Glasses and Genetics


We recently learned that our oldest – Ezekiel – would need glasses.  It’s taken me some time to process this, and I’m surprised at my internal response to this need.  At first it didn’t phase me, and quite honestly it didn’t surprise me at all, not because I thought he was having trouble seeing (I didn’t pick up on any signs) but because I’ve been wearing glasses since I was 2.  Yet the closer we came to actually ordering and picking up the glasses the more conflicted I became.

Glasses are now going to be a permanent accessory for Ezekiel.  From now until he dies he will need to wear glasses.  This is huge, and maybe I think it’s huge because I absolutely hate wearing glasses, I hate that I have to wear glasses to see, I hate picking out glasses and I don’t enjoy them as an accessory.  To clarify, I love being able to see and I am grateful for such a tool that allows me to see clearly and I’m grateful for healthy eyes but I still hate glasses.  I hate even more that my son is having to wear glasses at such a young age.  I’ve been processing this for a while and asking myself why I hate it so much.  I mean, it’s really not a big deal at all and I shouldn’t be making it one but I just couldn’t shake the disappointed feeling.  People’s first response when I tell them that Ezekiel needs glasses is: there are some really cute kids glasses, he’ll be so cute!

Yes, he’s cute in general and glasses do add another level of cuteness (he could seriously be a glasses model) but it wasn’t just the physical appearance that I’ve been processing and I was trying to put my finger on why.

Yesterday I think I came to understand why.

Genetics.

We all know that when you have children you pass on certain traits.  When talking about evolution, passing on traits is the reason plants and animals procreate.  The thing is, we really only want to pass on the good traits especially when it comes to physical traits.  We also all know that we can never just pass on the good traits, we pass on so many more things.  Now, I’m not a genetics expert, in fact I know very very little about genetics (I really should know more) but I do know a few things:

  1. When a child is conceived they receive 23 chromosomes from you and 23 from your partner/co-creator.
  2. In most cases nothing goes wrong with that.
  3. In other cases there’s a chromosome missing or an extra chromosome that sneaks in.
  4. In still other cases you or your partner (or both) pass on some form of mutation in any of those chromosomes.
  5. In still other cases a mutation just “magically” appears.

I know many stories of all of these situations and I am one such story.  I have a genetic condition that is the result of a “magical” mutation.  I have Marfan Syndrome which is an autosomal dominant condition meaning you only need one copy of the defected gene to have the disorder.  The way you receive that copy is from one of your parents – unless it’s not (like me).  My mutation just happened with absolutely no family history but I have a 50% chance of passing it on to my children.  I’ve never cared about passing on my gene in theory.  When conceiving and carrying my children and even now I have the option to have them tested for this mutation.  I’ve always chosen not to because at this point it changes nothing.  Having said that I am in constant wonder and always looking for signs that they did receive that mutated copy of my gene.  So far, other than having a bit fairer skin then the typical mixed race child they really have very little physical traits that associate them as my children and I’ve always taken that as a sign (and hoped it was a sign) that I didn’t not pass on my mutated gene.

Until now.

Now I question it.

Now I wonder.

Now I’m on full alert.

It’s unknown if astigmatism is genetic but it is known that the chance of astigmatism is higher in a person with Marfan Syndrome.  Of course astigmatism is also prevalent in the general population so it’s not a good sign of Marfan Syndrome but for me it places a check mark on that mental list I have going of physical traits of Marfan Syndrome.  Up until now that list has been blank. Now I find myself wondering and running through the possibility and coming up with imaginary scenarios.

So yes, glasses is not a big deal in reality but to me it means just a little bit more.

Thankfully though, Ezekiel can see much better and in the end that’s what really matters here.

 

 

Who I am…

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On July 13 I made a decision to take a social media break – at the time I only had Instagram.  It seemed like a decision made abruptly to those around me, but in truth it was a decision I had been contemplating for weeks if not months.  I didn’t plan to delete my Instagram app on July 13 but I had come to a place physically, mentally, and spiritually that I had had enough.  Enough of what? I actually wasn’t sure and for the past two months I couldn’t put my finger on it.  I knew that I felt God pulling me towards this break, to take time to focus my energies elsewhere (more on Him perhaps?).  So early in the morning in the midst of scrolling Instagram I exited out of the app and deleted it in the same breath.  Right after doing it I was in a bit of disbelief – did I really just do that?! Then the next thought – now what?

Well the summer went on, I did more soul searching, praying, reading, listening and honestly I felt no answers.  The first week and a bit I really missed it but after that life just went on and I barely thought about it.  Every so often I’d do a quick soul check and pray about getting it back but I never felt released to do so and I was perfectly OK with that.

