Tuesday, July 28, 2009
Wednesday, July 15, 2009
Tuesday, July 14, 2009
Monday, July 6, 2009
Sunday, July 5, 2009
In between the parade and fireworks I made 12 quarts of rhubarb juice. Yum!
Off to the fireworks to meet up with DH's brother, his wife and little boy. We played catch, rollerbladed, threw beanbags, lit sparklers...all just to pass time until the fireworks began. Little Ray, who isn't so little anymore, 5 days till he's 5, snapped pictures of DH, Little J and I. Pretty good job, I think.
Sunday rolled around and we slept in a little (till 8am) and went to late church. Stopped by the grocery store to pick up a few last minute items for Grace's trip and then packed and did dishes most of the afternoon. Here she is all ready for the Boundary Waters for 5 days. How she's going to carry that pack along with a canoe over her head on a 1/4 mile portage, I'll never know.
Now for the week to begin so I can relax...NOT! I have 1 minute to officially post my Weekend Wrap-up before it's not the weekend anymore. I hope all of you had a terrific Independence Day weekend and I'll be back before too long to share what I know about encouraging sitting in a baby with Down syndrome.
Thursday, July 2, 2009
Tears and laughter. Happiness and Sadness. Despair and Triumph. I felt all these while reading, but now I'm drawing a blank. I read the book so fast and felt so many emotions, but how to sum it all up in a few paragraphs is making my brain work in overtime. Little J is quickly appoaching 1 year old and reading Soper's book was a wonderfully refreshing way to take a trip down memory lane. My experience was different than hers, of course. Yet the same in so many ways. Boys for both of us, Down syndrome diagnosis, NICU stay, feeding tube, breast pump, feelings of despair, feelings of intense love, strong desire to protect our babies from the world. The list goes on - a full year worth of shared experiences.
Many times while reading Soper's book tears would fill my eyes and usually roll down my cheeks. The kids would badger me about my crying, "Are you reading that sad Down syndrome book again?" "Why do you cry when you read books about Down syndrome?" Yeah, why was I crying again I asked myself. The book's not sad. I'm not sad. After a little self reflection, I realized I was crying because I had been there. I had experienced the intense feelings of anger and gratitude that came from people helping us during the early weeks of Little J's life when we were tethered to the NICU and clinic and newborn weight scale. I cry because I feel validated for feeling anger and selfishness and pity and love and happiness and protectiveness all at the same time. I cry because Mrs. Soper and I are survivors. Survivors of the Down syndrome lifestyle. The frequent Drs. appointments, physical therapy, audiology appointments, well meaning comments that sting, individualized family service plans, thoughts of our babies' dying. All part of the first year of life with a baby with Trisomy 21, an extra chromosome.
If, like me, you've experienced any thoughts that brought about guilt during your child's first year and have pressed on, this book will be a welcome read for you. Kathryn Soper articulates the process of coming to terms with her own feelings towards and about her son and his future in a way that is refreshingly honest and painfully real. Her subtle bits of humor were welcome as well. Because if you can't look back on your life and laugh a little...well, then all you'll do is cry.