To My Child with Special Needs

Over the weekend, I read the post The Pain of Disability by Kerry at Transcending CP. (You’re following her by now, right? She’s an amazing 19-year-old, former preemie and is a triplet who has CP and the gift to write). In her latest post, Kerry shared the hurt she has caused her mother. I had a visceral reaction to the post. I wanted to respond, but it wasn’t working from my phone, so instead, I emailed myself and am posting that message here. In short, I wanted to hug Kerry and I wanted to hug her mom and I really wanted Kerry and Owen and Jack and US Boo and UK Boo and Tucker and every child with special needs to know this:

To my child with special needs,

It’s my honor to be your parent. I hate what you have had to go through…but you know, for ME, I wouldn’t change a thing. Every day, I see a miracle take place. I see something happen that maybe shouldn’t have. To be apart of YOUR life. I am privileged and couldn’t be more proud.

I won’t deny it, you will see that I have hurt. Seeing an innocent child go through what you have had to go through…and the struggles you will continue to have…that’s hard for a parent to accept. To know that I’m the parent and powerless to make it…for YOU…all go away. Yes, that has hurt. However, YOU did not cause that hurt.

And, whatever hurt I have felt is far surpassed by the joy of each moment I get with you. Watching you try, watching each of your successes – big or small – celebrating how far you have come; that, my child, I wouldn’t change for the world.

YOU have not caused me any pain. YOU are amazing and have shown me a joy, I’ve never before knew existed. YOU have made me a better person.

EVERYDAY, I am thankful to be your parent.

 

Click image to pin post.

Click image to pin post.

 

Changing Times

One of the things that really surprised me (and those that know me well) about this time since Owen was born was how little I missed work.  My career has always been a huge part of my identity and my passion.

Many assumed I’d be at home pulling my hair out and longing for days in the office…my hair is still in tact and while there were days in the throes of cold and flu season that I would have liked to be anywhere other than our home, I wasn’t overwhelmed with a need to work.

When I started the blog, some, including myself, thought that one day I’d turn it into a money-making venture or maybe work towards writing a book or some sort of business.  I didn’t.  ANRC has maintained a hobby for me.  It has grown to a decent sized blog, but that’s been because readers share it with others, not because I’ve been focused on growing it.  I’ve had offers to advertise or to test products and I’ve chosen to not do it because I’ve wanted this space to be organic and about my truth without worrying about writing a post that’s going to go viral.

Between ANRC and the extent of Owen’s and Kellen’s needs, neither my heart nor my brain missed work.   That is…until recently.  Over the last couple of months, as I’ve blogged about suddenly starting to be able to breathe again  and learning to find our new normal, I was noticing that something was missing too.  I’d be in stores and notice the new products on the shelf.  I was starting to be captivated again by what was brilliant, or not so brilliant (in my opinion) in the market place.  My brain was shifting from constantly on alert for the next trip to the hospital to constantly on the alert of how people shop.  I was starting to think like a marketer again.

Kyle and I started talking about what the timing would look like for me to go back to work and we agreed, it’d make sense for me to start considering part-time work over the next 12 months.  After the Fourth of July, I freshened up my resume and dabbled on the internet job searches.  I wasn’t ready to put the word out to anyone to start networking yet, but I was seriously processing a change.

And then, one night I was laying in bed taking one last look at my email.  I had a LinkedIn invitation to connect, so I popped on the LinkedIn app.  A job on the app caught my attention.  I read it about 5 times.  It was looking for someone with exactly my background and it was in the green/eco space (a personal passion) and a start-up (I dream of being an entrepreneur).  However, it was a full-time position and start ups…they can be a lot of work.  I pushed back the urge to jump out of bed to run downstairs to apply.

I waited two days (and can I tell you I had the craziest dreams for those two days).  I have been reading Lean In by Sheryl Sandburg (a great book for all women and men), she talks a lot in her book about how sometimes you have to take the right opportunity, even if the timing might not feel right.  She basically says, don’t assume the timing is wrong until you have asked the question.  So…I applied.  I interviewed.  I received an offer.  I accepted an offer.  I hired a nanny.  Yesterday, I started training the nanny.  Did I mention that was all in the last two weeks?  I officially start working on August 5.