Then a few weeks ago I decided to get Facebook back – if you know me you know this was a huge decision for me.  I’ve made my strong dislike for Facebook known, but it’s time to start getting rid of some baby gear and clothes and so I decided to get Facebook purely for the buy and sell groups and Varagesale.  I didn’t add any friends but several people found me, and slowly my friends list grew.  Then I joined a few Young Living groups and began to love them! Last night after a lot of debate and deliberation with myself I decided I would add all the people I knew that popped up on my suggested friends list.  I had this sudden urge to connect.  Similarly, today I re-downloaded Instagram and felt such a peace about it. Up until today I hadn’t fully known why I felt so strongly about deleting Instagram and although I had tried a few times to write about it and sort through my thoughts I never felt released to do that either.

Today though I finally feel like I have some clarity, and I feel released to write again.

At the time I didn’t realize how I was feeling – isolated, lonely, lost, trapped, no energy, lack of motivation.  I’m reluctant to say I was depressed – maybe it’s pride but truly I don’t feel as though I was truly depressed, I just lacked insight and that was bothering me and manifesting in depressive symptoms.  When I deleted the app I felt as though I had very little community that was true and real and I didn’t want to replace true community with false community.  Here’s where it gets good – today I had this amazing realization that ALL community is REAL community.  Online or in physical form – community is community, people are people.

I spent the last two months bouncing between trying to grasp physical community in full force – planning something several days of the week and being utterly exhausted from overbooking us and dealing with a baby that needed to catch up on sleep.  So one week I was a social butterfly, the next week I was a hermit.  Today I realized that I just needed to accept the place in life that I am and stop pitying myself and wishing I was in a different place. It took me deleting Instagram for me to be able to do that.  Now that I have it’s time to embrace all of who I am:

A mom of two – one being a baby that needs ample amounts of sleep.

A self proclaimed homebody.

A woman recovering from the most exhausting and taxing 2 years of life physically, mentally and emotionally.

A wife needing to connect and stay connected to her husband in a new season of life.

A friend who desires connection in all forms and desires to give that same connection back.

A beloved daughter of the King and member of His Kingdom.

I seriously feel so much more at peace, with who I am, where I am, and the communities I belong to.

What are you being challenged with?

 

 

Letting go…

I am now 23 weeks pregnant and some things have changed for the better.  All of my physical ailments are still present and mostly worse – so no good change there.  I was reflecting this morning how much this pregnancy has humbled me.  My fantasy for my second pregnancy before becoming pregnant was that I would be a beacon of health, that I would be in tip top shape and sail through a second pregnancy.  However, this pregnancy has been the exact opposite.  I went into it still not healthy from my months of health issues that were happening this past year (that are still not figured out).  My first trimester consisted of constant nausea and exhaustion resulting in me sleeping the majority of my free time away.  My joint pain started extremely early at 8 weeks and has only progressed and worsened, resulting in me being unable to do much in terms of physical activity.  Simple tasks like laundry, house cleaning, grocery shopping or errand running bring on types of pain I didn’t know existed.

So, this pregnancy is not what I had imagined, yet it is teaching me and pulling me in ways that I really needed.  I am learning that despite what I think I am not an island to my own.  I cannot possibly do everything by myself, I truly need a village.  I have had to ask for help and accept my limitations so much and so early on.  I have to rely on my husband to do things like take out the garbage and carry the laundry up and down the stairs.  He’s had to make and clean up meals far more than he’s used to.  I have had to ask for help from all of my physicians – suggestions on how to just live with a little bit of quality of life (and they have been excellent).  I have had to sit down with my manager numerous times and ask for modifications in my work – schedule and duties and she has done it willingly and with so much grace and understanding.  I have had to lean on God like I haven’t had to in so long (this is really good for me).  When someone is over and they ask if they can help I am eager to pass off tasks instead of decline and do it myself.  I have had to settle for “good enough” instead of “perfect” when it comes to my house cleanliness.

So no, this pregnancy is so very far from what I desired and dreamt about but it is absolutely everything I need in my life right now.  It’s so easy for me to get wrapped up in accomplishing everything alone, I’m an independent person through and through.  This year has been a full year of struggling with my health and it’s taken this pregnancy for me to let go of the guilt and disappointment of it all.  Of my health plummeting and with it my weight increasing and activity decreasing, of not being able to accomplish everything I want to each day because of pain and exhaustion, of struggling financially because I can’t work over full time like I did in 2015.  I’m letting it all go and embracing the community of people that surrounds me that desires to help me.

We all need a community to lean on and I’m so very thankful for mine.

Truth

If you are a woman who has had children, or anyone who has known a woman while she was carrying a child then you most likely know that the task is not an easy one.  It’s not all fun bump pics and planning nurseries.  It’s exhausted days, sickness for weeks (or months), growing out of clothing, adjusting to lots of new weight and a new centre of gravity, it’s painful kicks to ribs and cervixes, running to empty your measly bladder every 10 minutes, it’s new sensations and worries about each one – and the list goes on.  Don’t get me wrong, it’s also joy, expectations, dreams, anticipation and feelings of love like you’ve never had before (spoiler alert that love intensifies with every single day).

