Monday, October 3, 2011

The Fear

Every mother worries about the statistically improbable "what ifs".

Every mother lines her house with outlet covers to protect prying little fingers, sets up gates to prevent tiny bodies from hurling down staircases and creates padded corners to cover sharp edges because we all imagine worse case scenarios. The precious little bundles that we grew, birthed and constantly nurture are all one breathe away from a possible tragedy.

As mothers, we do everything in our power to protect our children- to shield them from all pain and hurt. But what happens when events spiral beyond our control? What then?

My daughter was born with an extra chromosome. Frankly, I have made my peace with that because it is a necessary part of the genetic makeup that has created the most perfect daughter I could have ever imagined. She is my light, my joy- she has stolen such a large part of my heart that if something were ever to happen to her, my heart would never be the same. Sometimes I wonder if it could even recover from such a devastating loss.

Of course, that is a typical mother thing. Once that anticipated little baby is placed into those loving arms for the first time, things are never again the same.

But, in addition to being given a healthy dose of normal mom worry, I was also blessed with a daughter was  born with transient leukemia which means that her already elevated chance of developing real leukemia (because of the Ds) has been increased by an additional 30% because of the "confused" blood cells at birth. Her chance of being diagnosed with full blown, scary-take-your-breath-away leukemia before she is 3 is so high sometimes it puts my mind in dark places.

Mothering a child with special needs, I face the reality that the assumed scenario of the daughter's lifespan outlasting the mother's might not occur as expected. No one is guaranteed that. But when you have scary labels floating around, percentages being tossed your way and doctors filling your head with the "what ifs" while offering up the scariest of scenarios set around the "L" word- all of a sudden that fear is magnified.

Lately I have been afraid. That I will lose Addison.

Lately I have had this feeling that she is too good to be true- that the seeming trial that I faced by mothering a child with Down syndrome is not the only hurdle to overcome in my career as a mother- that I have yet to face the horror of losing a child.

It's an unwanted feeling that I shake as often as I mentally can. The "one breath away from tragedy" seems to be staring me in the face and I don't know why.

Her life is fragile. Her existence is a gift. What if it's taken away from me?

No one is guaranteed tomorrow, but with Addison, sometimes I'm afraid that every mother's biggest fear will become my reality.

Her chest to rise and fall for the last time, her blue eyes to give me one last impish look, her wiggling body to lie too still- We just put a pillow in her crib, and I swear when I look at her lying without moving on the pillow, wayward curls framing a face that looks entirely too peaceful- my fear of losing Addison reaches up and strangles me. I wonder, how would I recover from losing her?

Yes, every mother fears the death of a child. But me imagining the worst case scenario because of the possibility of leukemia in our near future is not just me being overly dramatic or attention seeking. The chance is very real and is something that I live with every day.

I fear. constantly. that I will lose her.

Every day I hug her tighter, love on her more, laugh with her constantly, seek to fill a lifetime of mothering into that one fleeting day. Because how long do I have left with her?

Yes, mothering a child with Down syndrome is hard. and frustrating. and is dreaded by many. But I submit that the worst thing about mothering a child with Down syndrome is the thought of losing that perfectly designed child that fills a hole in your life that you didn't even know existed. The worst thing about mothering a child with Down syndrome is the terrifying fear that you will bury that beautiful little girl and have to leave her behind in a cold, lonely cemetery, abruptly concluding your nurturing role.

The worst thing about mothering child with Down syndrome would be having your life graced in such a way and then having it all taken away.

But really, that could happen to any mother. Outlet covers can be forgotten, stair obstacles scaled by the overachieving toddler, sharp edges still manage to penetrate tender scalps.

The same heavenly Father who created my daughter's life so perfectly holds the end of her life in His control as well.

But it's hard to trust.

When you have someone so overwhelmingly wonderful in your life, the fear of losing that person is very strong.

Down syndrome isn't the enemy.

It's whatever might cause the heart in that amazingly extra chromosomed body to beat its last beat. Whatever would steal the light from her beautifully unique almond shaped eyes. Whatever might erase the rosy glow from those chubby cheeks. That is the enemy.

