Wednesday, June 27, 2012

Writing Prompt: New Beginnings

0 What are your thoughts?
In light of my new writer website, the writing prompt for this week is New Beginnings. If you blog, I do hope you do consider joining the writing prompt. Just write a blog post about new beginnings (limit the word count to 500 words) read the post that linked before you, and make sure you link back to THIS POST.

You have until Friday, hope you join in!

Tuesday, June 26, 2012

Cerebral Palsy - And Adoption Story

6 What are your thoughts?
“I hope to adopt someday."

The sentiment was real, yet my idea of adoption was romanticized and I lacked a real understanding of adoption.  I pictured bringing a shy, malnourished, lonely child to my home who would transform into a healthy and happy little person because of the love of our family.

I must confess that when we adopted a child with cerebral palsy I also had unrealistic expectations of the changes we would see in her mobility. I mistakenly thought that she would be taking independent steps as soon as six months after bringing her home due to weekly physical therapy, stretching, and the love of our family. I saw other kids that had been adopted accomplish such things, and surely, our daughter would too.

What I did not understand about adoption, and more specifically, the adoption of a child with special needs, was that we were dealing with more than the emotional aspect of a neglected child, we were also dealing with a disability that we had never lived with before, and the disability was hard. We stepped into a world of wheelchairs, MRIs, therapy, and countless doctor appointments. We thought we were ready, that it would be easy since we had a biological daughter with Down syndrome, yet, we felt challenged and stretched and often times wondered if we had made a mistake. 

To continue reading CLICK HERE. My article is published at specialneeds.com

Monday, June 25, 2012

Bedtime Routine

5 What are your thoughts?
We have been working on our charts and routines. Nichole is very visual (as so are most small children) and she especially likes pictures of things that are familiar to her. As we work on making our chart, we decided to take our own pictures.

So here is our bedtime routine in pictures for the girls that cannot read yet and because pictures are fun!

1. Eat vitamins

2. Pick up play-room

3. Put jamies on

4. Put dirty clothes in laundry basket

5. Go potty

6. Wash hands

7. Brush teeth

 8. Get in bed



Once in bed, I read the girls a story and we pray together.

Note: When I did this with Ellie a few years back it really worked! So much so that she has actually stuck to the bedtime routine even after I stopped reinforcing it. Routines really work with kids! Especially when there are pictures and they participate at creating them.

If you are wondering what this is about, it is a result of wanting to live intentionally, you can go back and read more about that.

I am curious, what is the bedtime routine like at your house?

Friday, June 22, 2012

Taking a Risk

6 What are your thoughts?
My writer website is up! I would love for you to check it out, ellenstumbo.com. I have been working on it for a while, and I wanted it to be perfect. The thing is, the more I worked on it the more I changed things and the more I was writing and re-writing. The site is now live!

I am a little nervous, this is a risk I am taking. I could flop, and not do as well as I hope to do with my writing. But it is something that I love to do, and yes, someday I do hope to write books!

It also feels good to have something to look forward to, a "job" where I can do something I love and contribute to my family. Are you a stay-at-home mom? Do you find yourself trying to find creative ways to be a "woman" and not just a mom. Oh how I love being a mom, but I also need to do something else besides laundry, dishes, cooking, cleaning, and potty training. Oh I know, most of my writing does evolve around being a mom, what can I say, I really do love that job!

Would you do me a favor? Would you stop by my site and let me know what you think? I am learning as I go, and I really would love to hear your thoughts!

Thanks for journeying with me!

And do tell me, as a stay at home mom, what re ways you find yourself being creative?

(Linking up with Gypsy mama for 5 minute Friday, where you write for 5 minutes, no editing, just write. Today's theme is RISK, which was timely considering today is the day I launched my site)

Tuesday, June 19, 2012

Photo Dump My Style

8 What are your thoughts?
I know there is a right way to share a "photo dump" post, but this is my style of a photo dump, since I have not done a very good job of sharing pictures lately.

My little sister just graduated from high school. Ellie adores her auntie Luisa, and whenever we spend time with family, Ellie wants as much time with her aunt as she can.

Okay, so these pictures were taken on mother's day. Other than aunt Rose (who we are not biologically related to) don't we all look alike?

For mother's day we went swimming (since we were up at Mayo Clinic for Nina's year post-rhizotomy check-up) Nichole would only swim with her daddy and she pretended she was a mermaid. And let me tell you, that girl is heavy even in the water. Must be the low muscle tone.

