Love/Hate Relationships

I have a love/hate relationship with these….

This is the “Special Tomato” chair my daughter sits in to be fed, to play with toys on the tray that came with it and then just to hang out in the family room or outside with us.

This is the bath chair that goes in our tub.  This is where I bathe my daughter.

This is Sophie Kate’s stander.  This is where my daughter bears weight on her legs and feet.

I have a love/relationship with these things.  I hate the way they look and I hate that they have to be in my house.  I hate that I have to use them for my baby girl.  I love that they allow me a better way to care for her. 

The purple “Special Tomato” chair allows SK to sit properly, it is completely adjustable and has been adjusted to fit her by her therapists.  It’s on wheels so we can push it easily anywhere we want her to go, even outside with us.  It came with a tray and we put her toys and communication devices on it and try to get her to activate them.  We got this from another special needs child and we are so thankful to have it for Sophie.

The bath chair is on loan to us through our Early Intervention program, we will only be able to keep it until SK is 3, we will definitely have to get one of our own then, b/c this is something we can’t live without.  It has made bathing sooo much easier.  We use our hand held shower head and basically just give her a shower.  The bath chair sits too high for us to fill up the bath tub and actually put her in water that’s really the only thing I don’t like about it.  So I guess technically it’s a shower chair.

The stander is also on loan to us through our Early Intervention program and it too will have to be returned when SK is 3, that is when our Early Intervention services will end.  SK is strapped in to the thing with her arms leaning on the tray that is on top.  Again, there is a lot of adjusting and effort required to get her into it, but once in it the idea is that she is standing upright, bearing weight through her legs and feet.  Hopefully one day she will gain enough strength to be able to stand on her own, so much else has to happen before that though, we are a long way from any of that stuff right now.

Some days I just can’t believe that we are living this life and today is one of those days.  How has all this stuff come to be in our home?  Slowly and over time God has prepared our hearts and our lives.  He is the only reason we are able to bear this.  I still can’t take it all in, not at once and certainly not at all when I start to wonder and worry about Sophie Kate’s future.  He draws me back in though, back to today, back to the here and now.  Jesus, our Provider gives us what we need for today.  Oh, He will take care of our future too, but it will be in His time and in His way and that is where our trust and faith in our Creator come in.  God is taking care of SK, He been preparing for her since before she was born, it is not in the way that I so desperately want, but then His thoughts are higher than my thoughts and His ways are higher than my ways.  He is bringing us through an unbelievably difficult and heartbreaking situation, though, that I would have not thought survivable 2 years ago, but here we are almost 19 months later.  May we never take our eyes off our Creator God, the One and Only source of all our strength.     

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