Thursday, May 07, 2009


The pictures above were taken when Fiver was two and a half. He had only been walking on his own for a few months, and that slow development has marked his entire life.

When I took these pictures in my parents' garden, I had no way of knowing what was coming our way in terms of diagnoses and therapies. I didn't know that he couldn't see clearly, or that he was functioning at a thirty decibel hearing loss.

I didn't know that he had profound muscle weakness, or that every movement felt, to him, like the entire earth was shifting. I didn't know that everyone sounded like they were talking under water. I didn't know that the way he liked to lean on people and lie sprawled on the floor were signs of his inability to maintain his posture, as opposed to signs of him being a laid back kind of kid.

I didn't know that in a few short months, we would find out that he needed glasses and that he desperately needed his ears fixed. He also desperately needed speech therapy, and, the biggest surprise of all, he needed immediate occupational therapy.

I didn't know that when he was six he would have already spent half of his life in therapy, or that he would be diagnosed with Asperger's Syndrome, Sensory Processing Disorder, and other unexplained and unnamed neurological problems.

I am so thankful I didn't know. I am so thankful.

Maybe it sounds strange to say that, and sometimes it feels strange to articulate it since, as a general rule, I am not favorably disposed to not knowing things.

I've always thought that I would definitely want to know if my unborn child had some kind of genetic defect or developmental problem. I was sure that it would only serve to make me prepared and strengthen my resolve.

Now I'm not so sure. I find that happens more often the older I get.

I know that a prenatal diagnosis can be very helpful in a case where the problem can be treated or corrected after birth, but what about a prenatal diagnosis of a condition that cannot be fixed?

It seems, at times, to offer a false choice: There is nothing to be done, so you can live a life of hardship with a defective child, or you can opt not to have this child. What does that do to a parent?

If, during my pregnancy with Fiver, my doctor had said:

Look, Aimee, I just want you to know that this baby will be delayed. This baby will regurgitate all of his food for the first ten months of his life because his esophagus is too weak to push the food down his throat. He won't sit up until he's eleven moths old. He won't walk until he's two. He won't like swings or slides, and playgrounds will be a nightmare. For years. Every time you go over a bump on a car ride, even a speed bump, he will scream. He won't say your name until he is almost three. He will hum and sing and flap his hands and stare at pulsing lights. There's more, but I don't want to scare you. And school . . . well, let's just say you will cry. A lot. So good luck to you.

I would have been terrified. I would have been immobilized. I would have dreaded Fiver's babyhood. It would have been a disaster.

Because there are things that no test can ever tell you. Things about what might happen when you open your life to having any child, especially one who might require extra care.

You never know how it will all pan out. Even with children perfectly formed.

And there is a secret, too.

These kids who require more -- the ones that can often be thought of so compartmentally, so statistically, so clinically -- they bring us more. They are the ones who are gifted . . . to us, if we are willing to be the recipients.

There are graces that come, unbidden, into your life. There is a deep well-spring of joy to balance the difficulty. There is the love that bubbles up, unheeding of hardship and exuberant.

It's the hand of God changing your life, and that is the thing that tests can never tell you, and for which you can never be prepared.

Fiver drew this with his own little hand, and I could cry for looking at it.

The hand that was born weak has made our family strong.


  1. Anonymous4:18 PM

    He is such an awesome kid and though I only know from my own experience a small sample of what you are talking about- I could not agree more. I think the time you spend working with these gifts of children serve to bring you closer to them. You begin to see the world from their perspective and that opens your eyes in ways you never imagined possible. So God has blessed us with gifted children in so many ways and in the end, we will all be better off for having struggled through the journey with them.
    Mirabella MOM

  2. Oh, what my heart just did when I saw that picture he made! You are right, even as a teacher, often the ones who require just a little bit more are the ones who leave a special mark on your life! What a blessing that we don't always know what lies ahead...but we have a loving God who does!

  3. I am mostly a lurker to your blog, but I had to tell you that your post touched me. Fiver is lucky to have you for a mommy.

  4. My son just asked me, "Mommy, why are you looking at the computer and crying?"

    What a wondrous child of God's creation you've been blessed with, and your child with a wonderful mother.

    Please try to get this piece published, or read it as a speaker to groups who have/are experiencing the same parental challenges you have.

