Wally

It has been wondered, not proved, that Down Syndrome may be passed on genetically. So I called my Grandfather and asked him to tell me a little more about his nephew, Wally. Wally was my second cousin who had Down Syndrome. Here is his sad and happy story.

My great Uncle Walter and Aunt Ada Hinebaugh had three daughters and longed for a son. So at the age of 42 Aunt Ada had Wally. When the news of his Down Syndrome got to their very conservative church tragically they were asked to leave the congregation. I can't imagine the pain they must have felt; After the news of their sweet little baby having Downs and then losing their friends, their whole community and what should have been their support and comfort must have been more than they could bear. Aunt Ada was in school at the time of Wally's birth. She decided to change her major to Special Education. After graduating she started many programs for children with special needs and ended up in "Who's Who In America"!

When Wally was young there were no therapists that would come and work with your child at home. Because of this Walter and Ada decided that it was best for Wally to live in a group home that would provide him with the services that he needed. Wally enjoyed it there and would even want to return to the group home after Christmases and Summers spent at his parent's place. He found life outside of the group home too fast-paced.

Wally was able to speak and even learned how to play the guitar until later in life. One day at the group home he was encouraged by one of the workers there to get some fresh air out on a second story balcony. Unfortunately while out there he got locked out. In trying to get back into the building he fell off the balcony. So very sadly Wally spent the remainder of his days as a quadriplegic. Wally lived until the age of fifty-five.

"I Don't Like Him"

Silvi, Ian and I went over to a friend's house yesterday to welcome her new baby boy. While we were there I noticed her three year old studying Ian's face real intently. He then said, "I don't like him." I couldn't believe it. I just froze. He then continued to play, but returned a few moments later to repeat, "I don't like him". I felt like crying, but didn't. I instead asked, "Why?". The boy's sweet Mom said to him, "Well, I like him", Silvi chimed in and said the same thing, as did I.


Note: I've noticed that my Blog entries of-late have been kind of downers. I promise my next entry will be a lighthearted one! ;0)

Don't Look Back

We went to a kids train store today for story time. There were tons of kids, most of them sitting and enjoying the story, but not my active Silvi. She always needs to be on the go exploring, just like her Dad! Anyhoo, as I was following Silvi around I was holding Ian facing behind me. As I walked toward a woman she saw Ian's little body and commented, "How cute". I smiled at her as I passed her but didn't look back to see the expression on her face when she saw that my boy has Ds. It's hard because I want everyone to love Ian just as I do. He fills my heart with such joy, such love. It hurts when others can't see him the way I do.

Breathe

Life just seems to build to a crescendo sometimes and I then dig in my heels, grit my teeth and keep going. Maybe it's my conservative Christian upbringing that leads me to this modus operandi. Why do I keep going when what I really need to do is to step out of the "running stream" and STOP and take a deep breath. What breathes life back into me is being alone. It's amazing what one hour by myself can do for me. I feel physically lighter. I'm able to smile freely again, to give again to my husband, my daughter and my son. I just NEED to remind myself to take that time out that is so vital for myself and my relationships.

I Punched The Car Twice!

I still have my boxing gloves on after last night's rounds with Silvi. Here's what lead up to the match...It took a long time to convince Silvi to go to the monthly Ds group last night. We're new there and she hasn't spent much time at all in groups without Mommy and Daddy present. Finally she agreed to go right when Ian and I were heading out the door. Tom had to stay home to write a script (yeah right! ;0) Love you Babe!) So, I was a single Mom taking the kids to the group. I felt great success at getting the two kids to go. I feel it is very good for Ian to be around other kids with Ds and for Silvi as well. I also think it is helpful for Silvi to get to know other kids with siblings with Ds.

We finally got to the group after the 15 minute scramble to get coats on and get out the door, into the car, into the stroller, into the building, yada, yada, yada. So we made it! Then the tears came from Silvi, not just tears, but desperation. I hated leaving her, but I'd introduced her again to the teachers there and told her that I'd check on her in a bit.

One of the other Mom's had kindly taken Ian into the room next door where the parents meet. Ian was making that loud noise he makes when upset. But I couldn't attend to him quite yet, I had to get the brownies out. I somehow was the only person who brought treats last night. I thought I'd then check on Silvi, so I peeked in the playroom only to have the teacher tell me that Silvi needed to come with me; She'd been sobbing the whole time, poor girl. So we headed back into the parent room, I got her settled on the floor only to then think that she'll need some books to occupy her. So we headed back into the kid's room, got books, got her settled onto the floor next to me, grabbed Ian and started feeding him some pears. He let out his noise again after a few bites (he's not that into food yet). I then needed to figure out what to do because I was sitting next to a fellow and didn't feel comfortable nursing in front of the group. So we yet again had to get up in the midst of the group and relocate to the far side of the room behind a bookcase which partitioned the room. I commence nursing Ian as Silvi got increasingly bored and was getting into anything she can, yelling "Mom look at me!". She actually stuck her finger in an electric pencil sharpener behind me. Luckily it didn't nip off her fingertip!

Needless to say things were not going well and they were only going to get worse! The group finished up. The teachers always usher us out of the building quickly. I guess we are only allowed to be in the school for an alloted time or something. So I felt pressure to get out of there, but, the brownies were in the parent room, the diaper bag at the other end of the room, our coats and stroller by the lockers in the hall and Silvi was wandering around all three places. Luckily another kind Mom gathered all our things for us and we were ready to go...or so I thought. We headed towards the elevator and Silvi took off full tilt down another LONG hallway. I ran after her. My girl is such a fast runner, I had to run my fastest to catch her. By the time I caught up with her I was LIVID! I picked her up and told her that I would take away her pacifier until we got home. Her pacy is her most prized posession! We then walked back to the elevator and strapped her in the stroller with Ian (luckily the nice Mom had stayed with Ian this whole time). Silvi, of course, kicked off her shoes and took off the jacket we'd already put on her.

By this time we were the last to leave the school. We finally made it to the car and I was feeling that I had triumphed over my high-spirited daughter. I am the Mom after all! My glory was short-lived. I had to carry Silvi into her carseat because she had no shoes on. The car next to us was parked too close and I couldn't open the door all the way. So as I was in the process of putting Silvi in her carseat she banged her upper lip on the car door. Disaster! Her lip split and bled. I felt terrible for her, but I also felt terrible that I had lost the battle. I caved and gave her her pacifier. She had won. I slammed the door shut and punch the side of the car twice! I was SO frustrated! I got Ian and myself into the car and tore off down the road. I drove home as fast as I could. We finally got inside the house. Tom could see on my face that things did NOT go well. (He had cleaned the house while the kids and I were gone knowing the night was not going to be a fun one for me. He's a sweetheart that way!) After we got the kids down to bed he asked me about the night. I just repeated over and over, "I don't want to talk about it! (I did eventually cave and told him the story I just told you!)