Nina swimming with her auntie Alex.  (Random fact: Nichole cannot always tell my sisters apart from each other)

Here is Nina with her buddy Alina at Mayo Clinic. They had their rhizotomies at the same time and it was so much fun to see her again.

A few weeks ago, we got together with some friends that have kids with Down syndrome. Here we are, sweaty after a hot day, trying to look our best after a long day.

I had a girls night out about 2 weeks ago. We left the dads with the kids and we were gone for a couple of days. These ladies have made all the difference since we moved. Love them! So thankful, so so thankful that they are in my life.

This picture will eventually have a blog post of its own, but this is Nina on the last day of school. it was an emotional day for me. This little girl is AMAZING! I am incredibly proud of her and how far she has come. 

I just love this picture. Nichole adores her sister Ellie and here they were actually riding on daddy's back. I am not sure what they were looking at, but isn't it just a sweet shot?

Nina with her Opa on Father's day. (Yes, this actually is my dad. Breaking the stereotypes of what Mexicans look like)

Opa with 2 of her grandaughters. We had fun spending Father's day with him. We went swimming, and Nichole had a blast with him. No pictures of that time but it sure was a fun day.

Alejandro and Alejandra. I love this picture of my dad and my sister.

Me and my daddy. Love him to pieces.

Fearless Ellie who has a love for climbing and monkey bars. Love to see her play and move, if you have kids with low or high muscle tone, you understand what I mean by that.

I will try not to go so long without sharing pictures.

Also, I will be launching my website on Friday! Would love to have you stop by, and if you have  a blog, I hope you join me every Monday for a  writing prompt. I am really excited about this!

Thursday, June 14, 2012

One of Those Days

8 What are your thoughts?

It was one of those days, although the set-up for the day began last night while I read the girls the last chapter of Mrs. Frisby and the Rats of Nihm. While I read, we heard a loud crash. I knew Andy was trying to figure out what was wrong with our garage door, and I was sure the bang meant he had finally been able to close the door, ungracefully.

When I joined him in the living room, the first thing he said was, “The garage door is broken, I could not lift it by myself, so tomorrow if we want to get out of the house, I am going to need your muscles to lift that thing.”

I forgot all about it, until this morning when it was time to go to school and Andy asked, “Are you ready?”

This is where I tell you that I am a wimp.

So Andy gets down and gets a hold of the bottom of the door, while I hook my fingers in the closest thing I can find to a handle. “Ready. Lift!” And I pull with all my might and Andy is able to get his hands under the door and I know I am pulling up as hard as I can but that thing is so heavy I am not able to hold it up at all. The fact that Andy’s hands are under the door makes me worried they will get crushed and I won’t be able to lift that monster up by myself.

We try again, and Andy knows I am kind of…useless.

“Okay” he reconvenes, “We are going to get something to use as a lever, or something that will hold the weight of the door so we can lift it. Once we get the first panel up, it should be easier.”

So we find this piece of wood and get it ready so that as soon as Andy lifts the door I can slide it underneath.

We have been out there for a while, and the girls are already late for school. We even wonder if they will have to stay home because we cannot open the garage door.

So Andy lifts the door, and I don’t know, I suppose adrenaline kicks in because I am telling you, my husband turns into hulk and he gets that door pushed all the way up.

“Okay hun, go get the keys and get the cars out” he says.

He is hulk, he is strong! Okay, I run inside to get the car keys. I open the van door first and the alarm goes off.

“Sorry” he apologizes, “I locked the cars yesterday when I thought I couldn’t get the door to close.”

I get the van out in the driveway, then run to the car. It is locked, and I realize I don’t have the right key, so I run back inside to find the key…except that I cannot find it.

I am running like a chicken with my head cut off, from room to room, lifting papers and frantically searching my pockets since I was the last one to drive the car. In desperation I dump the contents of my purse on the bed and realize somehow, there are crumbs all over…but no key.”

“Hun, I cannot find the key, I am afraid I left it in the car!” I run outside and tell him, while he is trying to find a way to get the garage door lodged.

He is awesome, he is not even a tad frustrated.

In resignation, I go back inside and think to move a plate on the counter, and sure enough, I find the key. I then move the car.

I take the girls to school and we are late. Their teachers are great and understanding. Then I go to the office to explain that the girls will be gone Friday and Monday and the secretary is well, not very friendly.

