[tri-wings] what a day

What a day!
 

I finally found some one to take Rebecca?s hospital bed, it went to the
association for community living for a respite home for children ( the
association for community living is an association that was started by
parents about 20 odd years ago to get their intellectually disabled kids out
of instutions and into the community, they have group homes and as well
support indiduals  in foster homes)  it does my  heart good as apparently
they have 3 kids waiting for respite but they had no bed. Any way they came
today, but it was the oddest feeling as they men that came hardly talked or
looked at me, I guess they know why I am able to donate this bed :0(  anyway
so this made me cry when they left with the bed, next I took some of
Rebecca?s clothing to the used clothing store, its new as the one I was
known at closed down, when I brought in this large amount of clothing some
new with tags still on ( last years Christmas gifts) the lady remarked that
? someone must have had a growth spurt? as I was browsing I pretended not to
hear her, when I was closer to her she repeated it,   I kind of choked up
and told her that we had lost our daughter who was disabled earlier this
year, I explained that I was touchy today because they had come for her bed
eailer today, the woman hugged me and asked about Bec?s disability I told
her she had Trisomy 18 and started to explain , the women stopped me and
said that she had in the past worked for community living and they had done
some research and she was familiar with Trisomy 18. and of course after I
told her Rebecca was 14 ½ and the original prognosis was less then a year I
got the standard ? you were so lucky to have her for so long?  I always want
to scream IT WAS NOT LONG ENOUGH but I don t and I smile and agree as I know
they are only trying to be supportive ( oh the things we learn not to say in
this Trisomy fun park) next I come home and check my email and there is the
post from Karen  ?I wish I said that? well that made me cry.  Then Glenn and
I went to Belleville ( an hour a way) to see Mark as he wanted his knee,
wrist , and elbow guards so that he could ride his new skate board that he
won at the auction at the Easter seals bowl a thon last Saturday ( that is
another story) so we went down and took him out to dinner when we were
waiting for our order I had just finished telling Mark how was getting the
equipment and I looked up and at the next table in front of us was a family
with 2 young disabled girls  ( looked like they had CP) I couldn?t take my
eyes off them!  I am sure the mom thought I was weird.  When we were done I
went over to the table and told the mom I though her daughters were
beautiful and that they reminded me of my daughter, she rewarded me with a
huge smile and a thank you. On the way home I was thinking about it, Karen?s
post, losing Rebecca ECT.  When we got home I talked to my MIL and realized
that before Rebecca I would never have told a complete stranger with two
disabled daughters that they were beautiful, I would have felt sorry for her
rather then envied her for still having her angels

 

Susan mom to Rebecca t18m 06/06/91 - 05/02/06 and Mark age 13 1/2 ADD/LD

 


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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