Skip to main content

Normal Is

As normal does!
Sometimes Justin and I  look at each other and wonder, how in the world did we get here? How did we get to this point, where we take a life of "special needs" as a given? Then there are those days that we don't, and we just sit and wonder at the strangeness of it all. It really is a poignant reminder to us, that when you hit the bottom of the barrel, every little inch towards the surface is a gift. We had a hearing test for Leo yesterday, and though the test itself was inconclusive (no surprise!) the ENT doctor was especially compassionate, maybe because she had just given birth to a little girl with DS. Instant friendship and understanding. I was blatantly reminded of these two worlds, which though are in cohabitation, are very different from one another. When I was a parent of a perfectly normal little girl, I never knew about this other world, about the rejection and constant heartache that those parents face. Never knew about the instant bonds that can be forged out of relief. Relief that here is someone who knows. Who doesn't judge. Since when are we the ones who can determine who is fit for life, and who isn't? Who is perfect, and who isn't? It's harder when your little one looks very different. When all it takes is a glance to separate and condemn. There are days when I would give anything to have spared my little guy his deformity. To have spared him the extra pain and trial of making his head "normal." There is such a stigma against deformity and mutations, X-Men cool factor not withstanding. On the other hand, I know those people who aren't afraid to kiss his head, are my friends for life. When I hear someone use the word "retarded" in a negative way (there isn't any other) I feel a shock and a terrible sense of wrongness. Though I too have used that term many times before Leo!
What does it mean to be different? Well for us, it is starting to feel normal. Our little man is so complete, so present and alive, that I can't imagine him any other way. And though I am excited to imagine him with a "normal," head, I am also apprehensive. Will it change his essence? Will I have trouble recognizing him, seeing him as his totally unique self? Will he be just another one of "those kids?" Chances are, Leo will just do what he does best: defy all our expectations and assumptions! That is the norm that we are getting used to, day by day.

Here are some new pics of our guy doing his thing.


  1. Leo is a blessing. Thanks for sharing him with us.

  2. I never can get over how adorable Leo is! I just love his smile; it melts my heart. He is so blessed to have you as his parents.

  3. Thanks for sharing that perspective. We all have our unique features and his may stand out more than some of ours, but it makes him who he is: a special little guy.

  4. Thinking of all of you and many prayers for Leo and his tests tomorrow!

  5. Christ is risen! He is risen indeed! Today is Easter...a wonderful reminder and celebration of God's ability to confound the wise and deny incomprehensible odds. And, Leo has been doing this all along. He truly is an adorably special all the best sense of that word. Obviously, with God's hand upon him. Can't wait to see him and the rest of the fam this summer!

  6. Christ is risen!

    We enjoyed meeting you both and Leo and Nikka yesterday. He is delectable!

  7. Hope all is well with you all and that you had a very blessed Easter. Desperate for an update!

  8. I am rejoicing with you and praying for you all as you walk through the surgery. Leo is so adorable.
    I thought of this verse as I read your post about the skill of the surgeons and your working in clay.
    Exodus 31 !-5

    The LORD said to Moses, "See, I have called by name Bezalel the son of Uri, son of Hur, ...and I have filled him with the Spirit of God, with ability and intelligence, with knowledge and all craftsmanship, to devise artistic designs, to work in gold, silver, and bronze, in cutting stones for setting, and in carving wood, to work in every craft


Post a Comment

Popular posts from this blog

Lost In Summer

It has been a long time...maybe the longest since I have written to you all last. This blog has meant many different things to me over the past seven years, in fact, it has taken as many different manifestations as its subject matter, Leo the little lion! Not so little anymore, in a couple weeks he will be seven years old.  And so will this blog!  It is amazing to think back to the frightening beginning of it all, and to realize that never in a hundred years could I have pictured myself now, sitting and typing this post at my sunny kitchen table, in my own house, while the early morning sounds trickle in from the open porch door and mingle with the voices of my children in the other room. Not one child, as we all thought seven years ago, but two.  Seven years ago, Leo was not going to live to his first birthday. He was not going to be able to talk sweetly to his big sister, as I hear him doing right now. Though I'm sitting in the other room, I can picture them both clearly; his s…

For The NICU

So you guys know that September is the NICU (Neonatal Intensive Care Unit) awareness month right?  Yeah, I didn't know either.  Every month there is some disease or disorder that we should worry, promote, and be aware after awhile all that awareness stuff gets tiring... But this is the first time I've heard of an awareness month for a place, rather than a physical condition. What's up with that? How come we need an awareness month for a section of the hospital? We have an awareness month for breast cancer, not the cancer ward why the NICU? I'm pretty sure there is a preemie dedicated month, and one for every other condition that may have put the infant in the NICU in the first place, so why the preferential treatment? After thinking about it for awhile, the only reason I could come up with for the need of this awareness of a place, is that the place itself has inherent issues that people (especially potential NICU parents) should be aware of. No…