Each Parent Has His/Her Own Course Too

I’ve met several families who have had preemies with similarities to Owen’s course.  But I’ve never heard of a story exactly like his.  That’s not because Owen is some sort of special case, it’s because EVERY preemie is a special case.

There are no two preemies exactly alike.  The course of Ailyn does not predict Virginia or Charlie’s.  The course of Jack does not predict Owen’s or V’s or Boy Boo’s or Tucker H’s.  Not even twins, like Destroy & Search or T & K, who have the same parents and same length of time in the womb have the same course.

The same is also true for any type of special needs.  Kerry’s Cerebral Palsy is likely different from Max’s Cerebral Palsy.  Girl Boo’s undiagnosed special needs don’t look like Tucker C’s who has a kind of sort, maybe, not quite exactly, but a lot like diagnosis.

I know you know that every child – special or typical needs – has his/her own course.  It’s not always easy for us as parents, but as a whole, I feel like this community really does a great job of giving our kids permission to end up in different places.

Where I would argue we don’t give that same permission is with ourselves.

It’s an interesting perspective being a blogger who is really open with her emotions through all of this.  After two and a half years, our family is finally settling into some sort of groove.  We are forever changed, but we are getting to a place that is more about moving forward and hope and  joy and less about living in constant fear and simply thinking it’s a good day when all the meds and feedings were on time all while trying to figure why/how could this happen?.

Some families are wondering what took us so long to get here.  Others are wondering how we could be here so soon.  Just like our kids’ course and outcomes differ, the parent course and outcomes differ.   And it doesn’t have anything to do with the course of the child.  My husband, Kyle, and I have completely different perspectives on much of what happened.  We have the same two preemie children and each experience effected each of us differently.

Just because I went back and toured the NICU, doesn’t mean that I think everyone should.  In fact, my husband would probably rather do just about anything than to step foot beyond those doors again.  Just because I choose to believe that there wasn’t a reason for any of this happening and that it’s just what happened.  Doesn’t mean I don’t respect people who do feel this was part of God’s plan.  Just because writing a blog that details every negative and positive feeling I have had on this journey works for me, doesn’t mean it’ll work for everyone…notice, I don’t talk much about Kyle on this blog?  He knows it’s what I need and he respects that.  I know he wants to keep his path private and I respect that.  Same kids, same courses.  Different outcomes.  Both outcomes are okay.

Maybe I’m over thinking it, but I’ve received a few comments and private messages lately that made me think that my sharing where I am, made others feel bad about where they are.  No one has come across as angry at me for sharing what I’ve felt, but it has seemed a few times, they have been angry at themselves for not being in the same place that I am.  If you fall into that camp; I am sorry.  It is never my intention to make someone feel bad (unless you gave me crap about being asked to wash your hands in my home).  I do not think that my thoughts and experiences represent everyone.  I’m only sharing because 1) I have this inner need to share this experience.  I know no other way to try to make sense of it all  2)  I still find the time to share because if every once in a while it makes other people feel better about their own experience, it’s worth the effort.

Most of the readers of this blog are preemie or special needs families.  We are all brought together by what we have in common – beautiful kids that didn’t have the expected course.  I love having this group for that support and also want to remind everyone that your perspective is not the same as mine, or each others on every point.  That’s okay.  We can still join together to remember those who had much too short of courses, encourage those still on an unexpected course and support each other as we heal.

Just like our kids,we parents have our own course too.

PS – check out all the links to see more inspiring preemie and special needs stories.

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.

In My Defense: Why I Stink at Replying to All Forms of Communication

I have a few posts planned in the “In my defense” theme.  Here is my first.

If there was an award for “Least Likely to Reply” I would be the Mrs. Universe equivalent to the winner.   If I were really honest, I’d change my voice mail greeting to say:

Thank you for the phone call.  Please note, I almost never answer my phone and I never listen to any messages.  For best chance of a response, please hang up the phone and send a text.  If I don’t respond to your text within 48 hours, I suggest a resend.    If the reminder doesn’t work, please accept my apologies in advance.

