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:

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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.

 

Owen’s (Third) Letter to Nasal Cannulas

Dear Nasal Cannulas,

It was two years ago on Father’s day that Dad and I were in cahoots and we pulled the ventilator out.  Okay, maybe it was a scary accident to Dad, but I knew what I was doing.  I was through with that vent…well, at least for a week and then I got sick and needed it back, but that’s not the point… the point is, I know when I need help breathing.

Over the last several weeks, I’ve made it abundantly clear to Mom and Dad that I didn’t need help breathing anymore.  I kicked and screamed the minute you touched my face and I proved I can whip you out of my nose and on the floor faster than I can crawl away when Mom is chasing me through Kellen’s floor hockey practice (and that’s pretty fast, just ask any of the onlookers who were giving mom the “wow, he’s a handful” looks of sympathy…hahaha).

I made it as clear as I could to Mom that it was time to call the doctor to have my overnight study, but she’s got this fear of bad news…something about being afraid of jinxing positive momentum.  I mean seriously, she gets all cautious because she’s haunted by that first year, but I keep showing her in every way…I’m just not that same kid anymore.  I’m stronger now and this face is waaaayyyy too cute for a harness on it.  Those dang glasses are bad enough and at least they match my baby blues.

So anyway, this letter is getting a little drawn out…kind of like our two-year relationship…so let me put it to you as simply as I can.

I PASSED!  I PASSED!  Naa Naa Nuh Boo Boo!  I don’t need you!

Oh, and to your little friend pulse oximeter (that stupid monitor that mom punched a time or two…or more).  I quit it too!

Booyah!  It’s good to be a free man.

If you missed Owen’s previous letters to nasal cannulas, you can find them here and here.

Time

Time is a funny thing.

That first year after Owen was born..that time was dog years and then some.  I’m not sure time could have moved any slower.  Each minute felt like a century.

People would often say, “this will get better” and it did nothing for my perspective.  The next ten minutes ahead of me seemed so far away that I really couldn’t see a glimmer of light at the end of that tunnel of time.  It’s not that I didn’t believe it would one day get better.  It’s that time was moving so slow that those days to better were too far away to start thinking about.

The smaller and sicker your child is at birth, the higher the risks for long-term delays and disabilities.  We knew Owen was very high risk in terms of long-term issues.  In the early days of ANRC, I shared a post, Preemie Parent Curse:  The Known Unknowns.  I went over so many questions we had about Owen’s future; would he walk, would he talk, would he eat, and on and on.   The answer to those questions seemed so far away.

I hated the wait.  I wanted predictions.  What was Owen’s future going to be?

And then something funny happened with time.  It went from a snails pace to warp speed.  Thirteen months have gone by since I wrote that post.  I’m not really sure where the time went.  I look at Owen’s pictures at that time last year…just learning to support his own head.

Owen showed off his feet

And now look how far he has come.

See all of the kids lined up around the stadium?  The line goes up inside the stadium and all the way back around to the far right of the photo.

Rounding the bases as the lead runner for the Kid’s Running of the Field at the Minnesota Twin’s stadium

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There is still a lot I don’t know about Owen’s future.  I still fear that other kids might not accept him because he isn’t doing everything they are.  It, of course, would be easier to prepare if we had a crystal ball.  But do you know what?  Whatever my worst fears were a year ago, Owen has already surpassed them.

I received an email from a mom who recently received a PVL diagnosis, she wanted to find some hope.  I replied that nothing I said would probably be the right words for hope, but if she really wanted to find it, she should look at her daughters.  The fighting that they have done in their short life to date…these babies never lose that fight and drive.

The unknowns are still there and they are concerning, but concern is different than worry.

I know that Owen is determined to be his best.  It used to be his best was making it through the day with the help of a lot of medical intervention.  Today his best is asking for his “nau-kie” (pacifier) and “nana” (blanket) after a busy day climbing on the toddler gym.  Tomorrow his best will be something else.

