My Bike Needed A Tune Up

I’ve spent the past year struggling to get back into the swing of things.  The one thing that has been so therapeutic for me – writing – suddenly became an unavailable outlet.

When I look back, I can clearly remember the days I spent starting my blog and sharing my story about Jameson – having a new child with this crazy rare syndrome I had never heard of.  And my mind immediately jumps to the days I spent growing up writing in my diary – and yes, I still have many of them.  (Reading back through my late teenage years and early twenties is something else 😉 ).  My hand-written diaries stop in my early twenties; about the time I started becoming an “adult” and computers started taking over.

My life seemed to be coasting along, and then five and a half years ago I was struck with something I never in a million years would have imagined.  And I turned to writing again.  I was far away from any close friends or family living in this unknown world, and it made me feel better to “talk” about it through writing.  The words craniosynostosis and Pfeiffer syndrome were so foreign to me – and to my family, who were all so far away wanting the same updates and answers.  So, I started a blog everyone could keep up with.  I also wanted a document for other new families to be there, so when they were given the surprising news their baby was going to be 1 in 100,000 they would have a someone to relate to and know they weren’t alone.  Because in those early days we searched for others out there.

Fast forward to today, and I would’ve never guessed all the people we’ve met through social media and the groups online that are filled with parents and children also with this super rare syndrome – or one just like it.  And I certainly never imagined that some random Joe would take Jameson’s photo and turn it into a meme.

The pros and cons of the internet – it can bring SO many people together, but it only takes seconds to tear someone apart.

At first, I hated the meme for the obvious.  Because of the cruelty of making a stupid joke out of my son’s appearance.  Because of the ridiculous comments people made about both me and my son.  Now it just bothers me because it’s still there.  Each time I must take the time to fill out a copyright violation.  Don’t get mad wrong – I gladly do it for the sake of fighting for my rights and for my son.  But time is a precious commodity these days.  I know it’s out there; I’m not surprised anymore.  But the fact I’m already fighting for normalcy mothering a medically complex child makes this such an unnecessary added battle.

Before it used to be our life before Pfeiffer syndrome and our life after Pfeiffer syndrome.  Now, it’s like our life before the meme and life after the meme.  We have connected with so many more people (craniofacial families or not) after the meme, but there are many that have left or stay away because they are worried that they will have their image stolen and used like Jameson’s.  I’m a big girl, I get, to each their own – but I’m still human so yeah, it sucks too.

Then throw a pregnant mama (me) into all that, and an emotional takeover is bound to happen.

I had a hard pregnancy.  I told myself for months that it was the physical difference of carrying twins (and this is true, this was by far, the most physically challenging pregnancy I had).  But, the truth was I was having just as difficult time emotionally.  I really didn’t know at the time there was such a thing as ante-partum depression.  And it took me a while to admit that I was living with it.  I struggled letting go of worry and stress each day.  I found out I was carrying twins at 11-12 weeks.  Identical twins.  What they say is a spontaneous occurrence.  I know much of like is spontaneous, but at the time it just stuck in my head because Pfeiffer syndrome is spontaneous too.  From that point on the worrying didn’t stop.  There is so much more than having just identical or fraternal twins that go into it all, and I was a wreck.  I wasn’t negative (maybe I was though – others can probably attest better than I), but I never wanted to let myself feel too happy in fear that I would lose one or both of the babies, or something would go terribly wrong.  And my response was always the, “Well, I’ve had one baby that was 1 in 100,000, everything is a possibility”.  I knew that I could so easily by the “1” for any scenario with the twins.

So here am, having one of the hardest years, and I can’t write.  My therapy; one of the things that has always helped me find comfort and peace was blocked for some reason.  I think subconsciously I was forcing myself to sit on the bench and take a time out.

I sat down and started to write many times, but I could never finish.

A very special memory from this last year is when Jameson came running in the house, proudly giving me this bouquet of flowers he picked just for me.  There were so many beautiful aspects to this gesture that lifted my spirits more so than they had been in a while.

I tried to write about this too.  And I started.  But I didn’t finish.  I have a bunch of half written thoughts like this from over the year.

Why was it so hard for me to get back up and write again? 

