Tuesday, December 31, 2013
Quick end of the year review
The year started off in us (finally) moving in to our own house. It still is a work in progress, but it's home. We had a lot of fond memories of our past here. Jimmy kissed me for the first time in the kitchen, and I told me he loved me on the front steps. Our kids will grow up here and as a family we'll make a lot great memories of our own.
Quinn Avery was born in March, and is completely typical. She has a great personality and loves to be the center of attention. She's in the process of learning to crawl, and can do so successfully backwards. It took Spencer a long time, but he's finally gotten used to her and seems to enjoy a playmate.
Spencer has come a long way. He is learning to use his wheelchair independently and is still working on walking. He can use a walker, but doesn't like to. He cruises around furniture like crazy and is in everything. He hasn't had any surgery this year. Also, his biggest achievement is becoming independent from his feeding tube. It's looking like in 2014 he will become tube-free. He also started school, which he adores.
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Hi Rachel,
ReplyDeleteI just read your article in Complex Child and I loved it. I have a child with special needs (blindness, microcephaly, feeding tube....) and I get so many comments about trusting in God and God's Will and how strong I am that really don't help me at all.
I often feel those comments make light of our situation when things were really hard and my son was having lots of surgeries. I know that people just don't know what to say sometimes.
I just feel that in the special needs community there is such a big push about religion that it's nice to see another perspective.
Anyway, just wanted to say Hi. You don't have to post this but I didn't know another way to contact you.
Hi Rachel, I also just read your article.Thank you for your honest and open words. I have not been down your path, however, I do work at a school with 48 precious medically fragile children who come from the most amazing, loving homes like yours. I'm quite sure that over the past several years as a school nurse, I have been careless and insensitive in my words, and I need to ask forgiveness for that. I have not walked in your shoes, but I do have a strong desire to say the right things to parents, and to know when to say nothing at all. I would, however, like to write a short comment to you in the most gentle and loving way possible, a comment you are absolutely free to completely ignore. My comment is simply that God is a Father who knows very well what it is like to see his son in great pain. When I am hurting, it helps me to think about that. If I have said the wrong thing, or if I should have kept silent and not written this note at all, please forgive me.
ReplyDeleteHi i read your story and i have a daughter whos disable, when she was born she has complication eating cause she had a small jaw, so they placed her g tube and now she 7 and it has bin removed she pulled it out , now i could put it back but she doesn't need it anymore she learned how to eat, but now it looks very irritated and itches alot, cause it leaking to much , i was going threw the internet to see whos going threw what my kimora is going threw and i saw the story of spencer and almost exact what i go threw with kimora, and its bin really overwhelmin cause i start feeling helpless , but i heard i shouldn't be concern yet to give it two weeks and if its not closed
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