 

Email and Facebook Private Messages would have this auto reply.

Thank you for the note.  I do my best to respond to all messages that require a one sentence reply within one week.  However, a reply that requires thought on my part or cannot be communicated in less than one sentence may take closer to one month.  If it reaches beyond one month and I still have not respond, I will be too embarrassed to respond so late and will delete your message.  Feel free to resend, or send me a text, if this urgent.  Thank you for your kind understanding, Tatum.

So, you’re probably thinking, “well, at least she responds to her texts.”  I’d like to say that’s true, but I can only say that I’m better with text, but far from perfect.  Texts are not instant feedback guarantees with me.   Texts often take 48 hours and I can pretty much guarantee, when I do respond, it’ll be from the toilet (err…my office with a lock on the door).

What I hate most about my lack of communication…with EVERYONE…  Seriously, the lottery could be calling to tell me I won the $1 Billion jack pot and I may forget to reply…is that I know it comes across as me thinking my time is more valuable than other people’s time.

I really… I promise.. I do not think that.  We are all crazy busy.  My life is not more important than anyone else’s.

However, my life structure is different from many other’s.  It’s especially different from when I worked outside of the home.  In my working world, my work day was structured in 30-60 minute time blocks.  I usually had meetings filling 50%-100% of my hours in the office and then I’d come home and “do” my work after Kellen was in bed.

Do you know what I would give today to have 30-60 minutes to discuss/focus on anything?  30-60 minutes without needing to stop to give a feeding, or put on braces or an eye patch, or redirect from an accident waiting to happen or to answer “why is my [pretend] car’s exhaust so stinky, mommy” or respond to, “I’m still hungry, mommy”.  30-60 minutes of my brain mostly being focused on one topic.  Now that, is a luxury I can barely imagine anymore.

Honestly, the bathroom is my only sanctuary…that is, if you consider a sanctuary a place where tiny hands are reaching under the door and another voice is yelling, “what’s taking you so long, mommy”?  My day revolves around the needs and attentions of a 2 and 4 year old.  Do you know what their attention span is?  5-10 minutes.  MAX.  And that’s only for something really, really interesting.

This is not complaining.  This is reality.  My world today, is not scheduled in 30-60 minutes time blocks, it is structured in 1-2 minute increments.  If I can give any topic a full thought for 5 minutes, I’m ecstatic.  It might even come out relatively clear without me forgetting a step or a punctuation mark.

I know what you’re thinking, “but there is always nap time”.

Owen takes anywhere between a 15 minute and 3 hour nap (usually 30-60 minutes).  In that time, I write a blog post, make any appointment phone calls I need and try to spend a little time on social media…because that’s how people find the blog.  Oh, that’s also often the first time I’ve eaten all day and about every third day, I’m happy to squeeze in a shower.  Gross, I know.  But again, that’s reality.  (Let’s not discuss the last time I got to take a long enough shower to shave my legs…I might be cast in an upcoming Geico commercial if I’m not careful).

“Okay, I’ll call you at night,” many people think.  By 8:30 when both kids are in bed and I’ve just spent the last 13 hours thinking in 1-2 minute increments, my brain is fried.  I might be on the computer as I pull up The Voice on demand (no time to watch it when it actually airs) and stare at Adam Levine (because I know he’s secretly into married, special needs moms who don’t shower or shave on a regular basis) while I poke around on the computer.  But, really, what I’m doing is waiting for 11:00 when I can go feed Owen and then go to bed.  My brain needs this quiet.  It’s going to be thinking in 1-2 minute increments again in 8 hours.

So, at the end of the day, my email, voice mails  texts and Facebook messages, don’t always get a prompt reply because if you’re asking me for more than two minutes, I will gladly give it, as soon as I find it.  I hope it’ll be soon, because I probably really do want to talk to you.

And, maybe you’re wondering, “If you’re so busy, why not quit the blog”.  Owen is up for his nap now and needs to be fed and have his braces put on, so I’ll just answer with, “Hell, no.  I love my blog.”