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.

Defining Owen

I always seem to pick the slowest line at the store.  Yesterday wasn’t any different.  It wasn’t until I had everything out of the basket and on the conveyor belt that I realized the cashier was in training.  Not only was he painstakingly slow, he also didn’t respond to my repeated requests to please scan the boys’ baseball set and bumpy ball so they would stop asking for them.  Isn’t it in Cashiering 101 to appease all small children first?

The cashier who was doing the training sensed our impatience enough to try to keep us entertained.  We often hear the same things about our boys.  “Look at their beautiful red hair” and then “Oh, those curls!”  Owen knows this is for him and then he gives a cheesy little smile that says, “yes, I know I’m cute”.

I knew what was coming next.  “How old is he?”   But this time was different, before I could say anything, she and Owen spoke in unison.  Hers a question?  “Two?” and his a proud statement, “Two”.

I didn’t know which direction to target my beams of joy.  Towards Owen for engaging in the conversation without my coercion?  Towards this stranger who thought he looked two?  Or back to Owen for actually looking like a two-year-old?  Or, wait, should it be to the woman because she didn’t follow the question with a look that asked, “so…what’s wrong with him?”

It’s funny how such an innocuous question like, “how old is he,” can feel like a loaded inquisition.  I’ve posted in the past how I had stopped correcting Owen’s age long before doctors did. But, I will admit, I still often felt the need to explain.   I guess I never questioned that need, until in this instance, when I didn’t have to.

After confirming Owen was two, she turned to Kellen and asked if he was 5 or 6.  He beamed too.  She said she was surprised he’s only four because Kellen is much taller than her four-year-old.  You know, I didn’t feel the need to say, “he’s tall because I’m 5’10” and his dad is tall, too.”  I felt no need to explain something that is meant to be a positive.  I mean seriously, think about it, when your kid is said to be smart or attractive, do you ever feel like you need to explain it?  (It should be obvious it’s because they have stunning geniuses for parents).

Why do we (I) feel that we have to explain why our kids are less than average in something?  Owen actually is pretty big for a former micro preemie (~34″ and 24 lbs at 27 months), but his abilities are not that of the average two-year-old.  Yes, there are several reasons why Owen is where he is.  But (and it’s a big but), I feel like every time I explain that he’s amazing “all things considering”, I’m reminding him (and Kellen) that he’s different…in a less than way.

The truth is, there probably won’t be a day in his life that Owen won’t think about the fact that he was a micro preemie.  Even IF he gets lucky and is one of the few micro preemies that doesn’t have life-long disabilities, every time he looks in the mirror he’ll see scars covering his abdomen, on his back, on his neck and his arms and wrists.    Every time he goes to the beach or gets intimate with a girl (or boy), he’s going to be asked to explain.

Being a former micro preemie is a part of his story and I want Owen to be proud of how far he has come.  However, being a former micro preemie does not define Owen…and I never want it to be his excuse for giving up on his dreams.  Owen has the rest of his life to define who he is.  It’s my job to make sure that he understands his possibilities…not in spite of his disabilities…but regardless of them.

Thank you, Target Cashier Trainer-lady.  I needed that reminder.

 

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I Never Planned to Be a Stay At Home Mom

If you would have asked me all the possibilities of my future… I wouldn’t, in a million guesses, have guessed a stint as a stay-at-home mom would be part of it.

First, before the haters come after me, I must qualify that I have never seen anything wrong with being a stay at home mom.  My mom stayed home with us and I loved that as a kid.  She was a great role model and I’m proud of her and the way she raised us and cared for our home.  I have all the respect in the world for both choice and circumstance stay at home moms.  It just was never the path I imagined for myself…kind of like I never imagined myself as an astronaut.

Maybe it’s because I was the only girl in the family, or maybe it’s just innate, but I’ve always seen myself in leadership, or what was more traditionally considered masculine, roles.  In Kindergarten, I remember taking a field trip to the hospital.  At the beginning of the tour, each child was able to choose a doctor’s hat or a nurse’s hat for the tour.  With only one exception, every girl chose nurse and every boy chose doctor. I was the exception.  I was the sole female doctor and until my teacher, Mrs. B, pulled me aside to commend me on being brave enough to make my own choice, I didn’t even think anything of it.  I wanted to be the doctor, so that’s what I chose (I’m both proud as hell and often exasperated that Kellen inherited this same independent-minded spirit).