In truth, I’m still as surprised as everyone I tell (not so surprised that I haven’t been to the mall to freshen up my work wardrobe, of course).  The response, however, has been great.  Once the initial, “I didn’t know you were looking for a job” surprise wears off, everyone says the same thing.  “This is your time”.

I’m really proud of what I’ve done for my family these last 2.25 years.    I did things, that I never imagined I had in me to do.  And now that Owen’s health has reached a place where a qualified nanny makes sense, it is my time focus on all the things I’ve always imagined I would do.

I can be changed by what happened to me, but I refuse to be reduced by it.

I’m firmly of the belief that the best way to teach your kids to reach for the stars, is to be an example of what it looks like to reach for the stars.  For some people, the ability to stay home with their family is reaching for their stars.  And those are awesome stars to reach.  However, they aren’t my stars.  I deserve to find my stars and now is my time.

Once they are done congratulating me, the next question out of everyone’s mouth is, “what about ANRC?”  I’ll talk more about it in an upcoming post, but the short answer is, ANRC will continue to be my hobby.  I may be posting closer to 1-2 times a week instead of 3-5 times, but I’m not done.  This community is too important to me.  Each reader is important to me.  Advocating for preemies and their families is important to me.  Our journey with prematurity continues and so will this blog.

Oh, and the product I’m going to be working on … it answers a need for so many preemie families.  I can’t wait to tell you all about it when I’m able.

The Best Present I Ever Gave Myself

For Owen’s first birthday, I gave myself a present.  This blog, Ain’t No Roller Coaster.  At that point, for a year, my life entirely revolved around what Owen and, to a lesser degree, Kellen needed from me.  There was no thinking about how I did it, or really even what I was doing.  I just did it.

In many ways, my biggest outlet was writing CaringBridge (CB) updates.  CB was my connection to the outside world and writing the posts helped me process the medical complexity that was surrounding me. However, I felt like I still had so much to say.  I was literally bursting with the need to write.  Not just write about the latest medical updates, I needed to also process the emotional complexity that I had been doing my best to ignore for the previous year.

Keep in mind, in person, I’m one of the most emotionally guarded people you will meet.  I’ve always been really good at telling people what I think, but I’ve never been good at showing people how I feel.  That doesn’t mean I didn’t feel things.  I did.  However, over the years, I built Guantanamo Bay level security walls around me.  I never let people know when I was hurting and I let very few people close enough to hurt me.  Fortunately, I have two parents, two brothers, several amazing friends and a husband who have always seen through me.  I also always had my journal.  What I was afraid to show people, I wrote.  I’ve done it since I could write.  My mom still has notes that I left her when I was in elementary school.  Writing has always been my outlet.  However, when Kyle and I moved in together, I burned all of my journals.  I didn’t really need them anymore.  With Kyle I’ve always been secure enough to show my feelings (and still tell him what I think, too :-)) and so I didn’t burst with the need to write anymore.

That is, until Owen was born.

In truth, we were barely holding ourselves together well enough to give our kids and his job the bare minimum.  I couldn’t take his burden too.  And, I would never have asked him to take mine.  We walked next to each other, we helped each other over hurdles, but individually we carried our own burdens.  I still don’t know if that was “the right” approach or not, but we were in triage mode.  It’s the best we knew how to do right then.

And, I knew, I always had my old friend the pen.

However, this time, writing it for myself was no longer enough.  I started meeting other preemie moms in person and online and I heard so many similar themes about how we were feeling.  They were they same themes that I was writing privately.   Also, I saw the hurt that 36 (now 38) years later that my mom still felt.

I needed to share, I needed to feel like I tried to let others understand that this prematurity stuff is a big deal.  I could only share my story and my feelings, but I had seen enough from others, that I knew I wasn’t alone.  And maybe, if I had the courage to admit the deepest, darkest thoughts about this journey…not just in my personal journal, but out in the most public forum possible…maybe it would help me heal and maybe it’d give others the courage to do the same and maybe when Owen is older if people think, “he’s nothing like the rest of you” (like they so often say about my preemie brother who has behavioral disabilities) maybe people would attempt to understand instead of judge.