What was blocking me?  And it wasn’t just with writing.  I found myself without any time to put into the many things in life I that I love and enjoy.  Writing, exercise, arts and crafts, the non-profit we had just started…

Now, I say I found myself without any time.  And we all know that no one “has time”, we make time.  Bottom line – that’s Adulting 101.  But here I was, “without any time”.

So, why was it so hard for me to get back into the swing of things?

It’s funny to think back when you were a kid, learning to ride your bike.  And no matter how banged up your knees and elbows got, you kept getting back up every time you fell off.  That rush and excitement that came from simply getting your feet on the pedals and riding was thrilling, and somehow it no longer mattered how many bumps and bruises it took to get there.

That’s life too.  The thrill of living makes us get up and try again when we fall, because we know how good it feels to ride again.

But the time we’re well into adulthood you can’t even count how many times you’ve fallen off that proverbial bike.  Sometimes you stop thinking about it entirely, because just the thought of counting is exhausting….Because if you do think about it, you’ll realize how tired you actually.  This is the point as adults we either get back on the bike or choose to park it in the garage for a bit; sometimes, we even let it there for so long it starts collecting dust.

At age 37, I just turned 37 so we’ll say 36.  At age 36 I am now a wife, mother, daughter, friend, respiratory therapist, soldier, co-founder……I am always wearing one of these hats.  I haven’t been just me, AliceAnn, in a while.  It’s even a little weird hearing my first name because no one calls me that anymore.  I’ve said previously that sometimes the hardest part of this journey for me has been when my heart and head aren’t in sync together.  The things in life that I love doing and that have been so important to me didn’t change.  But for some reason, here I was with my bike parked, starting to collect a little dust.

There are times your heart needs to catch up to your mind.  Sometimes in life we know what is for the best, but it hurts our heart to follow through.  This has happened to me a few times with the medical part of this journey.

But there are other times your mind has to catch up to your heart.

My mind was working hard dealing with, well – life.  My heart powered through each day.  No matter what, I still woke up each day and counted my blessings, grateful for my life and those around me.  And grateful for all the hats I get to wear, because I do love wearing each and every one of them.  My heart kept me focused on my long-term goals, even if my mind had to take a couple detours short-term.

I think I subconsciously blocked all my normal outlets as a way of forcing myself to dig deeper.  And that’s ok, because when we have to dig deeper we bounce back farther.  Sometimes it’s totally ok to let your bike collect a little dust.  For me it was life’s way of letting me know that I needed to take a break – and while it seemed like my bike was collecting dust it was really getting a tune-up and upgrade.  I have a lot more room now to fit both myself and all my hats.

So, if you have ever found yourself just feeling disconnected, don’t really know why, and are having trouble getting back into the swing of things, don’t be too hard on yourself.  Keep trying and keep your long-term goals close to your heart.  Sometimes parts of our body and soul just need a little R&R so we can become a better version of our self.  Keep the faith and you’ll end up with a bigger, faster, shinier bike to ride.

3 thoughts on “My Bike Needed A Tune Up

  1. Hi AliceAnn.
    I read your article and there were so many things I could relate to. I have been reading your blog posts and followed Jameson´s Journey on Facebook ever since I saw a beautiful picture of Jameson when I was surfing the internet. I fell instantly in love with this beautiful boy of yours and love watching his pictures and your story of the whole family. I cried when the beautiful picture I had first seen was turned to cruel meme on the internet but admired how you responded. I have learned so much of Pfeiffer syndrome from reading your blog. I am an pediatric nurse and worked for many years in the Children´s hospital in Iceland. I have retired now due to health problems but being retired have finally given me time to take out my own “bike”. Thank you so much for giving me the opportunity to watch and read about Jameson´s journey. I hope that everything will go well with your pregnancy. Having twins is a wonderful experience ( I have twins boys ) My best wishes to you and your family.

    1. Thank you, I actually teared up reading your message! 💓. The pregnancy went well, delivery went great and only twin A needed about 6-8 hours in the NICU – the twins (boys as well!) were born April 28th!

      1. Congratulations to you all. I am so glad to hear that everything went well <3 Thank you for letting me know.

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