When I was six, our family took a trip to New York City.  I fell in love and knew I was going there.  The image I had in my head was of me in my business suit walking down the sidewalks of busy Manhatten with a briefcase in hand and going to my important office job in one of the towering buildings.  I never really had a princess stage.  No fluff, just streamlined silhoettes…like business suits.  It was the early 80’s so I’m sure the suit in my head had some fabulous shoulder pads.

Or maybe it was the 90’s version…

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I mean seriously, even in the 90’s who had their grad pictures taken in a business suit?  It’s probably the last time I enjoyed wearing a business suit!

In part, I wonder if I never imagined myself as a home-maker (or nurse or admin or insert any other stereotypical feminine role here) because I knew I’d stink at it.  When I think of the skills and traits that I imagined were important for a stay at home mom, I don’t excel at any of them.

  • Nuturing and snuggly:  I have a bad habit of laughing when people fall and hurt themselves.
  • Enjoys spending time with kids:  Truth?  Not really.  At least not 24/7.  Kids crack me up and are a lot of fun, but my patience with repeating myself is kind of extremely low.
  • A green thumb:  I can barely keep a plastic plant alive
  • Enjoys arts and crafts:  I like sewing, but not as an art-form, if that makes sense.  I like the idea of art, but my brain isn’t creative in the artistic way.
  • Home decorator:  I think it took 5 years before I got all the pictures on the walls in our house.
  • Cooking:  Hate it and stink at it.  Kyle still does most of it in our house.  When I do it, we sometimes are pretty hungry at the end of the meal.
  • Clean:  I grew up in a house of neat freaks.  I was the outlier.  I do not like dirt.  But I’m lazy about picking up… To this day, I don’t make my bed and clothes are often strewn on the floor of the bedroom.  That is, until I get mad about something or I’m avoiding something, and then I go into a cleaning frenzy and nobody is welcome to talk to me until you can eat off the floors, counters, sinks and toilets.

Truth be told, since I quit working and focused pretended to focus my energy on the home, it’s gone into a shambles.  I look around it feels like a tornado (particularly two strawberry blonde F8s) have come through and the city decided it wasn’t an area worth revitalizing.  (Seriously, why clean when you get one room done and it’s dirty again before you finish the next.  I know futile efforts when I see them…that is, unless I’m in the frenzied “zone”).

It’s Kyle who takes the brunt of my SAHM mom inadequacies.  He knew when he married me that I’d never make a good housewife.  If that’s what he wanted, he would have stayed far, far away from me.  I think he actually pities me a little.  It’s like taking a hibiscus and expecting it to thrive in the desert (or any plant and expect it to make it a week under my care).  Thankfully, he loves me and he probably has to remind himself daily that it’s temporary.

We are also pretty honest with ourselves that, even though I am at home, the house falls pretty far down on my list of priorities.  My job is to manage Owen’s health and development and, without trying to brag, I’m really good at it.

  • A strength of mine is talking to experts about really complicated systems and then simplifying them for everyone else to understand.  I don’t get overwhelmed by the realities of the below picture and I intuitively understand how each area affects the others.  I have zero interest or skill in biology.  This is just the way my brain works.  In the past, I’ve used the skill to understand food manufacturing systems, apparel construction and multi-million dollar marketing campaigns.  Today, I use it to understand a 23 pound little boy, who by even doctor’s standards, is pretty complex.20130619-152032.jpg
  • I’m also really good at setting goals and helping the team develop strategies to achieve them.  In my opinion, Owen’s doctors and therapist are consultants.  I’m the decision maker and it’s my job to accept or reject their recommendations.  That probably sounds cocky, but I call that advocating and trusting that I know Owen best.  They are subject matter experts, I’m the big picture, Owen, expert.
  • I’m also good at communicating and understand what pieces of information are important to which care provider  (we are down to 7 specialist, 8 therapist, a pediatrician, a respiratory therapist and lots of nurses).  I keep everyone in the loop and let them know specifically where I’m looking for help.  I make the most of each visit; I feel lucky to have really good providers on Owen’s team, but I also realize that it’s my job to help them do their job well.

I know, without a doubt, that I deserve an F grade in my home-making skills, and some days…especially over the last month, I beat myself up for it.  And by beat myself up, I don’t mean I take action…I get so overwhelmed by how bad I am at it that I curl up in bed and get lost in a crappy romance novel instead of dealing with the reality in front of me.  Many days, I feel like I’m out of my element and am completely scattered brained.

And then I take Owen to an appointment and my head clears and I recognize me again.  It’s in those moments, that I realize that I’m Owen’s mom for a reason and that just behind God and Owen’s natural drive, I know that I’ve played an important part of how well he’s doing today.

