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The Child You Lose/The Child You Gain

4 May

I wrote these a couple years ago, as two separate blog posts for another blog.  They have been a favorite of mine, and I thought I’d share them again here…

The Child You Lose

I’m usually one to think positive, speak positive about our experiences.  But with Maura’s birthday looming and thinking of different things to write about this month, this thought popped into my head.

See, there is a level of loss when you discover your child has a special need.  Especially if you discover this later than sooner.  For us, we didn’t discover Maura had issues until she was fifteen months.  I am still a little amazed at how one day we walked into the doctor’s office with a perfectly normal child, and left without her.  In her place was this child who needed blood tests for chromosomal disorders.  Who had delays and physical markers for genetic issues.  It was as if we were handed a changeling.  I remember being very angry with our beloved pediatrician, because he pointed out the epicanthal folds around Maura’s eyes.  Until he pointed them out, I just thought she had the prettiest blue eyes.  After he pointed them out, they were all I could see for a while.  Eventually though, I did stop seeing them.  But I always remember they are there.

When you have a child, you have dreams of what their future may be like.  First steps, first day of school, making friends, growing year by year.  Eventually those dreams take you to their high school graduation, college days, wedding days.

When you have a child with special needs, you find yourself giving up on those dreams.  One by one, as the delays become more apparent, you give up things.  At first it was “Okay, she’s going to have to catch up.”  Then it was “Okay, maybe she won’t go to college.”  Before we could truly process things, we were letting go of dreams and dealing just day-to-day.  It was easier that way.

I used to look at Maura and try to see the child she should have been.  The one who walked on time, who talked on time, who chatted my ear off, asking “Why?” four thousand times a day.  I’d try to see what she’d be like without the delays that kept her from maturing.  What she’d be doing if she was a typical three-four-five year old.   I could almost see that child Maura could have become. That child who for the first fifteen months of her life, she was going to be.  The one who doctors kept saying she might catch up too.

Then one day, I realized that doctors had stopped saying “She might catch up.”  And that child she could have been was barely visible.

Maura’s about to turn seven years old.  She should be doing so much.  She should be finishing first grade. She should be potty trained and dressing herself and worrying about what some other little girl said on the playground.  She could be reading and doing math and telling me how she’s going to be a rock star when she grows up.  But she doesn’t do any of that – that child was lost to us the day the doctor said “I want to send you for a blood test….”  We were just too naive to realize it at the time.

One day, when Maura was three, I had her with me when I went to see my therapist.  She was watching Maura doing her thing, then said to me matter-of-factly “You know she will probably always live with you.”  It was the first time anyone dared to say that to me.  I answered yes – and realized that I did know that.  It was just never addressed before.  It was that ugly reality of “your child will never graduate high school, go off to college, get married…no, she will never be independent”.  It was something that needed to be brought out into the harsh light and acknowledged.  I did, then tucked it back into the closet.  I know it’s there.  I just don’t need it staring me in the face every day.

More ugly truths had to be addressed.  The child Maura was supposed to be was also supposed to be perfectly healthy.  With our older three, we rarely saw a pediatrician.  Soon we were seeing doctor after specialist.  I learned which lab did good blood draws on children and my way around the medical center.  Things seemed to mellow out, only for her to have a seizure and start us down a new path.  One we’re still trying to figure out.

The way she started kindergarten was also not how it could have been.  The biggest drama should have been having the right backpack and lunch box.  Instead it was “Can the school even handle her?”  We had a meeting with fourteen other people to determine that.  We had the same sort of meeting to determine what her first grade year will be like.

In what seems like a very long time ago, I came to the realization that even if I was actually given the choice of keeping Maura the way she was, or being able to wish her into “normal”, I would choose to keep her the way she was.  Because at the end of the day, she really is an amazing little creature who is full of joy and happiness.  Making her normal might take that away, and it just wasn’t worth the risk.  On another special needs blog that I can no longer find, a father wrote how his daughter was the way God wished us all to be – innocent and joyful.  I think of Maura that way.  I joke that the world would be a much better place if we all had Maura’s attitude towards life.  But that doesn’t mean I won’t always be a little haunted by the child she could have been.

I know I’m not alone in this.  I think this happens to other parents as they watch their children struggle with a disease or syndrome.  We can love our kids, never want to change them, and still wish we could take away the struggle and let them have some normalcy.  We see glimpses of the child they could have been.  I’m beginning to realize that it will never go away.

The Child You Gain 

But with something lost, there is something gained.

Maura was my fourth child and I thought I knew it all.  She taught me that I didn’t know it all, that there was much more to be learned.  And I’ve learned.  Boy, have I learned!