I am back in the school parking lot and I open the car. The alarm goes off. I think I turn it off, but it goes off again. Still, it happens a third time. As I drive off, I remind myself not to run any stop lights because I just realized I dumped the contents of my purse on the bed and my driver’s license is taking a nap.

At home Nichole is demanding. Once Andy leaves for work she wants soup for breakfast. Yes, tomato soup is her favorite, she makes a huge mess with it every time.  And it takes her about an hour to finish it. One sip at a time, watching sponge-bob, and I would ban that show if it wasn’t for the fact that she laughs so hard and I cannot resist that laugh.

When she is done, she needs a bath, like now. But first she needs to go potty, and it takes about 20 minutes for Nichole to go, one of the down sides of low muscle tone. She insists I hug her. This girl needs moral support to go poop.

She gets in the bath and she is happy to get ready for the day. She wants pink clothes and her hair to be beautiful. By the time we are done, it is time to go get the big girls from school. We are supposed to go to Minnesota for a few days right after school, but I had no chance to pack.

We get home and my mom calls, there are thunderstorms and hail in the cities, it will be a nasty day. I check the weather and I feel discouraged and stressed because I have to pack and I want to get on the road soon. So I yell at the kids and I call my husband so I can yell at him too.

Finally, Andy is home and I am not sure what to do. So I am a wimp once more, and decide to stay home, finish packing, and drive in the morning with no thunderstorms, rain, or hail.

I apologize to my husband, because I am really just out of line. I apologize to my girls, and Ellie reassures me “It is okay mom, we can go in the morning.”

And I am so thankful for my family and for their grace towards me.

It was just one of those days, when I react to what happens around me in a negative way and I make it all about me, but one of those days where my family’s forgiveness abounds and I feel lucky to have them.

Edited to add: Andy reminded me that we did not find the car key until I was back from school, and he did get frustrated with me for snapping at him, but he forgave me.

Adding once more: I went to bed really late last night, I don't think I can function happily when I don't get enough sleep.

Tuesday, June 12, 2012

Why my kids with special needs will never ride the bus

11 What are your thoughts?
My kids with special needs will never ride the bus. The reason is quite simple, I know of too many cases where kids with special needs have been harmed or bullied while riding the school bus. Even the special education bus - the short bus - is not excempt from this. Just do a video google search and you will be appalled by what you see.

One of my kids has Down syndrome, and right now we don't have clear and fluent speech. If anything happened on the school bus, she would not be able to tell me. I am a stay at home mom, so there is no reason why I cannot transport my children to school.

And did you know that sometimes kids have to ride the bus for long periods of time? It takes me only minutes to pick up my kids, if they rode the school bus, they could be riding the bus for up to 45 minutes - depending on how many kids need to be dropped off and the route the bus takes - and I am just not a fan of that option either.

I have gotten acquainted with the bus driver and aide from my girls' school. They are really nice, and the aide seems wonderful. She often jokes with me, "When will you send Nichole in the bus?" My reply - with a smile - is "Never!" And most of the time she adds, "I don't blame you."

A teenager with Down syndrome was left in a school bus for hours. Her grandmother received a call from the school 5 hours after her granddaughter had gotten on the bus. She was then found on the bus, alone. How does that happen?

A young girl riding the bus was sexually assaulted. She was sitting only 2 rows behind the driver, who never intervened. Reviewing the tapes the attack lasted for about 20 minutes, the bus driver ignored what was happening. What the tapes revealed was disturbing.

In Florida, a high school student stood up for a special education student who was being bullied every day in the school bus. How did the school respond? They banned the girl who stood up for what was right from riding the bus!

And there are many more stories like this one. Stories where kids are tied down, blindfolded, or hit. All done to the most vulnerable kids. People abusing their power and strength. It is sickening.

So no, my kids with special needs will never ride the school bus for as long as I can transport them. I am not taking any risks.

Photo credit

Monday, June 11, 2012

What 3,000 highschool students taught me about the gift of giving (A guest post)

1 What are your thoughts?

The moment when I was at the center of 3,000 people standing to say they wanted to help my family taught me a lot.

It taught me that I need to get over my inhibitions about fundraising for Malachi, because it's not about me, it's about him.

It taught me that almost nobody will help if you don't ask, but EVERYONE will help if you do ask.

It taught me the strength in numbers and the immense and universal power of compassion.