Maybe…?  What’s there to lose?  My pride by sharing my emotions?

Today is the one year anniversary of ANRC.  My personal Guantanamo Bay may have been downgraded to Fort Knox…it’s a start.  Thank you for giving me the courage to keep going.

Liebster Love

Last week, for the first time, I participated in a blog link up.  It was hosted by one of my favorite special needs blogs, Love That Max.  I shared a link to “This is Owey.  Owey was born Sick” and then spent one of Owen’s nap times reading posts by many special needs blogs that were new to me.  I have many new blogs in my Google Reader list.  ANRC also had visits from other bloggers and a few were very encouraging.  One was so encouraging that she nominated me for a Liebster Award.  A great big thank you to Joy at I Can Say Mama, for the nomination.

the-liebster-award-1_zps8401af7f

I did a little digging around the interweb and the best summary of the history of the Liebster Award was this post from Sopphy Says.  The nuts and bolt of it is, the Liebster Award is a way for small bloggers to encourage each other and introduce each other by 1) Graciously accepting the award and 2) Passing it along.

As time has gone on, the rules have evolved in what it means to receive the honor and I’ll hold up my end of the bargain by playing along.  Here are the Liebster Award Rules as Joy passed them along to me:

1. You must thank the person who gave you this award
2. You must display the Liebster heart on your blog
3. You should nominate 3-5 up-and-coming blogs (some say 200 is small, others say 3000 is small)
4. Each person must post 11 things about themselves
5. Answer the questions given to you by the blogger who nominated you
6. Create 11 questions for those you nominate to answer
7. Notify your nominees and provide a link back to your post.
8. Don’t give the award back to the blog that gave it to you.

Whew, it’s a lot of work to be honored!  So here goes, eleven things about me:

  1. I believe there are writers that blog and bloggers that write.  I think I fall into the latter, but I’d love to be able to get to the former.
  2. Before kids, I vacuumed in perfectly straight lines and cleaned my house, top to bottom almost every week.  I don’t do that anymore.
  3. I never make the bed unless the sheets were just washed.
  4. Had I been a boy, my parents were going to name me Thatcher.
  5. I could easily live without the TV.
  6. My only exceptions to the TV rule;  Green Bay Packer Games and Downton Abbey.
  7. The biggest thing I miss about life pre-kids is traveling.  I love going to foreign countries and learning about their cultures and discovering their food.  One of my favorite gems…Bulgaria.  The food is amazing and the country is beautiful!!
  8. I procrastinate.  On everything.  It really is a wonder that I get 4-5 blog posts out most weeks.
  9. I’m obsessive about how my jeans fit.  I only allow myself one pair per year, but I will pay for the perfect pair.
  10. I’m 6th generation Wisconsin born on my dad’s side of the family and at least 5th on my mom’s side.  From my mom’s maternal side, I’ve gotten as far back as the early 1700’s and they were still US born.  My American roots run deep!
  11. My first job was as an Assistant Merchandiser for Jockey men’s underwear.  I’ve seen lots and lots of men in their underwear.  I’ve even helped the models change into them at fashion shows.  Not a bad gig for a woman in her early 20’s.

Here are the eleven questions that Joy asked of her nominees.