Yesterday I was having a conversation with a co-worker about my pregnancy.  She was wondering how I was feeling, I gave my usual response of a shrug and “not to bad actually” and then I said, “I actually don’t mind being pregnant at all.”  See, being pregnant with Marfan Syndrome poses some risks that aren’t always present in a healthy woman’s pregnancy and it also means that my joints have a much harder time adjusting to the extra hormones and weight that my body accumulates.  Most people think I’m crazy when I say I don’t mind being pregnant because they see me waddle around like I’m 40 weeks pregnant but the waddle starts around week 10-12 because my hips and my pelvis begin to become painful.  Usually the pain increases every 2-3 weeks and I mentally take about 5-7 days to adjust to the increase and then life is fine again.

Yesterday, however, I came home after work with pain that was normal and by the time I got into bed at 6:45pm I could barely lift my legs into the bed.  My pain had not only intensified this time but I began to have new pains that I had never experienced before.  I tried and tried and tried to get comfortable and finally fell into a very fitful uncomfortable sleep.  I woke up at 1:30 right on schedule with my bladder, and I couldn’t fall back asleep again but instead of it being simple pregnancy insomnia it was because I was still in so much pain.  Then I let the pain do something to me that I never let it do, I let it get to me mentally.  So I lay in bed last night going through all the what ifs in my life right now.

  • What if I can’t adjust to this pain this time?
  • What if the pain continues to get so bad I literally can’t walk?
  • What if I really do have to stop working early?
  • What if my last echo (on Nov 1) shows really bad news?
  • What if I have to have open heart surgery while pregnant or worse while I have a NICU baby?
  • What if I can’t carry this baby to full term?
  • What if we can’t pay our bills?
  • What if……

Honestly, it was ridiculous! Yes those are all risks of my pregnancy but as of right now they aren’t imminent risks (aside from the pain) and they aren’t risks I ever overly stress about.  As I lay in bed worrying about my ability to overcome my pain I let my mind get the best of me and finally I had to just yell at myself to STOP being so ridiculous.

I made myself remember the truth that I know:

  • This baby was conceived and given life for a reason beyond my ability to understand.

If I truly believe that (which I do) then I have to believe that every struggle along the road of bringing this babe Earth-side is not only worth it but also possible.  I also have to believe that life will work itself out, every detail will fall into place and every “what if” will fall to the wayside.  It might not be how I would like it to happen, and it might come with even more struggles but it WILL work out.

I wrote this all out, not just for my own processing, but also as a reminder to whoever reads it that life works itself out.  Whatever struggle you are dealing with – surrender to the process and remember that the end will come eventually, it’ll be hard and strenuous but it will be worth it.

Busy but Slow

Wow it’s been three weeks since my last post! That little break was unintentional.

I’ve been feeling life shift the last few weeks and I’m excited about it – spiritually, physically, mentally little changes are happening.  It’s an organic movement – it’s the ebb and flow – it’s the natural trajectory of my life.  The garden is complete, the work from the garden is also done (more on that this week!).  The mornings are crisp and the days are cool.  The leaves are turning and the pumpkins are everywhere.  I crave books and coffee in front of the fire.

This is fall.

I’m so enjoying the fall, and especially since my schedule has calmed down a bit.  The thing I’m most learning in this new season of life is that even if my actual schedule changes to not look as busy – I still keep myself crazy busy.  It’s not a great way to go about life.  I’m addicted to busy, mostly because I can’t handle having a to-do list.  Yes I love lists but as soon as they are made I feel the need to complete them.  I’ll take on a task to completion every time.  There’s no slow moving through life with me – it’s finish one thing and on to the next.  I can’t handle boredom.

Yesterday I was reflecting on the difference between being hectically busy and just being busy.  I really think I am the one who sets that boundary.  Aside from my work schedule, I create my busyness around me.  Sure I have a to – do list but even when I cross one thing off I then add another.

  
This fall I am learning how to function in a slow but busy life.  I’m taking the time to prepare nice meals.  When my toddler is acting out for no reason I’m putting down my task and bending down to look him in the eye, kiss his pouty lips and take him up to his room where we can sit and read a book or do a puzzle in complete peace and quiet  because I now know that he just needs a moment of calm, quiet and peaceful play with his momma – that task can wait. I’m making myself a cup of tea and sitting down to read for 15 minutes in the middle of my day to recharge myself and listen to my mind and body.  I’m splitting big tasks up into little pieces (I’m revamping our office but doing it 30 min at a time) instead of becoming completely engulfed in the task.  I know that whatever “can wait” is a mantra often used by momma’s to justify the guilt that can come with not keeping up – and I’m finally understanding that piece of advice slowly.