I may have lost the child Maura could have been, but the child she is has been amazing to know.  Maura is definitely different.  Not just because of her issues, but also because of her attitude and personality.  It really is something you sort of have to see for yourself.  Those of you lucky enough to know her understand.

Maura is a child who has always been able to smile with her whole face.  When she’s happy – which is almost always – she radiates that.  She assumes everyone loves her, and because of that, you can’t help but make that assumption true.  She takes pure joy out of doing things she loves, like dance class or playing in the pool.  She gets excited over the littlest things, like being given a penny, or blowing dandelion puffs.  A hug from her makes anyone’s day better.

She reminds you that it’s okay to go slowly, to celebrate the small victories.  She is naturally relaxing.  As an infant, we would fight to hold her because she could relax you so much, you’d fall right asleep with her.  She still has that power sometimes.

Maura may currently have the mind of a three year old, but she’s a three year old that knows her mind.  She is picky about her clothes, loves fun shoes, chooses awesome frames every time she gets new glasses.  She has her likes and dislikes, whether is food, shows or music. Even for an almost seven year old, she has particular taste in music.

It’s funny – when she was a baby, I noticed her ears were slightly pointy, and I jokingly called her my elfin baby.  Even then I guess I could see there was something different about her.  Like she’s some magical little creature.  Every so often she does get this other-worldly look about her and it makes you desperate to know what goes on in her head.

I also noticed that her look isn’t as mature as other girls her age.  I have friends with daughters who are the same age and they look so much older than Maura, even though Maura is bigger than most of them physically.  Her face reflects her development.  I do believe that Maura will be child-like all her life.  She will always have this innocence about her.  And how many of us have wished for a certain amount of innocence back?  In a way, she is luckier than us.

And she is loved.  So very loved.  I used to get worried when we’d meet new people, or visit family after they hadn’t seen her in years.  Would they accept her?  Or would they look down on her?  My fears were silly, my Maura charmed just about every single person she met.  She’s even charmed people she hasn’t met.  And those few people who she didn’t charm?  I learned to chalk it up to “their loss”.  They obviously weren’t special enough to earn her smile.

I know there are some who think “Oh, you poor thing.  There’s something wrong with your child.  How awful!”  The message I want to send to them is this.  It isn’t awful, and your pity is not needed here.  Being Maura’s mother has taught me so much, made me realize that I can handle things I never dreamt I could have handle.  It is a daily reminder about how lucky I am to have three other wonderful, healthy, compassionate children, and an amazing husband who truly is a great father.  It has taught me to appreciate all that does go right for us, that a sense of humor can get me through most things, that there are no guarantees in life so don’t take anything for granted.

Maura wasn’t the child I thought I was supposed to have.  But I am so grateful to have been chosen to be her mother.

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21 Responses to “The Child You Lose/The Child You Gain”

  1. Anne McCarron Liptak May 4, 2012 at 8:13 am #

    The expression of the emotions and feelings you describe yourself having here mimic mine exactly! I love how God works to change our limited human mindsets!

  2. Madonna Dunn May 4, 2012 at 8:16 am #

    Oh. My. Giddy. Aunt!!!! How did you get into my head??? Thank you for being so perfectly articulate!! My daughter Lara is four this year and our path a little different to yours in terms of special needs but your words could have come straight from my head, my heart or my soul. I will definitely be passing this around. Thank you so much !!!!

  3. Rachel May 4, 2012 at 8:34 am #

    your daughter is a beautiful young lady….

  4. Beth May 4, 2012 at 9:30 am #

    With 2 adopted daughters who, over time, revealed cognitive and emotional disabilities, I can only marvel at how you put MY
    thoughts on “paper” (and I’m printing this one to keep forever). The lessons I’ve learned are that they are children of God and challenge us to love even more deeply. I too feel very blessed to have been chosen to be their mom.

  5. Marianne May 4, 2012 at 9:35 am #

    Your life so closely resembles mine, it’s scary. My daughter Mary (my 4th) is intellectually disabled with a seizure disorder. I have thought all the same thoughts and had all the same feelings. It gets even more fun! Mary is 12 now, with the brain of a 8 year old, and the attitude, and body, of a 15 year old! Life is crazy around here, and I wouldn’t change a thing!

  6. Angel Brookins May 4, 2012 at 10:02 am #

    Thank you, Phoebe. You remind me that in life, it’s how we look at things that matters. You choose to see your little Elf as a blessing, and she blesses your life in return. We know that it’s not easy, but you are very lucky to have her, and we are all very lucky to have YOU to share the experience with us. Thank you!