It taught me that it is really not about the money. None of those people had to donate a penny to make me feel their charity of spirit and none of them was pledging to buy more than a $1 raffle ticket. It didn't matter. Just knowing that people cared enough about our struggle to stand with us overwhelmed my sense of relief and gratitude.

It taught me the truth behind the statement I saw on a church billboard recently: "For someone to feel the gift of giving, you must receive." What if I had turned my back on the Sparrow Club, and said: "Thanks, but no thanks. We're going to do this on our own"? That moment would have never existed. Those kids would have never felt the power of standing together like that. They never would have seen how profoundly their simple act affected me and how much good they can do for a real person just by donating a buck. They would never have felt how awesome it feels to give if I hadn't been willing to receive.

A fabulous blog called Momestery also made this point recently, saying about its recent fundraiser that it really wasn't about the recipients.

"It’s for all of us to learn how powerful we each are, how much we have to offer even with the little we have. We are all in bits and pieces and when we offer our bits and pieces -MASTERPIECES are created!!!!"
It's really true. It feels good to give. It feels good to lend your arm in someone else's push up the hill. In fact, in the last month, I myself have given modest amounts to several campaigns, which is something I really haven't done in the last couple years. Especially since I found out we were having twins, I've been extremely cautious about money and certainly didn't feel like I had enough extra to give away. But those kids taught me that the act of giving BY ITS VERY NATURE means that you have enough. You simply cannot get that feeling from hoarding, or consuming, or even acquiring more money.

How many times have you heard someone richer than you complaining that they don't have enough? They're not lying — they really feel that way. That right there should make it obvious that it's not about reaching the next payday or the next tier of socioeconomic status.

It's not about what you have. It's about what you are willingly give away.


Will you stand with those kids? Do you want to discover how great it feels to be part of our little "masterpiece"? Join our Kickstarter campaign! Or join some other cause! Seriously! I don't care who you give to, just give and revel in the feeling!
____________________________________________________________________

Shasta Kearns Moore is the author of OutrageousFortune.net and a beautiful board book called Dark & Light: A love story for babies. Please consider buying a copy for the babies in your life through her Kickstarter campaign that runs until June 27. One-hundred percent of the profits from the campaign will go to her son's medical needs.

Personal Note: I met Shasta through our connection with Cerebral Palsy. She is a great gal and besides sharing a diagnosis for our kids, we also share a love for writing. In this blog you have seen me advocate for orphans and share about fundraisers. I know Shasta's journey with her son and I know well how expensive therapy can be and how difficult it is to deal with insurance. Sometimes, it is not only kids from far away that need help, sometimes it is our very neighbors who are trying to do the best they can to help their children reach their full potential regardless of their disability. 

Friday, June 8, 2012

Expectations

12 What are your thoughts?
I am linking up with Gypsy Mama for 5 Minute Friday, where you write for 5 minutes, no editing, no over-thinking, you just write! What you get is what you get!


Theme: Expectation
 
 
Go
 
I used to think I knew about unconditional love the moment I became a mother. My precious baby stole my heart and there was nothing that could ever make me stop loving her. I thought I knew what love felt, and I even thought I finally could understand God’s love for me.

The birth of my second daughter, however, challenged my idea of “unconditional love” and showed me how little I understood God’s love for me. My new baby, Nichole, born with Down syndrome, did not meet any of my expectations. I wondered then if my love for my first child had come so easily because she had indeed met every expectation I could have had for her.

I saw Nichole as broken and I struggled to love her. I quickly came to realize that I was the broken one, and it was really God’s love the only love I knew that was completely unconditional. Amazing how God has used my own daughter, a little girl with Down syndrome, to teach me and show me what unconditional love really looks and feels like.

It is not about expectations, it never should have been. It has always been about love.

Stop
 
 

Thursday, June 7, 2012

Living Intentionally

8 What are your thoughts?
Because I am living outside my limits, I need to begin living intentionally.

About 3 years ago, we were in a good rhythm of life, we were living intentionally. We had a speaker come to our MOPS group and she talked about Intentional Living. Stacy Yoder shared with us some practical ways to get our life in track. Yes, it included chore lists and routines. I took to heart what she had to share and put it into practice. Her system literally changed my life...until we adopted. This is crazy, but we have had Nina for 2.5 years and I am still functioning on survival mode. No wonder i am living outside my boundaries!