Sometime in the last year, my focus has shifted to what Owen can do instead of what he maybe won’t do.  I know that soon enough, maybe even too soon, I will have all the answers.  He’s growing up on me so quickly (starting school on Monday EEEEKKKKK).

Most importantly, whatever his future holds, I know he’s equipped to handle it.  Yes, Owen will probably have some differences from his peers…but you know what, I’ve finally realized…that’s okay.

In some ways, it has taken an eternity to get to today, in other ways I can’t believe he’s already almost 26 months old.  Time may be the most subjective measurement of all.  It feels different for each second, minute, day and year.

I am not “over it“, but I’m also not wishing time away anymore.

That’s worth something, right?

 

Giving Hope a Try

Can someone please tell me where the month of March went?  I look out my window and certainly don’t see spring.

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Maybe it’s because time is moving so quickly that the seasons can’t even keep up?  (Makes me feel a little less bad about not keeping up with my housework if Mother Nature can’t even keep up).

The best part about March being nearly over is that it’s the month that has scared me the most.  I know it’s silly, but last year, Owen was in the hospital for 29 days of March, therefore I had this horrible fear of repeating it this year.  I wonder how old Owen will be when I finally don’t cringe every time someone sneezes or I won’t fear certain months and days on the calendar.

The fact is, his risks are still high.  Nobody wants him sick and we still have to take precautions, but after the Pulmonary visit last week, we are starting to slowly poke our heads outside of the safety of our house.  I took the boys to a restaurant for dinner…at 3:30 PM.  Owen has started coming in with me to pick up and drop off Kellen at school.  I even talked to the doctor about Owen going to school this summer.  She said the idea makes her a little nervous too, but “Owen’s earned the right to try”.  If he is starting to need prednisone regularly or gets hospitalized, we will have to be ready to pull him, but unless we try, we’ll never know if he’s ready.

Honestly, it’s these moments of hope that make me realize just how much the last two years have effected me.  I’m terrified of hope.  It seems too many times, I’ve hoped and things haven’t turned out as I’d wanted.  My brain bashes all the hope in my heart, but somehow, my heart keeps winning.  It sounds crazy, but when I feel hope, I tear up every time.  In part, it’s tears of joy for what we continue to overcome.  At the same time, it’s tears of fear of going backwards.  Fears of another jinx hanging over our heads.

My favorite words on hope, were written by Keira Sorrells for Papa’s of Preemie’s, I Choose Hope campaign.  She says, “[for some] choosing hope is not a singular moment; it is a choice we have to make over and over again.”  I didn’t know it about myself, until I read it in Keira’s words.  Each time I have moments of my head and heart fighting over if my welling hope is appropriate or not, I think of Keira’s words.

The fears aren’t gone, but the hope in my heart gives me the permission to let him try and that’s what Owen deserves…the chance to try.

Here are a few pictures of him trying life with longer oxygen breaks.

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NICU Friend Visits and Kellen One Liners

It’s been another good week for the M family.

Owen got to play with two of his NICU Nursery 2 friends. Tuesday we went back to Como and had a picnic with Joanna (the August hero) and Isaiah. It’s been a few months since they last saw each other and this was the first time they were both mobile. Neither ever got mad at each other, but they always seemed to want to play only with the toy the other had. Isaiah, who is typically very pacifier particular, even gave Owen’s “off brand” pacifier a try. It was funny to watch them “play”, I think the two will keep Joanna and I busy on our visits. Saturday we had another of the Nursery 2 friends to our house for a visit. It was the first visit since the NICU days and it was really fun to see the two together. These two were truly in the trenches together – they were born 5 days apart – and they seemed to have a special intrigue in each other. I’m no match maker, but she just may be Owen’s first girlfriend. Kellen also seemed smitten by big sister. He ran outside and came back in to present her with a dandelion.
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NICU Follow Up Recap

As I mentioned yesterday, Kyle and I took Owen to his NICU follow-up appointment on Friday. These appointments are with the Neonatologists that work in the NICU and are a more in depth look at nutrition and development than you’d get at a well-visit with the pediatrician. Prior to all of Owen’s hospitalizations for respiratory illnesses over the flu and cold season, the Neonatologists also followed Owen’s lung health, but that is now managed by the Pediatric Pulmonary team.