I take pride in knowing that I helped make this transformation possible:

transformation

Maybe in many ways I suck at being a stay at home mom…but, in this case, I know I am the best woman for the job.  I think the six-year-old me who dreamed of business suits and important business jobs in her future would be proud of where she is today…no business suit (or shoulder pads) required.

 

School – Not Just For Him

I’m a little shocked, but I think it’s actually going to happen.  Owen is going to start school two mornings a week starting the week of June 10.  He will be placed in a typical needs classroom (at the same school that Kellen attends) and have a respite (sometimes called para) teacher specifically dedicated to his needs.

This is a trial.  Owen has to prove that he can be part of the germ factory without needing prednisone or hospitalization.  I’m really anxious.  But I also can’t wait.  He loves going to the school and playing on the playground.  Yesterday he visited Kellen for Kellen’s year-end program in the classroom and checked out the big playground.  Owen will spend his time on the “Little playground” where the equipment is geared towards toddlers, but that didn’t stop him from exploring.

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I’ve been really excited about Owen going to school since applying in January.  I think it’ll be great for him to interact with his peers and to be part of group activities.  I expect it’ll help his development all around.

I knew the program was called Respite.  But, do you know what I never considered?  This program is great for Owen…but really it’s for me.  The county has reviewed our case and deemed that I deserve a break on occasion.  After two years of mostly me being Owen’s care taker, the county is going to help pay for most of the costs for Owen to go to school because they think mom needs it…that’s what respite means.

I do know what the word means, and don’t mean to suggest you don’t either.  It’s just that it hit me like a ton of bricks.  I’m going to have 6 hours a week to take care of me.  I can shower and shave my legs without worrying about Owen have a panic attack (he has a sensory issue with the shower).  Workout.  Run the errands without towing a kid or two along.  OMG!  I can clean the way I like to clean where I make a huge mess and then put it all back together again and I don’t have to worry about stopping for a feeding or accident protection.  For 3 hours twice a week, I won’t have to be feeling guilty about what therapy I should be working on with Owen.  I might even be able to reply to emails and voice mails (no guarantees, it’s only six hours a week:-)).

To be honest, these last two years, I’ve just been going through the motions without thinking much about what I need.  The blog was my main outlet.  There was nothing altruistic about me not thinking about me.  That’s just what happens in life sometimes, you get so focused on what has to be done that you miss that there might be help if you just stop for a minute to find out.

Are you wondering about programs in your area?  Every state is different on what/if is offered for respite care.  Pediatricians, Social Workers, Early Intervention and Schools that offer care for special needs children are all good places to start.  If I learned anything it’s to not assume you won’t qualify.  It’s worth asking.  For us, it was Owen’s level of need and our lack of family in our surrounding area that was most considered.  Also, the fact that we still pay for Kellen to go to school and that I’ve been unexpectedly out of work for two years contributed for the decision to give us a sliding fee rate.

Speaking of respite…Kyle is off work this week, so I’m heading to the coffee shop to visit a friend.  Happy Friday, everyone!

First Day with Ankle Foot Orthotics (AFO’s)

As we continue aggressively (yes, aggressively) removing oxygen from our lives, we are adding in some new equipment for Owen.  This morning, Kellen, Owen and I went to Gillette and had the final fitting for Owen’s Ankle Foot Orthotics (AFOs).  If you’re not familiar with this type of brace, I’ve taken a lot of pictures from different angles so you can see what they look like and have answered a few of the questions that I’ve received about why Owen will be using them.

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Back view, while being worn.

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Front view while being worn.

What is the purpose of AFOs?  AFO’s are used for people who have impaired ankle function.  In Owen’s case, the doctor is hoping that by giving him more ankle support he will better be able to control his body for walking.  To walk, you need to control your hips, knees and ankles at once.  She feels by cutting it down to only two of the three, Owen will start walking sooner.  Also, Owen is showing a tendency to come up on his toes, especially on his right side.  AFOs prevent walking on tip toes.

AFO with no shoes

AFO with no shoes

Does Owen have Cerebral Palsy (CP)?  Owen’s development team is reasonably confident that Owen will not have a CP diagnosis.  At this time, his muscle tone is “essentially normal” in all four extremities.  He has mild increased tone in both of his hamstrings and ankles.  Also, his feet are flat during standing, and as I mentioned above, he favors his tip toes at times.  His doctor feels that by getting his earliest walking in the correct position, through AFO use, there is a chance that his mild tone issues will improve, or at least, not get worse.  She keeps saying, “Owen is a moving target”, which means that she doesn’t feel his tone is fully determined yet.  She is confident that Owen could walk without AFO’s but we are choosing to be aggressive now, in hopes that he may not need AFO;s for life.  From a development and neurological standpoint standpoint, Owen has been diagnosed with PVL, Muscle Weakness, Global Developmental Delay and Impairment.