So I sat down with the girls today, and I told them we were all going to have chores. We made a list, Monday through Sunday, and each day has some chores. My chores include a load of laundry every day, and making a weekly menu and shopping list.

This is what I appreciated about Stacy, she said, "when your chores are done, you are done, and you have the rest of the day. Your goal is not to get everything done in one day, but every day you have small things to do." And she also encouraged us, "If you miss a day, don't worry about it, the point is not to catch up."

The girls and I also worked on our bed-time routines. They have one, and I have one. For example, mine includes:
  • Pick up stuff on the floor
  • Check calendar
  • Make to do list for next day
  • Charge cell phone
  • Write down a schedule for the next day on a dry/erase board (this helps a lot with Nichole and her transitions)
  • Know what is for lunch and dinner the next day
  • Get clothes ready for the girls
Stacy also gave us a nice little notebook. Mine is divided into sections:
  • To do list
  • On-going to do 
  • Shopping
  • Routines
  • Prayers
  • Miscellaneous
  • Wish list
  • Writing 
This little notebook really helped me out! I had a calendar in there and somehow my life felt organized.

So now that I am taking my life back, I am getting back to Living Intentionally. Now that my girls are older, it is exciting that they can participate.

Stacy does not have a blog, or I would send you her, so instead I will be asking her to share her wisdom with the rest of us here. She is amazing!

What do you do to live intentionally? What works for you and your family? What are the things that make all the difference between finishing a day with a feeling of "well done" as opposed to feeling like "barely made it!" Would love to hear your thoughts.

Wednesday, June 6, 2012

Living Outside My Limits

12 What are your thoughts?

I have no doubt about it; I am living outside my limits. Oh I am busy all right, but not busy with the right things. I wonder then, if in some way I am wasting my precious time (and life) by living outside my limits. 

I joined the 15 Habits of Great Writers Series and today the challenge was believe. Believe that you are a writer and wake up 2 hours before you usually do so you can write. I panicked.

I can tell you this is going to be a problem, I will not be able to follow through with the challenge. It is not just because I like to sleep, or because I am not a morning person. No, the problem runs much deeper than that. I already don’t get enough sleep, and it has nothing to do with my children or the household chores that need to be done. My kids are great sleepers and I don’t do chores. Okay, I do minimal amount of chores to keep my family afloat, but I have become lazy. No, my problem runs deeper than that. The problem is I live outside my limits and I lack a good measure of discipline.

Do you live outside your limits? Here are some thoughts for you to consider:

Are you always busy?

Do you have a hard time saying no?

Do you forget things easily?

Do you blame others for the things that go wrong in your life?

Do you commit to things and struggle to follow through?

Do you spend enough quality time with the people that you love and matter to you?

Do you get angry easily?

Do you get anxious easily?

Do you get depressed easily?

Do you crave junk food?

Do you feel as if life happens to you rather than making life happen?

Do you get enough sleep? (If not, why not?)

Do you feel you are constantly trying to catch up with your responsibilities?

Are you often tired?

Do you feel lazy and leave things “for later”?

Are you merely surviving?

Do you have time to do the things you love?

Do you know what fuels your soul and gives you life? (If you do, do you have time for those?)

Do you take care of your body? (healthy diet and exercise)

Do you have free time?

How often do you finish a day and think to yourself, “well done”?

I don’t want to live life outside my limits, I want to enjoy life to the fullest. I don’t want to spend hours checking my e-mail, facebook, and twitter. Sure, I can justify saying I enjoy it, I get to connect with people, but mostly, social media and my endless hours behind a screen rob me of much more than they give. (<--click to tweet)

I won’t be getting up 2 hours earlier to write. Instead, I am taking my life back! And if you live outside your limits, maybe you can join me and take yours back too! I want to live life, and live it to the fullest.

What will this look like for me? I think it means I need to live intentionally, and I will work on what that means for me and share this with you tomorrow. 

Tuesday, June 5, 2012

I am a writer!

6 What are your thoughts?
Okay, that is my declaration: I am a writer.

I am participating in 15 Habits of Great Writers Series and I suppose this has come at a great time.

If you have followed These Broken Vases for a while, you have noticed that I have been doing a little bit more writing outside of this blog. It has been exciting, and it has been fun to get jobs from people finding this little blog of mine.