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Life After the NICU: A Different Kind of Hard

Just a few short weeks after we started dating, Kyle and I had the opportunity to climb our first mountain together. We and six friends went to Peru during our winter break of our second year of grad school. As part of the trip, we did the four-day Inca Trail hike to Machu Picchu. Because I decided to go just a couple of weeks before the trip that came just after finals and then the holidays, I didn’t do a lot of research before we left. I read a few reviews of the hike and basically took away that it was four days to walk a scenic 26 miles.

The reviews were right; the walk is one of the most amazing 26 miles you could see. There is a dessert, lush rainforests, gorgeous mountains sitting in the clouds and really impressive ruins scattered throughout the trail. However, the reviews that I saw left out a few details – important details. For instance it would have been nice to understand that on day two you start out at approximately 10,000 feet and by lunchtime you’re at 14,000 feet where you summit a peak that is aptly named Dead Woman’s Pass.

One of the most frustrating parts of that long morning was the switchbacks. Each time we felt like we’d reached the top we’d turn the corner only see another one and that next one was harder than the last because fatigue started to set. As the day wore on, we started breaking the switchbacks into even smaller goals. “Let’s go 100 steps and then we can stop for a drink of water” after some time we cut the goals back to 50 and, I think, we ended at 25 steps between each break. With each step forward, we got closer to the peak and finally…mercifully…we made it.

Kyle and Tatum at Dead Women’s Pass, Inca Trail, Peru. January 2005.


The proud smiles on Kyle’s and my face say it all. We’d reached a goal. THE milestone. It’s all downhill from here baby!

This picture on the mountain peak in the Andes, reminds me a lot of another time that Kyle and I reached a peak together, this time with Owen.

Owen’s NICU discharge. October 19, 2011.


In both cases, we underestimated the rest of the journey. After lunch that day on the Inca Trail, we started to head down the mountains. We learned really quickly that the burn of climbing up is just a different type of pain than the bone grinding steps as we navigated down. And then it started to rain so the rocks that we were descending were slippery and fog set in so we couldn’t see very far in front of us. Painstakingly, we worked our way down the mountain and finally arrived at our campsite for the night. Dinner was very quiet that night. After eating, we crawled into a stinky tent and wearily joked that the $2000 fine for needing a helicopter down didn’t seem that outrageous anymore. It was a little depressing to know that we still had so far to go. Did we have the stamina?

As I think about the last 14 months (Today!) with Owen, I sort of feel like today we are somewhere on that day two descent. I’m no longer tired from being up all hours of the night to shut off alarms or run feedings every three hours. I do still have to feed him at Midnight, so the nights are late, but I’m also not typically up before 7:30 and some days it’s even later. Feedings have cut from 8 times to 5 times per day, the meds have gone from 15 to 5. Life really is getting easier, we are going downhill.

