Dad’s First Post

Hello everyone,

I am James and I am Mira’s dad.  This is my first post, so excuse me as I clumsily fumble my way through trying to talk about things that I don’t yet understand and/or am basically unqualified to talk about on a medium on which I have basically no experience – neither as a contributor nor audience member.

Becoming a Dad is a hell of an experience.  It is a raw, exposed, intimate, vulnerable, and powerful version of reality and I would be lying if I said that I am the same guy now that I was a year and a half ago.  I had great examples of what a Dad is supposed to be while growing up, and I still do, and I am forever grateful for that.  In hindsight, it seems like one of the most important things that a good Dad does is prepare you to be a good Dad.  I hope that I am living up to that, and that I will continue to improve.  So with that, I will try to talk about Mira and what being her dad means to me, and how Nikki and I journey through parenthood as a couple.  Nikki may talk more about the medical side of what is happening with Mira than I do, but that is because she’s a lot smarter than me.

Finding out you are pregnant is a bit freaky.  When Nikki called me to tell me her suspicion, I was actually with my Dad helping him with some project (my Dad and I are project people.  I grew up tagging along in the garage or yard or wherever, providing labor and questions.  My Dad was infinitely generous in giving me tasks and the courage to figure things out).  Nikki said, in a shaken voice, that she thought she was pregnant and I needed to come home.  So, I awkwardly told my Dad I needed to leave, and got out of the door before he could ask too many questions.

The drive home was a bit hazy, and it was the first of many thousands of drives home that are hazy.  I never understood people who talked about the drive home as a place to decompress, but I do now.  Anyhow, this drive home was a blueprint for many later road experiences that would help me get a few minutes to figure out how I was going to approach a situation when I arrived.  On arrival this time, I walked in and Nikki was standing in the hallway with a pregnancy test.  We hugged, I told her we would be okay because we were engaged anyways so whatever, we kissed, then we watched TV.  The next morning we went to her doctor to confirm, and by the end of the appointment we were excited.  I think we called my sister to tell her, and told her to not say a word to my mom.

We told our parents, which is its own story altogether, and slowly we started down the road of being pregnant.  It was a pretty normal pregnancy, no red flags.  Genetic tests were fine, baby was moving a lot, mom was sick here and there, etc.  During the pregnancy, we also decided to make things exciting by fixing up and selling my condo, buying a new house and moving, getting married and going on a honeymoon, buying a new car, sending Nikki to grad school, and a few other major life events that I am sure I’m forgetting.  Then, Mira came.

From the moment she was born, she was beautiful.  She had perfect little fingers and toes, a perfect little belly, perfect little arms and legs, perfect eyes, a beautifully perfect little head of soft brown hair, and a really perfectly curious look.   There were no indications of any sort of problem.

Those first few days of parenthood when you are in the hospital are something else.  A precious time of love and learning and terror and being bothered.  You are instantly protective of this little creature that has already kept you awake and cost you money and cannot do anything to help out.  You anxiously await bowel movements and breast feeding, and as the non-Mother in the equation, you make a lot of trips to the water machine and cafeteria to get her what she needs.  It is a pretty solid little vision of what life will be like when you get home – except without all the staff.

For us, in hindsight, I think we could probably look at Mira’s feeding experience at the hospital and maybe see a little sign of a problem.  Mira had a hell of a time learning to latch, which we later learned was likely a tone issue (Nikki talked about tone so I’m not going to).  As the father, all I could do was sit back and try to think of alternatives to breast feeding and do all I could to encourage Nikki to do whatever she felt was right.  That being said, lactation consultants are pushy and have a myopic view of infant nutrition.  Breast may be best, but only for those that can make it work.  Eating is best – just try to get your baby to eat.  From my perspective, the lactation folks meant well but they put a lot of pressure on something that mothers do not have total control over, and that often is an economically limited option for working mothers.  In our case, the plan was for Nikki to stay home so we had the option, but that is not the case for a lot of moms.  And, I also observed – not only with Nikki but with a slew of other new moms – that breastfeeding HURTS despite what the lactation people say.  Its normal for it to hurt, its not normal to make people who are scared and tired and inexperienced feel bad for having nerve endings that fire back pain messages when they get bit in the boob.  Anyways… (sorry for that, and I am grateful for the lactation consultants).

