when your needs are…different.

September 28, 2012, Michaela Evanow, 5 Comments

Today it kinda hit me.

I love Florence so much, I don’t care if she walks or crawls or sits up unassisted. I kiss her lips and fall in love all over again. Her fragrance is sweet, and it melts away any fear I have.

And then I think, no, NO I DO care! I want her to walk and sit and play. I want these things so bad I have to keep them at bay with pray and songs and words. These needs threaten to destroy (crush, pulverize—not pretty words) my heart somedays.

I don’t know how much I can take, but I do know my God equips the broken hearted. He comes when we call. And I call on Him often, and He whispers words of hope to me.

And then, those moments when I Google “Baby Carriers for Infants with….Special Needs” become a little easier. Because I have hope.

I was at a library group for little ones, where everyone was singing, everyone was happy. And although I let my guard down a little because I was with two great friends and their little ones, I also had to pull up my armour, up, around my ribs, shoulders, all the way around to the tops of my ears to feel safe. I had to hold Florence in just the right position, in order to not “give away” her condition. I had all these words prepared like “She’s just hypotonic. What you’ve never heard of that? It’s just low muscle tone.” I will never say she has any condition. I cannot. I cannot label her. I’m not afraid, I just don’t like it. If a mother has a child that was diagnosed with Down Syndrome, or Cerebral Palsy, she most likely doesn’t go around telling people these things in order to make them feel better, or more informed.

One woman gave me the eye, like she knew something was up, and was trying to “figure Florence out.” I gave her the eye (if you know me, this eye can practically punch you in the face) and kept it there until she turned away. I want to protect Florence with all my might. I want to keep her safe, like any mother does. If that means giving the stink eye, so be it. I am not a sweet little lamb. I’m just not. I’ve tried, but there is a fire within me, and I can’t always put it out.

In any case, we all left early, and I felt happy. Then I mentioned to Jay later that night that I might consider going to a sing along group for children with different needs. And I promptly burst into tears.

Somedays I can browse online for baby carriers with great neck support (yet to find one…), and bouncy chairs that sit way upright and highchairs that can recline.

And somedays I can’t even bear the thought of attending a play group where I might meet someone in a situation like mine.

Like last week, I made my mum come all the way from the island to be with me on Florrie’s first day of swim class. It’s for children with different needs, and it’s basically the same as any other infant swim class, with less splashing, perhaps. I didn’t want to go alone for the first class, because I feared that I would see all these caregivers or nannies with these unique and beautiful children, and no mothers. Because they’d be working. Not living in the day to day struggle like me.

Or maybe they were there, but they weren’t like me. Maybe they were weird.

Anyway, the baby swim class was cancelled. We found out once we got there, and I was in a foul mood for a large portion of the morning. Do you know how much I psyched myself out?! I wanted to yell. But instead we went shopping at Anthropologie. And mum bought me a shirt.

I want to experience camaraderie with mothers that are like me. Is that too much to ask? I have a wonderful, incredible group of friends in the city, with beautiful babies and it’s the greatest gift. I never take it for granted. When Florrie and I hang out with them, I feel safe. That place is the warmest place I could be. It’s like an embrace from Jesus…familiar and tender.

5 Comments

  • Reply Emily October 2, 2012 at 9:43 PM

    You are a wonderful writer because you speak truth and are willing to open your heart to others. Please keep writing, I am able to follow alongside in prayer for you and your beautiful Florence. Thinking of you often and wishing your family restoration. xx

    • Reply Michaela. October 3, 2012 at 9:41 AM

      Thank you Emily. I appreciate that.

  • Reply Bev. Nash (Grandma) September 29, 2012 at 3:03 PM

    O.K. I am full on bawling now! Jesus loves and feels like you do, we do, for Flo. He wants to protect us, bring us into the shelter of His massive arms, and stand up for us, His furious love…….Your furious love……. It is so wonderful how you put it. It’s the love that drives you on. The deep, feelings of the heart that give you the grace and strength to go on, to hope, to believe, and to stand on the side of all the love based emotions. That is where safety and strength are. Every day we must choose Life. We choose life for Flo and for ourselves. If we don’t live this with intention we will live by default and sorrow. I know you are choosing life for Florrie. You are going to deep, deep places where the water is so sweet and life sustaining. Some drink from the shallows and are never fully sustained. But you are not one of these, warrior princess. Love you so much………….

  • Reply becca September 29, 2012 at 1:25 AM

    beautiful post, michaela. thanks for your honesty, for letting us in on what’s really going through your heart, your mind. i wish i could be one of those friends doing the day to day with you in vancouver. since i read your post this morning i’ve been thinking about why we try to ‘figure people out’. i’m definitely guilty of that, i want to know what happened or what’s going on. but i was challenged by you in that today and when i saw a woman in the shop with a ‘different need’ i just saw HER, i let my initial question go and I just saw her beauty, her uniqueness, her worth unsurpassable; i rested there in the ambiguity and while it was a matter of seconds it was maybe different than i’ve looked at someone before. we love labelling people, finding our ‘place’ compared to what we assume about others. it’s sad. Lord help me to teach my children to see with clearer eyes than my own.

    you are an inspiration.

    much love to you three. xx

    • Reply Michaela. September 29, 2012 at 2:18 PM

      Yes. I didn’t even think of this post that way….teaching people to have emotional compassion for those with different needs. Thanks for sharing that becca. I wish you were here too…

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