our world in colour: september {2013}

September 18, 2013, Michaela Evanow, 11 Comments

suction machine in action. she tolerates it now, opening her little bird mouth when she needs some help.


cardboard boxes that used to carry sterile water and formula. suction, food and a weird new seating device we are borrowing. it’s a giant bean bag that you can suck the air out of. problem is, it’s broken, so it turns flat in 5 minutes flat…it’s better than nothing!

the most beautiful hands in the world.


sprouting curls.


too big for this baby bassinet. we are waiting for much needed equipment. like a special stroller.


she loves her mini animals.


pj’s are on still, oh yes. Florence in her standing frame. at least she’s dressed.


riding in the car, keeping an eye on oxygen levels.


waiting, waiting, always waiting at the hospital.


more waiting, and then sleeping (without Bipap…)


after all the waiting and no real nap time, her body played a trick on her and she struggled for a bit, losing color in her face and choking. breathing in some gentle oxygen helped.


friends for life: Charlie Ann and Florence, both diagnosed with SMA type 1.




the feet splints of a hero!




the doll I wish my daughter had thrown across the room all on her own. but no, it’s only laying on the ground because I was too lazy to pick it up.


So much happens in a month, and for us, a month is another 30 or so days of truly living, of celebrating, of seeing the beauty in the ordinary. We don’t take our days for granted. We can scarcely fit in enough kisses for Florence in each day. We are a “special needs” family, if you want to call us that, and life is a bit different for us.

This month has been lovely so far, although we are approaching cold season. We had such a blissful summer, with no worries of germs. And now, the slightest dip in temperature can cause a dip in our hearts too, if we let it. I love fall. It’s my favourite season, and yet I’m in a battle with my heart. I don’t want fall to come. Because I’m afraid. I don’t want to be afraid, and I really do love fall. So I’m trying to welcome it with open arms. I bought a pumpkin as soon as I saw them sitting in those giant cardboard boxes outside the grocery store. I’m trying not to think about another extended hospital stay. So I’m letting it all go…knowing full well that I am not in control. And knowing that I’m loving her with all the God-force in me, loving her smells and sounds, breathing it all in.


as we head into cold and flu season, i am forcing my heart to put it’s anxiety to rest. it does me no good.


  • Reply a few things - Rookhuyzen.nl September 21, 2013 at 6:31 AM

    […] Love and pray for this beautiful little girl. […]

  • Reply HelenHelen September 20, 2013 at 12:00 AM

    i love these pictures. your little florence is so sweet, and those hands truly are the most beautiful hands.

  • Reply Crafts With Rachel September 19, 2013 at 3:21 PM

    my last one there was a typo I meant to put have you got or bought it yet

  • Reply Rachel September 19, 2013 at 3:19 PM

    Have you go the special stroller yet?

    • Reply Michaela. September 19, 2013 at 4:38 PM

      Hi Rachel, we are in the process of hunting one down. But it takes some time…

  • Reply child of God September 19, 2013 at 12:19 PM

    Oh what beautiful pictures!!
    Covering you all in prayer often and asking for a creative miracle and now asking Father to supernaturally protect all of you from the flue and from colds.

  • Reply Janice September 19, 2013 at 12:17 PM

    Your posts always amaze me your beauty and your strength always shine through!

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