3 little Miracles

3 little Miracles

Friday, June 10, 2011

Show Us Your Life - Our life with Down Syndrome

Our beautiful daughter Rachel entered our lives almost 8 months ago and with her also entered an unwelcome family member . . . . . Down Syndrome.  I know it seems a little unkind to say that something that IS a part of my daughter and always will be is unwelcome in our home, but it isn't what we planned for OR dreamed of and to say otherwise would be a lie.  So now Down Syndrome is the sixth member of our family and  our lives will be forever effected by DS.  Maybe one day I will say that DS ended up being a welcome member of our family and was a hidden blessing. 
I wish I could go on and on about how much we have accepted DS in our lives, learned a lot about it, and have become amazing activists for awareness, but for me it is still an intrusion on the dreams I had for my daughter and down deep I still hope it will be minimal in our lives.  I keep looking on the NDSS page to see how I can get involved and where a Buddy Walk near us will be in October (we would love to do the one in NY in Central Park but we can't afford that trip), but I have yet to plug in or become a part of a support group as our health coordinator and PT have suggested that we do, I guess I am just afraid to give full voice to some of my feelings.  Please don't get me wrong, I love EVERYTHING about Rachel from the top of her head to the tips of her sandal toed feet.  BUT, I do wish that she wouldn't have to deal with DS in her life as she grew up and likewise I wish we wouldn't have to deal with the years of physical therapy, speech therapy, and occupational therapy that is or could be in our future as Rachel develops.  I would rather wait for the normal developmental milestones from rolling, to crawling, sitting up, saying her first words, etc. without the intrusion of someone in our home guiding us on the best ways to help Rachel reach those development milestones and someone monthly coming into our home to go over Rachel's health needs, I just want to raise my child. 
At the beginning of Rachel's life DS took a back seat in our concerns because for three weeks Rachel had some serious medical issues that kept her in the NICU, I didn't want to talk to someone about DS education, I didn't want to meet people who had been where we were.  I just wanted to sit by my daughter's side and watch her breath . . . . . and deal with the grief of loosing some of my dreams for Rachel by myself.  Once the urgency of Rachel's health had passed and we finally had her home I had to begin to deal with my feelings about DS.  Although they say that there isn't anything Rachel can't do or accomplish because of her DS there are some things I have a harder time picturing Rachel doing that I had dreams of . . . . . marriage, becoming a doctor, professional ballet dancer, Broadway singer . . . . . yes I know those are BIG dreams.  But that is what parents do, have big dreams for their children, but with most children there really is no limit to what they can accomplish in life except for themselves, for Rachel her DS development over the years could limit her speech, physical, or mental abilities and therefor limit the things she can do.  SO, I obviously still have moments when I deal with my feelings about these things BUT most days I simply enjoy the joy of Rachel in our lives and the smiles she brings to our faces.

Rachel truly is a happy baby and overall her development is going well.  Currently she is rolling really well, but she really fusses when we try to make her use her core muscles to sit on her own.  The PT is getting ready to bring something called a butterfly chair to help her sit up and begin to use her core muscles and she may start working with Rachel twice a month verses the current once a month.  So for now I enjoy the blessing of Rachel in our lives daily and take DS in our lives one day at a time.  I pray that as the years begin to pass by I can gain a positive attitude like some of the amazing bloggers and parents to children of DS that I follow, until then I am allowing God to give me the strength to deal with my feelings and try to learn as I go.

Friday, June 3, 2011

Show Us Your Life - Favorite Appetizer Recipe

Ham and Cheese Sliders
adapted slightly from the Recipe Club

24 good white dinner rolls
24 pieces good honey ham
24 small slices Swiss cheese
1/3 cup mayonnaise
1/3 cup miracle whip

Poppy seed sauce (you probably could half this...I had plenty extra)
1 T poppyseeds
1 1/2 T yellow mustard
1 stick butter, melted
1 T minced onion
1/2 tsp. Worcestershire sauce

In a small bowl, mix together mayonnaise and miracle whip. Spread onto both sides of the center of each roll. Place a slice of ham and a slice of Swiss inside of each roll. Close rolls and place them into a large baking dish or heavy cookie sheet. Place very close together.

In a medium bowl, whisk together all of the poppy seed sauce ingredients. Pour evenly over all of the sandwiches. Let sit 10 minutes or until butter sets slightly. Cover with foil and bake at 350 degrees for 12-15 minutes or until cheese is melted. Uncover and cook for 2 additional minutes. Serve warm.