Some might say that it's better to never have loved at all rather than have this kind of love and lose it. I find that to be a bit like saying that it's better to not have breathed oxygen at all rather than breathe oxygen and then have it taken away.

Because Addison is oxygen to my starved, selfish self who before her couldn't comprehend that difference can be a wonderful thing. That disability doesn't mean that you "can't". That believing stereotypes and labels just means that you are too blind to see the real person there. That perfection is in existence and love not in previous misconceptions born in ignorance.

Without a doubt, Addison has changed me. Her life represents so many miracles, tears, prayers and love.

Why is it that I spend so much wasted energy and tears fearing that the end of her miracle life is nearer than what might seem fair? No parent ever wants to think of losing a child.

But it happens. every day.

I plan on passionately mothering my angel baby while I can. Singing along with her favorite CDs while she still can hear me. Kissing while she still can kiss back. Hugging and cuddling while she still can try to wiggle free to go create more trouble. Stroking her sweaty forehead while she still can have bad dreams. Laughing with her while her rosebud lips can still part with mirth.

I may not be guaranteed tomorrow. But I will always have today. And I plan to fill today so full of love for my little girl that there's no room for the fear- that the "what ifs" don't turn into "if onlys".

Yes, every mother fears the death of a child. I pray it never happens. To you. or me.

Sometimes the hardest things in life are the ones that spring unexpectedly towards you, taking your breath away with the cruel unfairness and unlikelihood that this is actually happening to you. I once thought that tragic unexpected was Down syndrome. How wrong I was.

No, the tragic unexpected would be to lose my little girl whose integral makeup happens to spell Down syndrome.

I pray for peace. and trust. and the ability to squeeze the very essence out of every moment with her.

Just in case it's the last moment I get.


  1. (((Hugs))) I don't think I could cope if I had that level of is already the thing that I try not to dwell on. And Reagan doesn't have the elevated risk. I have to hand it to you've discovered the is sweeter because of what tomorrow might hold. Have you ever watched Shadowlands? Praying for you and Addison!

  2. I too have/have had this fear. I did think at one time that as long as they get to adult it would be "ok". That is not happening. The "fear is still there and I remind myself that each of my sons and now 2 granddaughters are a gift from God and not mine to keep as my own. I think that the fear of losing a loved one is the biggest fear we as mothers may have. We must trust that by God's grace we will have our gifts as long as the Lord will allow us to have.
    BTW I know we have never meet and I hope to meet you are your gifts on Sunday Oct. 9th I will be visiting VT. My last name was Frizzell, so you may know my family :~)

  3. I think your fears are totally normal. I have the same thoughts about Donovan and he doesn't have any health issues (that we know of). Our babies touch our lives like nothing else has before and the thought of them NOT being a part of our lives at any given moment is terrifying. We lived without them for 20-something years, but not having them anymore?! Inconceivable. It can be hard to trust God, but really, what else can we do?

  4. Oh my goodness, you took the words right out of my mouth...literally! I, too, sometimes think that Emily must be too good to be true. Isn't it amazing how something we thought we couldn't live with (DS) ended up being something we can't live without!

  5. This post hits so close to home. So much so that I actually already wrote (but not published) a post talking about the big L-word a few weeks ago. I freak out because Ellie keeps getting petechiae--which can be a sign but it can also be just a normal thing with viruses and whatnot. Isn't it amazing how we have lived so long without Addison and Ellie and now we cannot bare to live a life without them?!

  6. What a touching, heart-wrenching post.

  7. Wow....that has always been my constant fear and I don't even have the threatening issues to deal with that you do..but the fear of something happening to one of my kids is ever present.

  8. I read this earlier but I was too emotional to post...I think about this daily! Not so much the dreaded "L" word but just the general idea that something might happen to Sutter or Landon. I think a lot of it has to do with my early emotional thoughts after Sutter was born and how I thought life for all of us would just be easier or better if he hadn't been born (pains me to even type that or think it now). I simply can't imagine one day without him - he completes me and the thought of losing him is too much to bear.

    Big hugs!!!

  9. "Fear not." Two words God commands us and two of the hardest. Bless you, dear one, as you nurture and enjoy your wonderfully made children.


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