After the hospital, and after we got home and started to settle in to our new lives, we experienced parenthood as all parents do – one day at a time.  Routines routinely change, growth is carefully monitored, bowel movements are frequent and monitored, bath times are adorable, and the constant eye for milestone achievement develops – and in our case, develops concerns.

For the first few months of a child’s life, most of them are pretty much the same.  They eat, they sleep, they poop, they cry a bit, repeat.  Then, they start to do other stuff.  They start to hold their heads up, they start to reach for things, they start to attempt rolling over, and a bunch of other stuff.  As these other events started coming due, we started noticing that Mira wasn’t hitting them.  So began the late bloomer/something else discussion.

Before I go any further, I want to give Nikki credit for Mira’s life, progress, and care.  I couldn’t possibly state how incredible of a mother she is, and I couldn’t possibly overstate how much of a shark she is in terms of seeking out information and advocating for our child.  As Mira began missing milestones, my first inclination was to say “oh well, she’s a late bloomer and is on her own schedule.”  And, not only was I saying that, but family members were, her doctor was, and folks that we ran into were as well.  But Nikki had genuine concern.  She spent countless hours googling the symptoms that Mira was exhibiting, and trying to figure out what was really going on.  We started seeing more doctors, bigger and scarier possible diagnoses kept falling out of the mouths of these people who had seen Mira for all of 20 minutes, and Mira started going to therapy.  I have learned from Nikki that as a parent, you are the voice.  Your child’s doctors may care, and they may be great at their jobs, but the parent is the voice and the advocate, and without their push – nothing will happen.

Over time, we started sitting more comfortably in the booth of cerebral palsy, and gravitating towards that label for Mira’s diagnosis.  While it could still change at this point, that is what we and her therapists are calling it at this point.  As a super rough explanation of what symptoms we see in Mira, here are some of her physical affects:

– Mira cannot hold her head up at 16 months for more than a few seconds
– Mira cannot sit up on her own
– Mira’s hands do not grasp objects with ease, and she lacks any fine motor skills in manipulating objects
– Mira cannot bear weight on her legs
– Mira cannot feed herself

There are other affects that are more personal to her but which we dote over on a daily basis, as well.  These things aside, she is also one of the sweetest beings to ever grace this ugly planet.  Mira is a happy, smiling, curious, intelligent, emotive, and loving child.  She provides a ray of light to anyone that meets her, and I routinely catch myself staring at pictures of her smile and beautiful eyes throughout the day.  She is stunning, she is perfect, and she is my daughter.

As a Dad, I mentioned that I have been opened up to a “raw, exposed, intimate, vulnerable, and powerful version of reality.”  That is an understatement, but its the best I can do right now.  I start my day, as most people do, asleep.  I sleep lightly now because I need to be listening to her in case if she needs me in the night.  I then wake up quietly to get ready for work, because I do not want to wake her too early.  Then I get her up and get her ready for school.  I pick her up gently because holding her is difficult and she is fragile.  I feel her small and weak body weigh against mine as I carry her in to our room to watch me get ready.  She watches adoringly, smiling as I sing to her, laughing as I dance around.  I then pick her up again to start getting her ready.  I put her in the cutest outfit I can manage, comb her soft hair a little, and act disgusted as I change her diaper – much to her amusement.  I then pack up her bag, place her gently in her carrier, and take her to school to watch her light up with joy as she sees her classmates and teachers.

Then, I head on my way and wait another 9 or 10 hours to see her again.  When I get home, she is with her mommy, and she lights up as I enter our cozy little house.  Then, we play and read and watch tv and listen to music and eat until its time for her to go to bed.  If I am lucky, I may catch her doing some Daddy-Admiring from the next room.  And that is our day.  Never before could I have imagined the bliss of routine, but now I love it and want nothing else.

When routine gets broken for us, it is difficult.  In our case, routine gets broken because of doctors appointments and difficult conversations.  When things are moving right along, I am generally just focused on how cool Mira is and what we are going to cook for dinner.  When we have some weird hiccup, my focus changes and becomes much more difficult to process.

In December, for example, we had a number of life happenings.  Mira started school, my grandpa passed away, Mira got sick, Mira had a swallow study that had some negative findings, Mira had a bad allergic reaction, and maybe one or two other things I am subconsciously blocking out.  I went a solid two weeks of crying every day – which I NEVER do.  These sessions were primarily during my drive home – as I mentioned earlier.