AND, like on the Inca trail, going down hasn’t been as easy as we imagined. We are fatigued. In the last 14 months, I’ve had one 24 hour break from Owen. I was sick and couldn’t go to the NICU, so it wasn’t a very relaxing break. Like the Inca trail, we are in the fog and can’t see very far ahead. I don’t know what Owen’s outcomes will be, I don’t know if Owen’s going to have an asthma flare up tomorrow, I don’t know what will happen to my career when Owen’s in a place that allows me to return and for once in my life, I don’t even know what I want my career to be. Like climbing down from Dead Woman’s Pass, there are still a lot of aches and pains…why is scheduling a healthcare appointment so difficult? Why does it take so long to get into a feeding clinic? I’m watching my son go backwards and don’t know how to help him and nearly had to beg to get someone to refer us to a feeding clinic and now we wait. Oxygen cords, thank you for what you do for my son, but I HATE you – truly viscerally despise you. I’m sick of tripping over you, getting you caught on everything in the path, carrying the tank everywhere we go. There is no popping into a store, everything is harder. Monitor, thank goodness you are in a padded case or I’d surely have broken my hand several times in aggression towards you. The inhaler to help his breathing makes him constipated and being constipated makes his breathing worse – medication vicious cycles are awesome [sarcasm intended]. We are financially in a much better place than many families going through similar situations, but we did unexpectedly give up half of our income. Our mortgage is a reflection of two incomes and can’t be changed since we bought our house in 2006 and owe much more than the home is worth; our student loans are a reflection of two people with expensive graduate degrees. Each month the savings account gets smaller and is a reminder that eventually, something has to change. Right now we have the luxury to do what we feel is best for our children, but we know that it’s not possible to maintain forever and being in the fog of unknowns makes that a little more daunting to navigate.

This last paragraph isn’t meant as a complaint. It’s really just an assessment. A reminder to us that fatigue is very reasonable and we need to let ourselves feel it sometimes. Unlike the Inca Trail, this is not a four-day journey. There is no powering through this fatigue. Yes, at moments, sometimes 14-month-long moments, powering through is necessary but it’s our job to notice the difference.

Slowly, in this healthy stretch, we are starting to make changes that will help us have the stamina to get through the rest of the journey. Owen now naps in his room two one-hour sessions per day. I get one of those hours to myself and Kellen gets me the other hour. That sounds ridiculous to be a new thing, but if you saw the process of getting him and all his stuff upstairs and then back down, and then throw in that I was constantly watching how he was breathing (monitors tell you when it’s too late, you really need to watch his breathing to know if he’s working too hard) you’d understand why it took this long to get here. Also, Kyle now gets about one hour extra in the office because he’s not doing drop off and pick up. That’s one extra hour that he can use to relax when he’s at home at night. In addition to making daily shifts to our schedule, we’re also starting to make plans to see friends. I may even use up some of Kyle’s airline miles and get on a plane a time or two over the next several months. Hopefully, he will come with me on one of those trips.

I’m sure many of you are saying, “about time” or “duh, how long have we been telling you this” and believe me, we weren’t blind to the fact that we needed a break. But the other facts are we weren’t ready; Owen was really unstable for much of the winter. Leaving him with someone else for longer than a couple of hours was a terrifying thought, for us and the other party. The last two times Owen was hospitalized, both were nearly 911 calls. Even with all the equipment and knowledge that we have and our ability to catch signs early, we were in very scary situations. His respiratory distress often is sudden and severe. Leaving him with someone without the same comfort and knowledge, wasn’t about us not being willing to take breaks. It was about Owen’s safety.

However, like that second half of the second day on the Inca trail, I feel that stinky tent [3+ star hotel please] getting closer. Going down hasn’t been as easy as we imagined, we have weathered plenty of rain and slippery rocks but in this current clearing, we are enjoying some breaks so we can prepare ourselves for the jungles and rocky terrain of day three. At the end of day three, there will be showers and toilets that flush and then day four is a few hour walk with one steep (seriously it’s straight up and down) wall to climb just before you walk out on top of Machu Picchu. It is a true wonder of the world sitting up in the clouds. I know what’s ahead of me isn’t easy, but I also know that not only the end, but also the journey, is beautiful and amazing and so well worth it. Like in the Inca trail, we have each other and a great supporting cast. And like Machu Picchu, I believe if you got there by train instead of trail, that beauty and wonder will be amazing, but maybe not quite as sweet. Unlike the Inca Trail, there won’t be a clear end that startles us with its beauty, but I am pretty sure, if we watch closely, we’ll see it.

Churchill