Every good gift and perfect gift is from above…..your girls are the most perfect thing I have seen, Happy Thanksgiving to your family.
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I come back to your blog daily because of the honesty with which you express your feelings. It's nice to see how there are two sides to every situation but you always come down on the side of love and joy for your daughters.ReplyCancel

I really liked this post. I read all the time. My situation is different in that it is my mom who has MS and we are all slowly adapting to her changing situation. Your fears at first sounded like mine before my mom got her first mobility device, and must like you, when I saw how much easier it made her life, it was harder to be scared. I still face this struggle (and I am sure she does as well to a much much larger extent) each time she needs a new piece of equiptment, especially as the disease progresses the mobility devices become much more necessary, but it is good to remember how much they help. All of that to say, I understand about aadapting to the challenges. Thanks for your lovely blog.ReplyCancel

I helped a little boy in my preschool class learn his power chair, he has CP and his entire body is affected so it took alot of teaching for him to keep his hand on the joystick. I had my toes run over several times and "saved" quite a few of his classmates from being run over. A remote stop button would have come in very handy 🙂 Good for you for getting her that chair at 2 years old! Where I work we dream of wonderful parents like you that want their children to learn and grow. So many parents wait until their kiddos are heading to Kindergarten because they aren't ready. WHile I do understand why they wait it holds their kiddos back from many activities. You have blessed her and you should be so proud of you beautiful girl!ReplyCancel

Hi,

I was wondering why you haven't written about the chair since it arrived. I didn't realize there was so much to learn and adjustments to be made. Now I know.

It's only a matter of time before PSP and Lamp take over the world!

Who sings that song, "Baby, you can drive my car?" Is it the Beatles?

Did you paint that picture of grass and sky that is next to the computer?

I like the improvised mouse pad too!

Have a Happy Thanksgiving.ReplyCancel

I so know what you mean. I, too, am thankful for a special child who was patient with me while I adjusted to our normal at different times through his life. So excited for Lamp! ReplyCancel

This post came right at the perfect moment for me. Thank you for sharing your honest feelings. We are gearing up for some positive but scary changes for Maaike as well. I am finding that she is ready for things that I am not. I was so grateful to read your thought processes and positive outcome. It does indeed take a village, even a virtual one.ReplyCancel

As always, Miggy…thank you so much for your honesty. I love the pictures of her with from behind with those curls of hers.

You chose a great color! That is crucial 🙂ReplyCancel

As always, your pictures capture the true beauty and essence of moments, and not mechanics and machinery! Coupled with your words, you tell your heart so perfectly Miggy.

We are carried through this process, one trying step at a time, aren't we? I can so relate to your words. I remember being in the hospital and letting so many painful words glide right over the top of my head…as if they could not possibly become a reality. Or even if they were to, my brain would not even come close to handling them at that time.

But then they finally make their way, and I find it funny that it's never Aviana that is the un-accepting one, but it is always me standing in my own way. For me, it is not necessarily the equipment type things, but one small example is over the years…I have finally found it hard to go to birthday parties. Where there are numerous kids around Avi's age. All the ones she used to play with. It's hard to see their moving parts, functioning brains, the party bags, opening presents, gathering around the cake, singing, the bouncy houses, the working limbs, and especially the smiling faces….and all at once. All of the very things she possess none of….the hardest part…she cannot show one happy emotion, not even a smile.

So, for her sake (because she would most likely enjoy the party, in her own way) I can't seem to step out of my own way. I used to, but I learned that it would destroy me. So I do things on a smaller scale for her, but still – I wish I could move out of my own way for her in those types of areas.

I think you are amazing for striding beyond, yet another step, and looking for all of the good that has come out of this for Lamp. I love looking at the pictures and seeing all that she is doing and experiencing – in her world, with her sister, with all of you!

Love,

Jen ReplyCancel

I say this all the time, but I love how well you convey your thoughts here. I totally understand what you mean by all your apprehensions. I'm so happy for little Lamp. Tearing up at big sis helping on the computer. You have such a sweet little family.ReplyCancel

I love the way you write. So clean. And I miss you, my friend. Hope all is well in your world. Both of those girls are THE best.ReplyCancel

That's why I love my husband too…he can make anything. Kyle made our bed before we got married, and we had the same dilemma as you, where we needed storage. He made four wood drawers that slide under our bed that we can store stuff in. They are really basic, but you can't see them and they are awesome for storing clothes or whatever you choose. ReplyCancel

Not necessarily the best solution, but I have hooks on the wall by my washer & dryer, and each of us (even the littlest kid) has a robe there. People go to that spot & disrobe, put their dirty clothes into my laundry baskets (thus eliminating sorting 6 people's worth of laundry for me!) and put on a robe.

They have to walk back there to return the robe, after they put on their jammies (or whatever) in their rooms – but it works. We have occasional nakedness streaking through the house, but we are okay with that. :>ReplyCancel

I like the look of stools or chairs as bedside tables – it keeps things informal and fun. My bedside tables are built-in bookshelves under two windows that flank the beds… and I hate them. I wish I could have a separate table and change up the look, but the hubbers enjoys the no-work aspect of leaving them. 🙂ReplyCancel

We have really cute plant stands as our bedside tables! One is three tiered for extra space for books/magazines, the other is just tall and…slender? For lack of a better description.
Jessica from MOReplyCancel