A few weeks ago I asked you to help me improve my blogging and I am so thankful for all of you that left a comment or sent me an e-mail. My thinking wheels were already turning when I asked that question because I have been wanting to start a more professional website. These Broken Vases is my personal blog and a great way to be connected to you, family, and the special needs community. However, when I send a query letter for someone to consider publishing an article, I want to send them where they can find my best writing not buried amongst our latest family outing. It is just not that professional, don't you think?

So I contacted a friend and asked him to help me set up a website. He has been working on it and just yesterday he handed me over the nice little skeleton and I am doing my best to learn and get it set up.

I am really excited!

I will be writing there 3 times a week, and every Monday I will invite you (yes you!) to join me as I share a writing prompt. My hope is to build a community of bloggers and writers. I know sometimes it is hard to come up with something to write on a blog post, the writing prompts will hopefully spark some creative juices in you too.

Yeah, right now there is not much, but at least you can type ellenstumbo.com and  you will see the page is under construction. And you can always sign up to receive updates, you know, if you want,

Soon, I will also be creating a facebook page (it was a bout time) and I hope you join me there too.

Phew...I am a writer you guys!

And if you want to join the 15 Habits of Great Writers, it is not too late!



Monday, June 4, 2012

I Found My Purpose: A guest post

2 What are your thoughts?

Many years ago, before I had children - even before I was married - my mother once wondered aloud if I would be so career driven that I'd never slow down enough to have children.

At the time, her comment surprised me, not because I was particularly excited about the prospect of being a mom, but because I always just assumed I would be one day. It was Step 3 of The Life Plan (Step 1: Education/Job. Step 2: Meet a Man and Get Married. I'm nothing if not conventional.) I earned a degree in electrical engineering, went to work for the large electric utility in my region, and married my husband, also an engineer, in 1996. Six years later, married, working, but without children, I began to feel that my chosen career path wasn't what I wanted. I spent a lot of time considering my interests, reflecting on my childhood and what I had wanted to do When I Grow Up (be a lawyer) and considering what my parents thought I'd be When I Grew Up (be a lawyer) and what I considered doing but discarded when I became an undergrad (be a lawyer). When I became pregnant with Sarah Kate, I decided that if ever I was going to go to law school, it was time. I asked advice of a lawyer colleague of mine. I gathered my transcripts, studied my options, and waddled into the LSAT. Sarah Kate was due in March; I planned to start law school at the University of Alabama in August.

But then the world turned upside down.

My tiny baby was born two and a half months early, weighing only two and a half pounds - small even for her gestational age. She sailed through the NICU, and we began to breathe easier. All of the books detailing the disabilities that preemies were susceptible to were wrong! She was going to be okay! Three years earlier, our first child died at 20 weeks due to triploid syndrome, so we believed we had a dodged a bullet.
A few months later, Mr. Andi changed jobs. We moved to a great city without an accredited law school within a reasonable driving distance. My dream of being lawyer was dashed, though at the time I barely thought of it at all, because I was focused on Sarah Kate's needs. Despite her easy ride in the NICU, something was wrong. She didn’t sit when she was supposed to, and her legs didn’t want to bend when they needed to, such as when she was placed in a high chair. Our pediatrician referred us to Early Intervention, and everyone kept using the term “hypertonia” to describe her. I researched it online and kept coming up with information about cerebral palsy. In my mind, kids with cerebral palsy had major physical disabilities, intellectual disabilities, and visible deformities, so I kept looking for some other way to explain what was going on with Sarah Kate.

A child with cerebral palsy was not part of The Life Plan.

One day when Sarah Kate was about three, Mr. Andi and I were discussing what we believed God's purpose for each of us was. I struggled to identify it, because though I believed with every ounce of my being that I was exactly where I was supposed to be, doing exactly what I was supposed to be doing, I also had a nagging feeling that I was missing something. I didn't know what it could be, but in my gut I knew there was more for me to do. Just before Sarah Kate entered kindergarten, in 2008, I accepted a volunteer position on the governing board of a non-profit women’s membership organization. When I first said "yes" the position was essentially the national secretary. However, a bylaw amendment changed the job description to be heavily focused on communication. Since that time, I've had to learn a tremendous amount about writing, social media, graphic design, public relations, and branding. I know a lot of people don't understand why I would devote so much time and energy - for free! - to a sorority, and there's not enough room on Ellen's blog for me to say what I'd want to say in order to help you understand. Looking back, what I thought would be a pleasant diversion when Sarah Kate went off to school and an opportunity for me to exercise my mind and set goals for myself - something I'd struggled with since electing to be a stay-at-home mom - actually was a springboard for the work I was meant to do.
Two years into my time on the board, Nathan was born. He was a surprise in more ways than one - an unplanned pregnancy, a premature birth, and an extra 21st chromosome.

