it before I heard it. 

Something wasn't right. 

I checked on the children one minute earlier. They were playing happily together. Carter likes to follow Addison around the house like a little puppy, and they go peacefully from one play station to the next parallel playing together. (I especially encourage this the day after our therapies for the week are over. Independent play is just as important as therapy in my opinion) 

A minute earlier when I peeked in at them, they were both standing at the kitchen in Addison's room mixing up some imagination flavored air. Now? I could still hear Carter babbling, but something was off... 

The second it clicked in my mind I shot away from my housework and ran as fast as my little legs would carry me. His "Ba-ba ba-ba"s were echoing and that could only mean one thing.

He was in the bathroom.

And not just playing peacefully on the bathroom floor, he was standing at the top of these stairs leaning into the bathtub.
I ran the distance between us like my life depended on it and shouted "NO CARTER" but I was too late.

It all happened in slow motion in front of me.

One chubby body dove head first into the bathtub with the silence of unexpected victory from his red lips.
I got to him just as the cries started. I scooped him up carefully and laid his head with the growing forehead egg against my chest and wanted to bawl.

I froze in the horror of moment. Where was my phone?

Holding my wailing baby close, I searched for it, finally finding it and dialing our Pediatrician with shaking fingers.

Where was Addison? Happily playing alone in the living room? She must have opened the door to the bathroom because I remember shutting it...was she trying to distract her shadow with the allure of the stairs?

Just then Carter vomited all over the floor.

When a voice came on the other end, I asked if I could please speak to a nurse and it was an emergency.

They then made me hold for eight minutes. EIGHT MINUTES.

I know I was a little short with the nurse when she finally came on the other end, but seriously I was scared and now ticked off that they didn't care that I had an emergency.

While I was on the phone, I briefly set Carter down because I needed to get dressed. After another short minute later I realized that he had disappeared yet again. Where was he? Climbing BACK up the bathtub stairs for another free fall. Are you kidding me? 


I then grabbed him up tight and put him in his crib to keep him from harm's way while I finished getting dressed and dressed Addison.

He wailed and wailed that I would end his fun in such an ungracious manner.

My head started to pound for him.

Long story short, we ran to the Pediatrician's office after they said we could come in, and we were seen right away.

Apparently Carter is just fine and the doctor was more impressed by his climbing prowess than anything.

Apparently my son has an inclination for danger and injury but has a tough little body to withstand his curious nature.

And for those of you who have read my novel, the irony of this situation is not lost on me...

And for those of you calling social services on me, I DO keep the bathroom door shut...but add in Addison's new skill of opening doors followed by her little puppy and you have a PROBLEM. 

This is why I am now blocking off the hallway, bathroom and bedrooms during independent play time. (and I have been doing that all week, but opened it up today so they could play in Addison's kitchen. groan.)

I am shaking and feeling nauseous. Both children are now happily sleeping after our impromptu morning outing.

Today I feel like the worst mother in the world. And I'm not saying that to get assurances that you perceive differently.

It has just been a horrible morning in which my son decided to start empty bathtub "dumpster diving" while my back was turned for a second.

Failure.

They say that tomorrow is a new day with no mistakes but THIS DAY HAS JUST STARTED and my mistake margin is pretty awful.

Please excuse me while I marinate in shame.

This isn't my first "horrible mother" day, and I use them to think through every way I could do better for my kids. Today's mental conversation is not a pretty one. It's hard to do everything right all the time. It's hard to do everything right even 20% of the time, and sometimes things like this happen to cause some reevaluation. At least for me anyway.

I am so thankful that he is OK(frankly I'm amazed that he wasn't more hurt...that is a LONG fall). The safety of my children are MY responsibility and today I let that slip through the cracks.

Time for a new plan.

and more coffee.

Tuesday, July 10, 2012

A Little Bit About Therapy

I talk a lot about Addison's therapies here on the blog- sometimes in passing, sometimes to tell what exciting thing happened, sometimes just because it's a big part of our life so stories can't be told without mentioning it.

This purpose of this post is to explain why we spend so much time in therapies, and what we do with that time. (In case you have been wondering)

When you have a baby with Down syndrome, the state offers a program called Early Intervention. The hope of these therapies is to teach early on those things that will benefit that individual's development and growth in a positive way the rest of his/her life.

Each state will pay for differing amounts of EI. Some will offer one therapist a month. Some perhaps every other week. Some states make you drive to the appointments, others send the therapists to your house.

I know that not every family with a child with Down syndrome decides to take advantage of these programs, and (in my humble opinion) I think it depends on some sort of combination of the following factors:

1. The quality and helpfulness of the therapist you're assigned.
2. Location of the therapy
3. Price of the therapy (how much will your EI pay for?)
4. How much social interaction your child is already getting with older siblings or daycare
5. The background of the mother. Has she raised other typically developing children? Does she had a  history in education? Or special education?
6. Physical concerns (for example, when Addison had her g-tube, you can bet that the OT was my bestie as we taught Addison to eat for herself)

That's not an official list, just my thoughts.