1. What household task do you hate the most?  Putting clothes away.  On the most part, I get them washed and folded, but getting them from the couch to the drawer is hard for me to do.
2. Which positive event or situation from your childhood do you remember the most?  My grandparents lived with us from the time I was 2 through 5.  I am a natural-born night owl, just like my Grandma Karyl.  So, at 8:00 my parents would put me to bed and I’d lay in bed and talk to myself and sing at the top of my lungs.  My parents would go to bed at 10:00 and then I’d “sneak” down and hang out with Grandma.  I use “sneak” in quotes because I remember her playing the piano and me singing along.  We didn’t exactly live in a mansion, so I’m sure my parents were aware that I was awake.
3. If you had a time machine to go back in time, would you change anything in your life? What would it be?  I hate that I have a yes to this, but I do.  I’d have insisted on including a Perinatologist through my pregnancy with Owen.
4. Do you do any sports?  I kept the bench warm for the basketball team for a couple of years.  I’m 5’10”, so with basketball shoes on was legally able to round-up to 6′ on the team roster.  However, I didn’t start playing until 9th Grade and wasn’t overly dedicated so my biggest contribution to the team was making the average height look more impressive.
5. Which famous person would you choose to have dinner with?  I’m going to assume I can go with a living or passed person and will chose Jane Austen.  It’s fascinating to me that this woman who was engaged at a young age and then forced to break it off for society reasons went on to spend the rest of her life alone and writing romance novels about people loving outside of their society.  Plus, I love her approach to writing character qualities – she writes insults like no other.  So subtle that if you’re not careful, you’re probably going to miss them.   Of sir Walter Elliot she wrote, “Few women could think more of their personal appearance than he did…”  In Sense and Sensibility a favorite is about Mr. John Dashwood, “He was not ill-disposed young man, unless to be rather cold hearted and rather selfish is to be ill-disposed…:  I have a feeling, Jane Austen was a feisty woman and I admire feisty women.

6. Name three things (not persons!) you cannot live without.  iPhone, Computer and pastries (anything pumpkin, custard filled donuts, apple fritters).

7. Something you would love to be able to do but never learnt or are not talented enough for?  Music.  Man, do I wish I could sing or play an instrument.  I’m really musically challenged.  I cannot find the beat to music.  I can’t clap to it and when I took piano lessons as a kid and the teacher would use the metronome, I had no idea how it was supposed to be helping me.  I can still read the right hand of piano music, but I wouldn’t say I can play.


8. What is your most favourite song of all times?  I will have to go with “My Favorite Things” from Sound of Music.  I still love watching Maria and the Von Trapps and watched it, I’m sure, to ad nauseam for my family.  Actually, the only song I can still play from memory on the piano is another (notably more simple) Sound of Music tune, “Do-Re-Mi”.


9. What would you do if you won $1MM in the lottery?  I would start a trust for each of my kids’ education, do some remodeling to our house and yard and start a foundation that works with siblings of those with special needs.  These siblings have their own unique special needs that often aren’t met and, in my opinion, often discounted by others.

10. Your favourite meal?  Sushi, edemame and a cosmo (or 2) finished off with tres leches.

11. What do you see when you look out of the window right now?  I’m writing this Tuesday night from a neighborhood cafe.  The window is behind me, but if I crank my neck, I see the road, a few parked cars and houses above the bank across the street.  Also, this cafe still has its Christmas lights up.  It’s new, so I haven’t figured out if that’s just their decor of if they are a little behind on taking down their decorations.

Now for the best part, I get to nominate some new Liebster Award winners.  Please check out their sites and leave a comment that you were there.

Jana at Keeping up with the Kimmels:  A story of micro preemie twins due to twin to twin transfer.  Cohen is adorable and doing well.  Carter lived only 20 minutes and it’s in his memory that his parents became big supporters of the Teeny Tears foundation which donates beautiful, preemie-sized, bereavement diapers to hospitals.  Jana’s currently 20 weeks pregnant!  I think you’ll love her honesty and I know she’d love more people praying and cheering her through this pregnancy.

K at Transcending CP:  I just found this blog at the link up last week.  Oh my goodness, it is good!  K is an 18-year-old triplet with CP.  She’s honest, thoughtful, insightful and a really, exceptionally talented writer.  K is also a great role model for all of our special needs children.  Start reading and you will not stop.

Danielle at Happy Being Trevy:  I’ve been following this blog for a few weeks.  Danielle’s son, Trevy, has catastrophic epilepsy.  She will make you laugh and sometimes slip a tear and she’ll always be honest and full of hope.  Trevy is amazing – you’ll be a better person knowing his story.

Jana, K and Danielle, Here are the 11 questions, if you chose to accept the Liebster Award.