I don’t know what is normal for a parent of a child with a disability, but when something happens that makes Mira’s issues jump to the spotlight, I can’t help but extrapolate her condition over the rest of her life.  As we learned that her epiglottis was basically non-functional, and as she got sick and we had pneumonia fears because she isn’t physically capable of coughing hard enough to break up or expel anything in her lungs, and as I held her little naked screaming body while she got chest x-rays and a catheter, I couldn’t help but carry those moments forward thinking of who will be there to hold her when I cannot?  Who will be her friend when she and her peers hit the age where they start to realize that she is different?  Who will help feed her if she can’t learn to do that on her own?  Who will love her with the unfailing and ever-dedicated love of family, in the way that Nikki and I have experienced with our own families?  And, who will be in love with her when she searches for the emotional fulfillment that she has seen between her parents?

It is when I pick up those questions, for my daughter, that being a Dad breaks me.

I am tough like my Dad.  I am smart like my Dad.  I am dedicated and loyal like my Dad.  I am honest like my Dad.  I am loving like my Dad.  I am reliable like my Dad.  And, I seem to keep the hard moments, the weak moments, and the worrisome moments to myself, like my Dad.

I, like him, take those moments when life drops down like a ton of bricks, and stand right back up and keep moving.  Is there another choice?  I try so hard to be rational and to step back when its not my turn to talk, or when it may be my turn, but I don’t have anything good to say.  As a Dad, I am terrified of what the rest of my daughter’s life will look like, but I am going to be a real son-of-a-bitch if anything gets in her way, and I will do anything I can, forever, to teach her that there’s nothing she can’t do, there are just things she hasn’t figured out how to do yet.  I don’t care if her arm can’t bend with control and her hand can’t grip properly, we will find a way to teach her to cut a dovetail or play an instrument or whatever it is that she wants to do.

At this point, I’m starting to ramble.  But, I want to leave my first post with this, which I already said once: Mira is stunning, Mira is perfect, and Mira is my daughter.  You are the parent you want to be.  You have the strength to be the parent you need to be.  And you have no choice but to be the parent you are.  Love your child, and all the other stuff will happen because you will recognize it has to and you will work for it.

As an aside, I really enjoy woodworking and I’ll be posting some pictures and updates on projects as I work on them.  I don’t know why I love furniture so much, but I do, and our house is increasingly full of it.  If you have an interest in any piece I post, lemme know and I’d love to make one for you.

And, thank you.  Nikki and I have a beautiful life together.  We are in love, we are in love with our daughter, and we are in love with our lives.  Everyone has struggles, and we are learning to live with ours.

Be kind.

7 thoughts on “Dad’s First Post”

  1. You are such an inspiring family. Thank you for giving us a glimpse into your lives. I still remember Nikki’s concerns in the beginning, and everyone (me included) thinking there was nothing to worry about. Her persistence and advocacy for Mira is just amazing. Mother’s intuition. Keep being awesome, all of you! ❤

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    1. You’re so sweet, thank you!! I definitely thought I was crazy for several months there! So glad we can share with you (and anyone else interested). Thank you immensely for your support now and from the beginning of this journey!

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  2. Well that does it. Lying in bed with tears in my eyes, because damn. You are my little brother, and my heart is so proud of you. I’m finding myself to be awkward with words right now, and I’m so thankful you and Nikki have started this dialogue. Keep writing, I’m reading. XO

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  3. Thank you for sharing your story. I also had a daughter that was born with special needs and it seemed like there was a new “problem” every day or at least every other day. We cried every day for the loss of the daughter that we were never going to have. That was 19 years ago….reading your post has brought back a lot of memories and sadness but also joy and happiness – Oh how we loved our sweet daughter!!!! While she may not have been “perfect” she was perfect for us. It was finally determined that she was not going to live and she died when she was 5 1/2 months old. My heart still hurts…..there is a hole that will never heal….there is a piece of me that died when she died.

    So, thank you again for sharing your story…..it’s a beautiful one. Mira is beautiful and you are great parents. I cannot find the right words but I will also be reading and following. Blessings to all of you!

    Liked by 1 person

  4. Beautifully written, James, and I pray that you will have peace and joy over this precious life you have been entrusted to love and protect.

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  5. James,
    Your writing is so honest, so thoughtful and loving. I am moved by it and will re-read it tomorrow. You and Nikki are such wonderful parents. Mira could not have more going for her and you both will provide all the best in her future. I loved the part about your Dad. He is the guy with all those qualities!
    Steve

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