The truth is, we see four therapists a week, and there are many that choose not to see any therapists at all. I'm not criticizing their choice or defending mine. This is simply what is right for my daughter. I'm not going to be arrogant enough to say what is right for other people's children. That's completely not up to me. The only choice here is the one that I make for my family. There are so many different factors at stake that it makes sense that different families would make different choices.

Do I wish that I had the confidence to say that I myself can teach my daughter the things that the four professionals bring to her appointments each week? Of course I do.

But I don't have that confidence or skill level, so I take advantage of every bit of help that is offered.

And I don't think that makes me a bad mother. Or an insecure mother. Or a mother that doesn't truly understand disability.

It just makes me a mother who is doing the best she knows how, using the resources at her disposal to raise her daughter to reach her full potential.

I'll admit, as a brand new mother at first the therapists made me feel inferior (but NOTHING compared to the NICU nurses). Starting PT at 6 weeks was daunting (especially when we came home from the NICU at 5 weeks). But as I got to know the therapists, grew in the ability to speak up for what I thought was best for Addison, and eventually got a team on board that I loved- it has been a golden relationship.

They respect what I think and say, and they suggest ideas based on their expertise- listen to what I think- and then adjust their suggestions and activities. They also give me connections to new playgroups, funding to buy Addison things (such as her iPad), reimbursement for such things as travel and hotel for Addison's surgeries, and an easy transition into her Preschool (coming up!).

I also found that I couldn't handle the four separate appointments, so I scheduled them piggy back.

Monday at 9am the Behavioral Educator arrives
     We discuss strategies for Addison's behavior with her friends, work on her sign language, and talk through her daily routines. The BE helps me understand setting Addison (and myself) up for  success in such areas as her asking for specific help or me teaching her specific behaviors.
9:30 the Speech Therapist joins us
      The time is then dedicated to Addison's speech and signings using Prompts, songs (Addison's favorite!) and lots of object recognition. Addison didn't make her first little peep until we started with our SP. She has truly worked wonders with Addison. Because Addison really likes her SP, she will attempt new words and such that she won't do for anyone else. Combined with the BE, it's a fun hour and a half focused on playing with and teaching Addison.

Tuesday at 9 am the Occupational Therapist arrives
       We work on self feeding, stacking blocks (and duplos), coloring, isolating finger use, playing with toys purposefully.
9:30 the Physical Therapist joins us
       When then combine OT exercises with our PT. Standing to turn the pages of a book, climbing up on the picnic table to stack blocks, walking around while rocking the baby doll. And then the hard core PT starts with walking on different surfaces, navigating obstacles, climbing down the front steps safely, walking long distances outside.

Each therapist stays for an hour (at least), so each appointment includes a half hour of joint therapy and a half hour from each individual.

I'm not telling you out schedule to pat myself on the back because

1. All of these therapies are paid for by our EI program
2. They all come to my house and have agreed to my piggy back schedule (in fact, they've started using it with other families because they like the collaborative visits so much)
3. We have the best therapists that Addison LOVES and she learns new things every week while they're here.
4. Addison doesn't have older siblings to learn from.
5. I don't feel comfortable in my own knowledge and education background (High School Music Teacher doesn't exactly qualify me as a therapist myself) to shrug away the offered help and say I can do it on my own.

I have friends who choose differently because their options, choices and situations are different. I in NO WAY judge or criticize someone who makes a different choice than I do. In fact, I completely admire their choice because it's the right one for them and I hope someday to have more confidence as a mother to do more of this type of thing myself because let's face it- therapy is inconvenient.

But I'm honest enough to admit that because of our situation, therapy is our best option. I'm not in a place to say that therapy is useless to me and I can do it all myself, and I'm OK with that.

I am just doing the best I know for my daughter just like we all do.

In the world of therapy vs no therapy, this means different choices for different families, but isn't it that way for every choice of parenthood?


Sunday, July 8, 2012

Enjoying the Moment for What It Isn't

He was supposed to be asleep, but he wasn't.

His specialty whine/cry combo lifted from his white crib, down the hall, and into the Dining Room where I sat with my computer.

Something in his cry sounded more urgent than usual, so I went to investigate.

He was standing in his crib, smiling with his face framed by hair so long it was starting to flip out at the ends. His eight pearly whites glistened in his smile and I couldn't resist myself.

I knelt down so I was eye level with him and asked what was wrong. He laughed girlishly in my face and tried to grab my nose with nails that grow too fast.

Checking his diaper I saw the problem, unfortunately resembling all too closely the dark chocolate covered pomegranates I had been snacking on minutes before.
I changed him, laughing and tickling his large belly. He stared at me solemnly and when I caught his eye again, he very purposefully said

"Ba-ba."

"What?" I asked him quickly.

