October 24, 2011

Chivalry still lives.

I was reminded today by one of the house moms at Erik's group home how much Erik blesses others by being polite, especially to the ladies.   House mom Barbara told me that Erik watches for her to arrive at the home every morning just so he can jump up and hold the door open for her.  So sweet.  Isn't she blessed?  It reminds me of the countless times Erik has done that for me and every other lady he's around.   Many times over the years when we were about to dish up our food or go into a building Erik would say, "Yadies first" (L sounds were hard for him).  He would extend his arm and smile, urging the ladies to proceed as if he had all the time in the world and wanted you to feel special.  He's a gentleman and enjoys being one, even today with his faculties fading.  That just makes me happy.

October 13, 2011

Best laid plans

     It's that time of year again, when our family plans Erik's holiday visits. His group home closes during the holidays so we go get him and bring him to family -- in either Dallas or Houston. This year our family in Dallas will have Erik's company at Thanksgiving and my sister and brother in Houston will have him at Christmas.  Erik's already looking forward to it, he loves holiday time.   
     Last year the holidays were a blur, a very crazy blur. Erik was in Dallas for Thanksgiving. We had a wonderful Thanksgiving meal at our Dad's. Erik hung out with us all but I noticed that he wasn't glued to the Dallas Cowboy game as in the past. I'm sad he can't follow the game like he used to. He was very quiet and detached.
     And then Christmas came around and we were planning to take Erik with us to San Antonio to spend the holiday with my husband's family.  Erik had never been there so I was a little concerned the unfamiliarity of the surroundings might be hard for him but everyone in the family assured me they'd help him feel welcome and ok.  During the nights, Mike and I were going to stay with Erik at a hotel near my in-laws.  We had it all worked out.  Then, the day before we were to leave for San Antonio, our son came down with a really bad stomach bug, really bad. (earlier that day he had gone to a cajun place and eaten alligator. Yep he really did. We later discovered it wasn't that that caused his bug. But he learned that he'll never eat it again)  We were up with him most of the night. Erik was sleeping in our son's room on a mattress on the floor so we put our miserable, sick son in our daughter's room, and the rest of us played musical beds so, hopefully, no one else would get sick.  Ugh, please, no one else get sick.  We (I) do not do well with digestive issues.   
     So, we were wondering if we should even go on our trip.  Then my dad and stepmom did a wonderful thing.  After hearing what we were going through, they said they would come pick up Erik, keep him with them and take him back to the group home after Christmas. Wow.  I will forever be grateful to them for volunteering to do that. 
     We did make it to San Antonio and we made it to the Christmas Eve service.  After a while our son started to feel more like himself and then...our daughter caught a respiratory cold that wiped her out, and then... in the wee hours of Christmas Eve my husband came down with the symptoms of that horrible stomach bug, and it attacked with a vengeance.   If we had had Erik with us in our hotel room that night and all the following day I don't know what we'd have done.  If Erik had caught that bug...I shudder to think. It was a divine provision that he was back in Dallas.  My hubby and I spent all of Christmas Day in that hotel room, trying to make it through the day.  I didn't catch the bug (thank you, Lord) and when we finally all got together again at my in-law's house we were a very bedraggled bunch.   Christmas Day in hotels is very lonely and quiet, especially when family and festivity is 10 minutes away.   
     I'm learning to accept what the Lord brings. We make our plans but ultimately His purpose prevails. Aren't there 2 verses in Proverbs about that very thing?  Yes, Proverbs 16:9 and 19:21. He's in control.  When I trust Him things work out better.  So, I'm already telling Him I'm trusting what he brings this holiday season.  I'm trusting that Erik will have a good time.  
     And I would love to have holidays with NO you-know-what.

October 5, 2011

"Has Down syndrome hurt us?"

Hi again, friends.  I'm still here.  I know, it's been a while since I've
posted anything.   Everything's fine and Erik's fine.  I've just been 
wondering what to include on this blog that I haven't already written.
I've kind of run out of "Erik stories" ... for now.   
Then today I saw this article so beautifully expressed by Amy Julia 
Becker, mom of a 5 yr-old daughter w/ Ds.  I love her description 
of recounting the stories of her children's birth, and deciding to tell
Penny more about the day she came into her life.    
She is 'right on' in her view of the cultural attitudes associated with families
like hers. She asks the hard questions:  Is a life with Down syndrome a life
worth living?  Is the burden such a life places on a family and society
too great?
Honest and inspiring, so I share it with you.

October 3, 2011, 1:10 PM

Has Down Syndrome Hurt Us?