So I’m still very busy but I’m working on taking out the hectic part of busyness.

Pushing Through

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It’s that time in the summer that I remember from last year.  When I get tired of all the heat, when I get a bit lazy with all the gardening and yard work.  This year on top of that I’ve been sick for over a week and I’m exhausted from all the work.  Yet I couldn’t really imagine it any other way.  Last night my husband basically begged me to stay home from work today, he said he would match my wage at work if I would just stay home and rest.  Although I really appreciate that he notices how hard I work and the sacrifices I have to make, I actually enjoy going into work.  I love my job and I’m not feeling sick enough to stay home – I will push through and this too shall pass.

Monday morning I woke up at 5 am when I normally like to get up and it was still dark.  A depressing reminder that winter is coming and a gentle nudge to remind me to hold on to these summer days.  To get outside and enjoy the sun, to dig my fingers in the dirt and tend to my plants, to pack a picnic and go for a walk.  At this stage in life I really am just pushing through and trying to do my best in all of my roles but I also need to live in the moments of each day.  Ezekiel is finally spitting out words and starting to communicate, his big personality is shining through and he’s learning that he can fight for what he wants (also known and stubborn independence), if I’m not allowing myself to be present in these moments it’s easy to get frustrated with him instead of communicating calmly and clearly with him.

I’m pushing through this part of life but I’m also fighting for the moments.  It’s an odd paradox to be in – wishing this stage of life was over but enjoying slowing down each day to take it all in.

Reflection – A Season For Everything

IMG_8554I truly believe there is a season for everything.  In fact the Bible talks about this concept pretty specifically;

For everything there is a season, a time for every activity under heaven. A time to be born and a time to die. A time to plant and a time to harvest. A time to kill and a time to heal. A time to tear down and a time to build up. A time to cry and a time to laugh. A time to grieve and a time to dance. A time to scatter stones and a time to gather stones. A time to embrace and a time to turn away. A time to search and a time to quit searching. A time to keep and a time to throw away. A time to tear and a time to mend. A time to be quiet and a time to speak. A time to love and a time to hate. A time for war and a time for peace.

What do people really get for all their hard work? I have seen the burden God has placed on us all. Yet God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end.  So I concluded there is nothing better than to be happy and enjoy ourselves as long as we can. And people should eat and drink and enjoy the fruits of their labor, for these are gifts from God.

And I know that whatever God does is final. Nothing can be added to it or taken from it. God’s purpose is that people should fear him. What is happening now has happened before, and what will happen in the future has happened before, because God makes the same things happen over and over again.

Ecclesiastes 3: 1-15

I’m rarely an emotional person, not that I’m cold and don’t feel emotions, but I tend to react to things on a rational level rather than an emotional level.  My first reaction to things is not usually tears – whether happy or sad – it’s usually a rational conversation with myself about the implications of whatever the situation may be.  Part of not being overly emotional is the lack of questioning “why”.  I tend not to ask, and really don’t care why something is happening.  I know that the question of why can be incredibly debilitating for some people.  People feel like if they know the reason for a situation that they will be able to cope better.  I’ve always been the person who accepts the fact that whatever God does is final.  Let me be clear that this does not translate as me having incredible faith – there are so many times in my life that I can point out where my faith was lacking on so many levels.  A good example of that is my faith that God will heal – I’ve seen it happen several times and I know it’s possible but I struggle to have faith to say that God is going to heal me or anyone I know.

Getting back to “there’s a season for everything” –

I feel as though I’m moving into a season of reflection – for lack of a better description.  Working in both pediatric and adult oncology I am inundated with life and death on a daily basis.  There are victories and there are losses – it’s the nature of cancer, and I’ve been ok with it.  There are days that are much harder than others, but there is so much joy in my work as well.  Often people look at me with pity in their eyes when I explain what I do for a living – as if to say “oh poor you having to deal with that everyday.” Let me be straightforward here and say, I am not the one fighting the cancer, I am not the family walking through this journey, but I am blessed to be able to walk alongside so many people during one of the most difficult times in their life.

I am not cursed with this – I am blessed with this.

I’ve generally been able to go about my work day without a lot of spiritual reflection – whether that’s a good thing or a bad thing – I’m not sure.  This week however, I have been far more reflective.  God has been whispering quietly, urging me to stop and reflect.  I’m not sure where this season in life will take me but I’m thankful for a reminder to slow things down to take time for reflection.  He is the reason I am here doing what I’m doing and I’ve not given him much of that credit lately, nor have I invited Him to be part of the process.  I suppose it’s time to change that.

What are you being challenged in lately? How is God speaking to you?