    You are amazing. Thank you for sharing this---and Fiver---with us.

  5. I defy ANYONE to read this and not cry.
    And I have nothing else original to say that the other commenters ahead of me haven't said already.
    What a wonderful post. Thank you!

  6. Positively beautiful post! Fiver is incredible, and he is blessed to have you as his mother.

  7. I have goosebumps. He is so lucky to have you and Rob for parents and I am lucky to know him and for getting to spend time with him. Thanks for sharing this. You have been through so much and you are so strong and amazing! You have so much to celebrate on Mother's Day!

  8. Oh my goodness! I feel so blessed to have found your blog. This post is so poignant. I feel like this needs to be shouted from the highest mountain top. I feel the same way about "not knowing" about my son and feel so blessed that I made the decision not to do any prenatal screening. Just the 20 week ultrasound so I could see my precious boy growing inside me :)! I will be back to visit!!! I am a kindred spirit in regards to this topic. Thank you for writing this.

  9. Holy Cow Aimee!!!
    He is a fantastic artistic.
    This post needs to be published.
    Do you know Faith and Family Magazine?
    I think you should send this to them.

  10. I've said it before, but you really are an inspirational mother. I teared up reading this post. You are so strong (even though you might not always feel this way) and full of faith and love, and I feel fortunate to 'know' you

  11. Oh my goodness, there are tears in my eyes. What a precious child, and Praise God that he knows he is loved, by you, by Rob, and most importantly by the one who made him. Thanks for sharing this Aimee.

  12. Oh Aimee! So have a way of expressing everything I think, but so more beautifully than I could speak it. I agree that special needs children are gifts, and I have found, through my work with developmentally disabled persons, many of whom have Autism, that we as a society should concentrate on the "special" part of special needs. When I first started my job, I truly struggled with the idea of having a child that you know will need so much help in their lifetime, especially knowing that some of these children can't speak, can't even say "mom," and I was convinced that were I ever in these parents positions, I would not be able to do it. But I have found so many many instances where I have seen true love in action between these parents and their children, that I am convinced they are a living message from God on how to love.

    I love you and Rob and my Fiver and Sallie, Bun, and Francie with all my heart. You, too, are a living testament to the power of love.

  13. Thanks for sharing so honestly the experience of parenting "a kid and a half" (as I refer to my own handful of love covered in noise and dirt...:) . I couldn't have read this at a better's been a long couple of weeks here. God definitely picked the just right parents for your son.

  14. Thank you for sharing Aimee. He's a lucky little boy to have you as a mom. And I know that you are lucky to have him as your little boy. HUGS and Happy Mother's Day.

  15. Wow, what a beautiful post and so true for me, too. I didn't want any prenatal testing because I would worry myself sick if I knew my 4th child would have Down syndrome. Today's culture is so quick to eliminate anyone not perfect in their definition. I cling to those graces from God to keep nudging me along the path He's chosen for me. Thank you for your beautiful blog.

  16. Oh, Aimee, you got me sobbing puddles. So beautifully worded. How nice that someone else out there understands what I feel about Little P. You said it better than I ever could. Fiver is one lucky kid.

  17. Oh, Aimee, you got me sobbing puddles. So beautifully worded. How nice that someone else out there understands what I feel about Little P. You said it better than I ever could. Fiver is one lucky kid.

  18. Oh Aimee.. what a wonderful post. My heart is beyond moved by your words. I decline the AFP genetic testing at every pregnancy for this very reason... I trust God to give us just the right child for our family,and I don't want my own worries and fears spoiling the joy and peace I have with each pregnancy.

    By the way, you have officially graduated to gettinga link on my sidebar. Your blog is definitely one of my "favorite favorites".

  19. Aimee,
    You are so right here about every thing you said. Do as much as you can and leave the rest to God. I've already told you about my special kid. Thirteen years after being told he had a "mentally retarded IQ level" he was inducted into the NHS with a 3.6 GPA at an academically challenging parochial school. Experts don't know everything. Sometimes they don't know nothin'. Only God knows.

  20. Wow. Just "wow". Oh, and yes, you should try to publish this.

    Thank you.

  21. GeeGee9:46 AM

    I love you.


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