  7. Audrey May 4, 2012 at 10:22 am #

    This is so beautiful! You had me tearing up, your mother’s heart really shines through. And I love it because it’s simply being a mother, special needs children or no, because I see that heart in my own mom too. This makes me wish I could meet your little Maura, she sounds like an amazing person, touched by God and richly blessed. Thanks for sharing this. 🙂

  8. Ana May 4, 2012 at 10:45 am #

    Loved the post. thanks for sharing

  9. Nicole guerra May 4, 2012 at 3:04 pm #

    I love this, so beautifully written and inspiring 🙂

  10. Renee Anne May 4, 2012 at 7:41 pm #

    As a parent of a child with weird genetic things (okay, just one weird genetic thing), I think this is very fitting. My child is “normal” by most standards but there are just some things we have to do and watch and take into account that other parents don’t need to even worry about (though some do).

    When we found out there might be something wrong, we turned into panicky parents…well, I turned into a panicky parent (and I probably had enough panic for all of us). I suddenly started thinking of all those things that he might not get to do or might be delayed on or might have trouble with……funnily enough, he’ll still be able to do everything, will probably be right on time (or ahead), and won’t necessarily have trouble so much as need adjustments. But, at that time, I was almost in hysterics…now he’s 18 months old and as perfect as he can be. I wouldn’t change one genetic marker in his body, even if it means getting special formula from the UK. Oh well.

  11. Lisha @ The Lucky Mom May 4, 2012 at 9:18 pm #

    Each of us is exactly what God intended us to be. Therefore, each of us is perfect.

  12. erin May 5, 2012 at 1:45 am #

    thank you again for writing, it is like a mirror into my own soul.

  13. Jessica May 5, 2012 at 8:11 am #

    So wonderfully written about the intricacies of loss, regrets, things you fear to say out loud or even to yourself. And in the end you find your way, even when it wasn’t the way you had thought you’d ever travel.

  14. Darcy Pennington Arnold May 7, 2012 at 8:00 pm #

    Phoebe, THANK YOU SO MUCH for this post. My granddaughter has Down Syndrome and is almost seven. Your post touched my heart so much; I laughed and cried at the same time. The fact that you can love your child so much and yet sometimes still want the normalcy for her.

    Our little Kierra has brought so much happiness in our life and still last week while picking her up after school and seeing two other little girls frowning at her because she wanted to give them hugs I longed for her to be ‘like other children’. But guess what, the same two little girls who were not being friendly to her were caught bullying a ‘typical’ little girl the next day and were caught by the teacher. I realized then that some people out there are just bullies…..not because my granddaughter is different than others, they’re just not nice people.

    You’re right…..those are the people who suffer the loss of not knowing our kiddos!

    Thank you, thank you, thank you for verbalizing the feelings and thoughts of those of us who are not as eloquent:)

  15. mommyangela May 7, 2012 at 8:02 pm #

    Thank you for this post; it brought tears to my eyes, and it stirred in my heart a longing for resolution on this subject matter in my own life.

  16. Life's Unexpected Blessings May 8, 2012 at 7:59 am #

    Wonderful post! Thank you for sharing!

  17. Revell May 8, 2012 at 1:20 pm #

    Thank you for so beautifully stating what is in my heart, but am unable to articulate. I hope my husband will read this and discover that it is okay and normal to find the joy and happiness in our son.

  18. Kelly May 20, 2012 at 11:43 am #

    I think your words speak for so many of us walking the special needs life path. I never thought I could parent a child on the autism spectrum. I just knew I didn’t have it in me. Ha! He’s 13 now and not at all who I expected when I read the little plus on that test. He has surprised me since the moment of his birth. I would love to make things easier for him but I would never want to change the amazing person he is.

  19. seventhvoice May 27, 2012 at 7:54 am #

    This is so honest and well written. I agree with you. Though we may not gain the child we dreamt of in some ways we gain so more than we could ever possibly have imagined. I wrote my own story years ago. My son is now 15 and I won’t lie, the early years were heart breakingly hard. I would be honored if you have the time to give it a read one day…. it’s called Learning to Swim in the Ocean of Autism… on my blog here at wordpress. I also have to say I loved welcome to Holland in the early days but now that I’m more of a veteran I prefer the Welcome to Beruit version. Thank you for your brilliant post = )

  20. phoebz4 April 14, 2015 at 10:32 pm #

    Reblogged this on Herding Cats and commented:

    Written when Maura was turning seven, there’s still so much truth in all this today…

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