What is the Process for Getting AFO’s?  In our experience, molds were created through briefly casting the foot, ankle and shins.  As shown here.

Owen getting molded for his AFOs (two weeks ago)

Owen getting molded for his AFOs (two weeks ago)

I was able to pick a fun fish print from a book of many options.  I thought it would be good for summer (assuming it ever gets warm here).  Over the last two weeks, the molds were used to make custom fit, plastic braces for Owen.  Today we went back and the braces were tried on and the final cuts were made and the straps were added.  In all, the appointment was an hour and forty-five minutes because it took about one hour between trying on the braces and making the final adjustments.

Completed AFOs.  Do you love his fish print?

Completed AFOs. Do you love his fish print?

What are Owen’s first Impressions of his AFO’s?  Owen has been doing really well so far.  Within 5-6 steps of hand held walking he had adjusted to the braces and walked comfortably.  When we got home, he crawled and cruised with no complaints.  We will work him up to wearing the braces for longer periods of time, but for now, we are starting at 1-2 hours a day while he’s playing.  The goal is for him to wear the AFO’s during most of his periods when he’s standing, cruising or working on walking.  He will not wear them for sleeping or rest.  We do need to get to the store to buy some more socks that will go higher than the brace.  Amy, mom to the adorable Ailyn Rose has recommended Target store brand socks that are $1.50 each.  That’s a much better deal than the $15-20 AFO specific socks on the market.  Old Navy Triple Roll Socks are another favorite for Amy and Ailyn.

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Owen’s AFO’s are hinged, which means his ankles can flex up, but not side to side. His PT has said, non-hinged AFOs are similar to walking in ski boots, so I’m glad he has the hinges.

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The shin strap is for stabilizing the AFO so it doesn’t move around while he walks. The lower strap is the more functional strap in terms of supporting the ankle.

20130409-121745.jpgBeing only a few hours in, I’m far from an AFO expert, so, PT’s and other’s with AFO experience, please add any thoughts or wearing advice that you have.  As we prepared family for Owen’s braces, I struggled to find a page that talked about AFOs in lay terms or showed pictures from a lot of angles, so I wanted to make that available on ANRC, but I know there are readers with much more advice than I have, so please share!  AFO’s are relatively common in the preemie world and we preemie parents are vultures for information.