Our world that had finally begun to right itself turned upside down again.

This time, though, I was ready in a way I couldn't have expected. Although I didn't "know" Down syndrome, I knew disability. I knew early intervention. I knew awkward conversations with family and strangers. I knew it wasn't fair that both of my children would be born with disabilities, but I also knew that life isn't fair, and that while you can't always control what happens, you can always control how you react to it. Mr. Andi’s mantra – adopted as something akin to our family motto over the years – is “Choose your response.” Mr. Andi was the first to learn that Nathan might have Down syndrome. He had followed the baby to the nursery and overheard the nurse speaking softly on the phone. A short time later, the pediatrician entered my recovery room, looking anxious. I won’t say that I didn’t feel any fear, because I did, but I was surprised at how calm I was. I had spent eight months fearing the worst – refusing to set up the nursery in case something happened, and when I finally did I saved all of the packaging so I could send things back if the situation warranted.

In that light, Down syndrome didn’t seem all that bad.

Mr. Andi, on the other hand, was devastated. He had dreamed for years of a son, and there was probably a small part of him that believed we were “due” a typical child. He descended into a funk that struck more fear in me than the diagnosis. I felt a strong need to protect my newborn son from his father’s disappointment. I remember lying in the hospital after my C-section on the second night after Nathan was born and deciding that I HAD TO SEE HIM. He was still being closely monitored in the nursery, and I walked down the hall, pushing my IV pump as I moved carefully and deliberately, protecting my incision. He was mine, and I knew that I would fight for him, no matter the cost. The next morning, a deacon from our church came by to see us, and to pray with us. Within the hour, Mr. Andi threw off his depression. His demeanor changed completely, and he never looked back. He remembered his mantra, “Choose your response,” and decided it was time to live up to it. Once upon a time, I wanted to be a lawyer. I'm not now, and it's unlikely that I ever will be. But what IS a lawyer, really?

An advocate.

Everything I write on my blog is a form of advocacy. Sometimes, it's an overt action in defense of a position (or even, occasionally, an offensive mounted against those who would devalue children with disabilities). Often, it's spreading awareness about causes that touch the special needs community. Other times, it's by writing ordinary things about our extraordinary life - stories that demonstrate to the world that we are more alike other families than we are different. There will always be someone more successful than I am who writes better than I do with a larger following than I have. But there will never be another person who can tell my family's story in the way that I can, and my family has a story that is worth telling. A story that changes people's hearts. A story of beauty in imperfection. A story that needs to be told.

I have found my purpose.

Sarah Kate, Nathan


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Andi is an ordinary mom with extraordinary kids, living an ordinary/extraordinary life - a daughter with cerebral palsy, a son with Down syndrome, an adventurous husband, a wild Westie, a camera, and a worn out pair of running shoes. You can visit her blog, Bringing the Sunshine and find her on twitter.

Friday, June 1, 2012

I See You

6 What are your thoughts?
I am linking up with Gypsy Mama for 5 Minute Friday, where you write for 5 minutes, no editing, no over-thinking, you just write! What you get is what you get!


Theme: See




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I see you at the park, at the grocery store, or at school. I can tell that you are tired, and I can tell that you feel alone. Sometimes, I can almost feel what you are feeling. Maybe because at times I have felt it too.

Having a child with special needs can be so difficult, and sometimes it is easy to believe that nobody will ever understand, that nobody will ever get what it is like to be in your shoes.

Today, I want to tell you that I see you, and you are not alone.

When the days are hard, when it feels like your child will never reach a new milestone, I am here for you. Other moms of kids with special needs are here for you. We understand each other, we get it, and sometimes, we do life together because it is in that community that we can laugh and understand even the unspoken words.

I see you, and my heart goes out for you. But I want you to know I see so much more too.

I see the beautiful friendships that will develop because of your child. I see the milestones that will come someday, no matter how long it takes, but when they do come I see the celebration, the joy, and the pride. I see the overwhelming and fierce love you have for your child.

I see you, the mom, the woman. Someone who rises above the others and challenges the world all for her child. I see you, and you are beautiful.

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