He said it again.

"Ba-ba Ba-ba Ba-ba"

In the cutest little voice. I could hear that same timbre, deepened slightly, telling me of a fight out on the playground, his first girlfriend's name, and where he wanted to go to college.
A few days ago I realized that I was so concentrated on Addison's speech therapy that I had neglected to work specifically with Carter, and he wasn't saying any syllables consistently. Yes, he got the book reading and the conversations, but I wasn't in his face, bug-eyed rapping "Ba-bas, Ma-mas, and Da-das" ending in "the greatest of these is Mama" with a smile and a laugh.

So I did it. twice. Last week.

And now he was saying it on his own. I called Aaron in, thinking I had just imagined it.

"Carter, do you have something to tell your Daddy?"

"Ba-ba ba-ba ba-ba" His voice rose and fell as he deliciously spoke once again, making intense eye contact and gesturing with those pudgy hands.

That voice. Those hands.

I was proud, excited, thrilled, amazed, confused.
It took so long for Addison to 1. Repeat a syllable 2. Do it when we asked. Her in-the-face-raps included four therapists, a PCA, and a very persistent MAMA.  And yet it took years for her to do what we worked on twice with Carter.

And yet, I wasn't sad. I thought I would be. 

It was the same as when he started crawling one week, pulling up the next, cruising the next, independently standing the next, and he now is simply days away from walking if he would so choose. Pretty sure Addison was 27 months old with orthotics and two years of physical therapy under her belted feet before that happened for her.

Why wasn't I sad? 

It is so different for the two of them. She has to work so hard. He learns things quickly. She gets so much help. He has one distracted mama. 
Does Carter remind me of everything that I lost because of Addison's diagnosis? Does his quick learning style point out the obvious delay in hers?

I thought that the answer to those questions would be yes- one year ago when I was large, pregnant and scared as to what parenting a "typical" child might include.

But, surprisingly- no. 
They are different. Oh so different. One is my favorite ice cream and one is my favorite cake that I love equally and can't possibly choose between, so I pile high the ice cream ON the cake and enjoy the different textures and flavors without stopping to think which is better. (and then I work out because let's face it- children make us fat...well, me at least)

Different, not good and bad. Different, not fast and slow. Different, not better and lesser. Just simply, different.

So as my son conversed easily with me in cheerful tones of "ba-ba" and my daughter was asleep in the next room, preparing for a Monday morning of celebrating the smallest of victories with her speech therapist, I accepted the moment for what it was.

Wonderful, exciting, a first for my little boy,

and I rejected what it was not- a comparison.

Because crumbly chocolate cake with thick fudge frosting and smooth, cold, silky ice cream with those same fudge chunks can't possibly be compared.
Just enjoyed, in all of their differences.

Friday, July 6, 2012

Giveaway

It's strange. I thought that a week away without my kids would allow me to revert back to who I was three and a half years ago before I became pregnant with Addison. Lots of energy, a drive to work work work, not a care in the world except what I had come there to do.

Turns out, you can't go back in time and be the person you used to be before motherhood. Yes, I slept through each night, went through the day without sticky fingers patting down whatever I was wearing (I'm not gonna lie- that was kind of nice), and had extra time to work on my book. But for some reason, I felt strangely empty.

Maybe it's the age that my two are at- very much needing me for everything. Being suddenly cut off from being the one that they depended on, I lost my usual drive to work and felt my inspiration slip away.

While standing in the middle of crisis with toddlers flying orbits around my head and crumbs underneath my feet, my mind is overflowing with words- long words, short words, funny words, serious words. While sitting in a quiet hotel room with only my friend the computer, my mind was a blank.

Motherhood has changed me. I knew that before this trip, but I didn't realize how much I guess. I can never go back and be the person I was before welcoming the little people into my life.


In honor of the inspiration of motherhood and to thank you for being completely awesome these past few days...

EANFE (Everything and Nothing From Essex) is giving away a $25 gift card to Toys R Us

 #1 is a requirement to enter, but then you can get additional entries by doing any of the other options:
1. Follow EANFE in some way-email, blogger, Facebook...etc (see the buttons on the top right of this page)
2. Share this giveaway-twitter, Facebook...etc (you get an entry for each share)
3. Tell us where you're finding inspiration today

Please leave a comment for each way you are entering the giveaway, and next Monday (July 30th) one commenter will randomly be chosen to win. The giveaway will close at 12pm EST.
aaaaaand there's more. This giveaway is a part of a Baby Bash Giveaway Blog Hop, so even if you don't win this $25 gift card, there are lots more prizes to win on other blogs. (-:
Bloggers Ready for another great giveaway hop? Join the Bloggers Giving Back Baby Bash hosted by Makobi Scribe and MomVantage with the grand prize as a Diaper Cake from Diaper Cake Walk. Enter the grand prize giveaway here. The idea of this hop was to give back to the community and donate the items that bloggers received to review.