  1. What made you start a blog?
  2. What is your favorite season?
  3. If you could have one of your wishes granted, what would it be?
  4. Who has been one of your biggest supporters in life, how have they supported you?
  5. If you could live anywhere in the world, where would it be?
  6. What do you want to be when you grow up?  (Assuming none of us think we’re grown up yet).
  7. What do you think is your best quality?
  8. If you could help the world understand one thing about special needs, what would you want them to know?
  9. What is your favorite book?
  10. What are three things that make you smile?
  11. If you could have a superpower for a day, what would it be?

Posts of 2012 Every Preemie Parent Should Read

It seemed 2012 was a year of solidarity within the Preemie social media community.  Life after NICU and Papas of Preemies launched late in 2011 and early in 2012, several private Facebook groups started, there was the first Parents of Preemie Day in the spring and the first annual World Prematurity Day was in November 2011 and grew exponentially in 2012.

Having the support of a community has been a key element to getting through life with a preemie – especially during cold and flu season lock down.  Here is a collection of some of the 2012 posts from around the community that I’d recommend to any preemie parent or friend/family of a preemie family.

Posts to read when you are a new preemie parent:

Dear New NICU Mom by Lindsay Franks for Life with Jack

Dear New Preemie Parent by Tatum Marinkovich for Ain’t No Roller Coaster

A Letter to Me by Joel Brens for Papas of Preemies

Posts to read when you need to hear someone say the right thing:

How to Talk to a SN Parent by Marty Barnes for Papas of Preemies

What to Say (when a parent loses a child) by Jana Kimmel for Keeping up with the Kimmels

Post to read when you need a reality check:

Catch up by 2? by Jessi Bennion for Life with Jack

Post to read when words hurt:

The R Word by Amanda Knickerbocker for Understanding Prematurity

Post to read when there is an older sibling:

The Therapy Fund Vol. 6 by Melissa Harris for The Tales of the Anti-Preemie

“I am Preemie Parent, hear me roar” post:

“Get over it,” “Just Fine,” “Normal” by Tatum Marinkovich for Ain’t No Roller Coaster

Post to read over and over and over again:

1st Corinthians for Moms written by Katie Loveland for Life with Jack

What preemie posts helped you most in 2012?

Click Image to Pin on Pinterest

Click Image to Pin on Pinterest

editors note:  I had mistakenly used the wrong last name for Melissa from Tales of the Anti-Preemie.  The post has been corrected to reflect her correct last name.  My sincerest apologies Melissa!  

The words you write

When I started this blog on April 23, 2012, I had no plan or know how.  I only had an overwhelming urge to write and share our story.  I had a strong desire for people to really understand Owen’s life as a former micro preemie.  I needed people to see that just because he was out of the hospital that we weren’t done.  I also wanted them to know that the rest of the family was healing too.  In that first year, I felt my life revolved entirely around Owen.  Through ANRC, I was looking for a place to fit the rest of us back into the picture.

What I got was so much more.  ANRC quickly became a place where a small but loyal following of friends, family and fellow preemie families came together as a community that supports our family and the preemie community as a whole.  Many say that comments are a bloggers crack, and I will agree wholeheartedly.  Comments from readers have often inspired me, challenged my thinking and validated my feelings.

I’ve received notes from people I haven’t seen since Elementary school…seriously, it’s been almost 30 years! (click images to go to original post).

melissa

I’ve found support in people I never knew would understand, here’s an example from a friend’s mom.

kay

 

There have been comments that have made me want to stand up and cheer.

Sheri

 

There have been comments of support from more established preemie bloggers.

Jessi

 

There have been comments that make me realize that people who aren’t in the preemie community deserve more credit…many really do “get it” (this comment is longer than what I could comfortably get in one viewing, click on the image to read the rest).

diana

 

Every comment means something to me and is greatly appreciated.  I’m not a person who shares my emotions well in person and writing ANRC has been an important part of my continued celebrating and healing, but it’s the connecting element of this blog that I find to be most beneficial.  Whether you have been in my life forever or just found this blog today, thank you for being part of our support system.