10 Lessons I’ve learned from being a Special Needs Mom

It, probably, goes without saying, but that the last year has changed me in many ways.  How I identify myself, my goals, my values and my perception have all changed and I know as we continue down the journey, I will continue to evolve.  Being just a little over a year in, this seems like the perfect time to capture what I’ve learned in the first year of being a special needs/ micro preemie mom
  • Doctors are our advisors, not our decision makers.  They have a lot of impressive credentials and talk in really big words, some of which I’ve heard a hundred times and still cannot pronounce, but most doctors we’ve met will say “no one knows a child like a parent”.  The parent-doctor partnership is critical.  Every patient is unique and, while doctoring is founded in science, practicing as a physician is an art form.  It’s really important for parents to ask questions until they understand diagnosis and procedures so they can feel comfortable with what’s happening to their child.  If you don’t agree, make them sell you on why it’s the best idea and ask what are the alternatives.  Obviously, some decisions are imminently critical and you just have to put your trust into the doctors, but in most cases, it’s okay to put on the brakes until there is an agreement.
  • Good nurses are much more important than good doctors, treat them with the respect and gratitude that they deserve.  On a good day in the hospital, you will see the doctor once.  To see a hospital doctor more than that means something is not going well.  Nurses manage the day-to-day care and comfort of a patient and the family.  They translate what the doctor just said, they bring you special treats like popsicles or warm blankets, they listen to and advocate for the patient, they wipe butts, give shots and IVs, block visitors when someone needs sleep and run around like mad women (and men) but no matter how busy they are, they always have time to give a patient or parent a hug.  No one at the hospital has a greater impact on the quality of care than the nurse and 99.9% of them are amazing,
  • Smile and make eye contact, you never know when someone will need it. While I am an extrovert, I also have deep Midwestern roots and we Midwesterners are raised to mind our own business (at least publicly).  I’m also almost always in a hurry.  These two qualities combined have resulted in me having the bad habit of walking at a rapid pace with my eyes fixed on no one.  However, a few special parents in the NICU started reaching out to me and that’s when I learned  the importance of relationships with those going through similar circumstances.  I started doing the same and have been told by the recipients how important it was to them.
  • When you have no words, a hug and shared tears speak volumes.  It seems, it is human nature to do one of two things when you don’t know what to say to someone going through a difficult situation.  We tend to pull out a cliché (like, “such a roller coaster”) that’s probably overheard by the recipient and starts to feel meaningless.  Or, the much worse offense is to say nothing at all which leaves the (non)recipient feeling really lonely.  Let’s be honest, there are moments in life when there is nothing to say to make the situation better.  Shared tears say, “I hurt with you” and a hug says, “and I am here to hold you up” so much more authentically than any words you can say.  It’s not okay to not acknowledge what the person is going through, but it is okay to acknowledge it without speaking a word.  I will never forget one mom that I didn’t know well saying “can I give you a hug”.  That hug got me through that day.
  • No matter what your situation, someone always has it better and someone always has it worse.  It’s okay to acknowledge and be sad about the bad, but never stop appreciating what’s good in your life.  Without a doubt, the last year has been the most challenging in my life.  I can’t say the cliché,”life’s good, everyone’s healthy…”, but I can say “life is good, I am loved and I love and I have hope and so many blessings”.  There is not a day in my life that I couldn’t say that statement, so yes, there have been some crappy things that I hate happening in my life.  But wallowing in the crap just means your smell bad and have a worse view.  Knowing what’s good in life is essential in swimming through that crap.
  • When someone comes over and your house is a disaster, forget the house and enjoy their company.  Before kids, most Saturdays I took five hours to clean our house.  I now snicker at that thought.  Five hours dedicated to one fulfilling task, what a luxury that I didn’t even know to appreciate. I’d still be really proud to be able to offer that to my guests, but reality today is I’ll do my best to have the kitchen cleaned and a bathroom that’s guest friendly and if they aren’t, I apologize and say, “welcome to our lived in home”.  What I’ve learned is most of them really don’t care and understand completely.  They don’t have less of a good time and so neither should I.
  • Most of the time when your toddler is kicking and screaming about what he doesn’t want to wear, he just needs a hug.  Some really tired mornings, I forget this lesson, but I must say, I can’t believe how many times Kellen has been snapped out of a temper tantrum by a hug.  He’s hurting too and can’t always find the right words.  It’s a lot like the lesson a few above, there are no words that will make Kellen feel better, but hugs are pretty magical.
  • Be open to those that reach out, you never know who will get you most right now.  I’ve been struck many times at the people who I wouldn’t have considered close friends who said the right thing or knew the right night to drop dinner by or had the best ear to listen to me talk.  A good example is one woman who I really only knew in a professional context.  I’ve always enjoyed her company and we typically checked in one or two times a year.  Since I went on bed rest, she’s been really proactive in checking in with me and visiting at the hospital or our house and every time she leaves I feel like she’s walked away with 10,000 pounds from my shoulders.  Interviewing and listening happen to be skills she uses in her consulting profession, so it’s something she’s really good at but I’d have never known that until she started reaching out to me.  She had no obligation to become my friend through this year, but she did and so did many others from walking the dog to flying Cyrus to AZ to sending presents to the boys to leaving notes on CaringBridge. So many people we didn’t know well, or at all, have lifted us up through this year.  You never know who will be there to help, but it seems someone always is.
  • What empathy feels like Empathy is an emotion that I’m not good at allowing myself to feel and it’s something I still work on.  However, now that I have felt empathy from others and seen how good it feels to feel for others, I realize just how important an emotion it is.  I can’t explain it fully, and it’s nothing you say, but to me, empathy is making someone feel like they aren’t alone during one of the most lonely times of their lives.  There is nothing more powerful – not even a hug.
  • Getting through a difficult time doesn’t take strength, it takes work.  “I don’t know how you do it” is a statement I often hear people say.  “It” in this context typically means stay sane or just have the stamina to keep going.   For both, the answer is the same – I work on it every day.  I work on healing, I work on being a good mom, I work on being a good wife, I work on accepting, I work on not settling.  Some days, I can only be a good mom, other days I can do them all, but I work on accepting that too because giving up is not a real option.  I work hard because, right now, I don’t have a choice in much, but I do have a choice in what I take away from “it”.

For anyone who has had their own time of challenge (everyone), I’d love to hear what you’ve learned in your journey.

Owen being sill, December 2011