Of the growing genre of eloquent parents describing what it takes to raise a child with a disability, Amy Julia Becker is one of the best. She has writtenoften for Motherlode, about how Down Syndrome means life for Penny is different, and exactly the same.
She recently published a memoir of her family’s tale, called “A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny.” To commemorate the moment I asked her to write here for me one last time, about the question every parent asks in one form or an other at the start of the journey.
By Amy Julia Becker

When a car trip gets too long, when they are stalling before bedtime, on a rainy day, my kids ask me to tell them the story “’bout when I was born.” They can recount many of the details: that William’s head was very big (they giggle every time I explain that the obstetrician had to vacuum him out) and that we had to wait and wait and wait for Marilee and that for all three of them I got medicine to make me feel better when we went to the hospital. They know that their dad and I spent three hours getting Penny’s nursery ready before I called the doctor. But for a while, when I told Penny’s story, I left out one crucial detail. I didn’t tell her what happened two hours after she was born, when a nurse called my husband out of the room and he returned with wet eyes and a sentence I couldn’t comprehend: “They think Penny has Down syndrome.”
Earlier this year Penny and I were alone as I retold the story again, and I decided it was time to let her know that the day of her birth hadn’t been all rejoicing and ecstasy. I got to the end of the familiar narrative and I added, “After you were born, I was scared, because the doctors told us you had Down syndrome.”
She cocked her head to the side. “Why you were scared, Mom?”
“I was scared because I thought Down syndrome would hurt you,” I said. I paused, knowing I had only told part of the truth. “And because I thought it would hurt me.”
“Oh.” Penny blinked her eyes the way she does when she’s thinking hard about something.
My thoughts moved back to the wave of fear and sadness and anger that had engulfed me in the hospital, the darkness that lifted only when Penny was in my arms, when I stopped worrying about the years ahead and instead gazed at her pudgy round cheeks and waited for her deep blue eyes to flicker open and believed for just a moment that everything would be O.K.
And, five years later, everything is O.K. My fears about Penny’s condition were largely unfounded. She hasn’t suffered major health complications and it has not been difficult to love her. I can even say that I’m grateful to have a child with Down syndrome because through her I have learned to value more of my fellow human beings than I might have if I had given birth only to “typical” children.
But I haven’t told Penny that the general cultural perception of Down syndrome continues to hurt us all. The hurt comes in two forms. One, the well-meaning but simplistic pronouncement that people with Down syndrome are “sweet and loving angels.” This attitude dehumanizes individuals with Down syndrome by assuming they can’t and don’t experience the full range of human emotions and needs. A similar hurt comes in the statement I heard all too often when Penny was first born, “God only gives very special parents such special children.” Down syndrome became a litmus test for my parenting skills, but I was well aware that I didn’t know anything more or have any greater capacity to love my child than the woman who gave birth in the room next to mine.
The other way that cultural attitudes toward Down syndrome hurt us is through the assumption that individuals with Down syndrome and their families would be better off not living at all. At this moment, most women who give birth to a child with Down syndrome do not know about their child’s extra chromosome until he or she is born. Only 2 percent of all women seek a definitive diagnosis of Down syndrome or other chromosomal abnormalities through amniocentesis or chorionic villa sampling during pregnancy. But of the women who receive that definitive diagnosis, the vast majority (90 percent) choose to terminate their pregnancies.
Recent advances in prenatal testing include a non-invasive blood test for all pregnant women with 98 percent accuracy in diagnosing Down syndrome in the ninth week of pregnancy. It’s not the test that bothers me, nor the desire to prepare well for the birth of babies. What bothers me, and what hurts our family, is the perception, often reinforced by doctors, that a life with Down syndrome is not a life worth living, or that the burden such a child places upon a family and society is simply too great.
Penny starts kindergarten this fall. She will be learning to read and play and paint and use the computer and express her feelings alongside her typically developing peers. She will help me out around the house by “folding” laundry, by setting the table, by making her little sister giggle as I prepare a meal. She’ll frustrate me when she refuses to go to the potty by herself or when she yells at William or when she whines about not getting her way. We’ll snuggle on the couch and she’ll sound out words on flashcards, with a flush of excitement rising to her cheeks when she figures one out and says, “I can do this, Mom!”
In that moment a few months back, when I finally added Down syndrome to Penny’s birth story, I took her chin in my hand so I could look into her eyes, now a sparkling green with a dark blue outline. I said, “But Down syndrome didn’t hurt you. And it didn’t hurt us. So we didn’t need to be scared anymore.”
“So then you were happy?”
I reached out my arms and gave her a big hug. “I couldn’t be more happy that you are my daughter.”