Monday, April 16, 2012

Family Update 4/15/12

Peter is doing well....and no news is good news on the spinal. He did get quite a bump in the amount of chemo he has to get and the first few nights were rough - waking up, dry heaving some, but generally just uncomfortable. Fortunately it has got better and we've got through a couple of nights were he will stay in his bed. John is being the strong one! When Peter wakes up he will give him a drink in his bed and get him to lay back down. So far so good.....we were just talking today that maybe we can think about moving him out of our room some time in the near future. Would be so nice to have an adult bedroom again! We'll think about it again after school is out.

What is most exciting is that little man seems to be really taking off with working on vocalizations! I will swear he hugged me and said "I love you" as he squeezed tight. No prompting in the world has got him to say it again.....but I know he did say it!! He has been using "I do" and "I did" this week, in addition to sounds that are clearly efforts to put one or more words together. Yes, I am still in that overwhelmed state but pushed to start The Listening Program with Peter. I decided to go with the least intense to start off with - 15 minutes a day. We made it (by stretching our imaginations) to 8 minutes on day 1. Then none on day 2 and loud NO!! on day 3. So we decided to not worry about time and logs and stress - and let him just listen as much as he wants until he gets used to the headphones which are huge!! And it seems to be working. We have stayed on the first module that is classical music with nature sounds overlaid. He calls out when he hears the birds, and just listening to the music he starts to make sounds - singing, talking, humming - all good! This is complimented by Peter's imaginary phone conversations that he really enjoys.....he opens up our "I don't have a real place to be stored" drawer in the kitchen, takes out John's old phone and walks around conversing up a storm. When he is done, he closes the phone up and puts it away. Today at church he was really enjoying the music and can clearly sing "alleluia". We enjoyed a breakfast at church and it warmed my heart to see Peter playing with the other kids - chasing, waving, dancing and more chasing!
Gretchen continues to be his best buddy. So often I get asked if they are twins, and in so many ways they feel like it. She is however the constantly on the move, multi-tasking, high energy yet nurturing little girl. I took a great picture of her in the car this weekend - while Peter plays with John's old phone, G plays with my old Blackberry. She talks and texts all at the same time! So sitting looking so cute in the car - her baby in her lap she was the picture of a multi-tasking little mommy on the go! She accumulates things too.....those valuables she can't go with out..... right now it involves whatever electronic is tickling her fancy at the moment, her baby that looks like it has been well loved for 100 years, and the Cars book we got at Costco a few weeks ago but looks like it has been read by 100 kids. Of course, anything Peter has or wants becomes at the top of her most-wanted list! The two of them had a great time yesterday. We spent hours running around Mr Biggs. It is a fun center here in town that is closing down - but it has a portion that is for little kids - it is like a village with a garage shop, a bakery, farm, fire station, and so much more. They weaved in and out of each nook and cranny having a great time! While Peter is a man on the go, fortunately I can coax Gretchen into following me when we need to take off after beat the times they have decided to run off in opposite directions and not respond. Then the decision becomes - who can you catch faster and then do a 180 and chase after the other before they get hurt. Thank you God for letting G get to the point where she follows at least some instructions and has embraced her role of chasing after Peter too!
Mr Biggs was a lot of fun - it was actually the event I organized for Michael's class this weekend. The boys were in and out of the laser tag most of the time, plus arcade games, go carts and just hanging out. It is very rewarding to see Michael having a good time with a group of boys that he has been able to build a good relationship with at school - and see it continue to blossom out of school. Many of these boys started off at the school with Michael, and take great pride in knowing they will be the first class to graduate who completed all their years at the school.....a badge of honor they all enjoy! They are goofy, and funny and make me wonder when they say things like "you didn't hear that did you Mrs Krause?" For the record, I did not stalk the boys or run after them.....I was more strategically positioned to just make sure no one went missing. Why you ask? well, i didn't want to embarrass Michael (or Mike as he insists on with his friends) - I was exhausted from sitting in the bleachers for Jack's wrestling tournament.
Oh goodness it was a long week. There was an "incident" at practice on Tuesday that got horribly blown out of proportion and then mis-represented to the school principal. Jack was kicked off the team which crushed his spirit. After various conversations, interviews, etc Jack was put back on the team. He vowed to win gold this year - and that is exactly what he did! It wasn't easy as he had two strong opponents. He almost pinned one several times, and the other took Jack to overtime. But at the end, his hard work and perseverance paid off and he got the gold medal. We are very proud of him!
My proudest moment came however off the mat. During the tournament there was a young boy, about Jack's age, from another school who suffered a crushing defeat in his final match. The boy sobbed in the ancillary gym where the medals were being handed out. What made this boy stand out was that in addition to sobbing in a way that broke your heart, his face had deep purple birth marks that covered a good half of his face. I could easily see how many were slightly uncomfortable and did not know what to do. Thinking he was hurt, I asked him if he was ok. His dad turned and smiled, and the boy just nodded he was not hurt. Jack could tell the tears came from a painful defeat and a gold medal desperately desired but horribly lost. He stood next to the boy rubbing and patting his back as he tried to comfort his ego. At that moment in time I know Jack didn't see the deformity in the kids face, but just a fellow soul who needed to be acknowledged and comforted. I was proud of him! I share the story because so often we have to address Jack's passion misdirected, but this was on of Jack's glorious moments where his passion is directed towards compassion. So proud of you Jack!!
Also very proud of Alexandra - the budding golfer in the family. She and John have been training hard. She is frustrated she has not yet broken 100 but continues to hold on to the goal. She shot 111 again at the varsity tournament this week. The JV was cancelled due to weather - but she said for the time she played she was doing even better. More to come this week! In addition, this week is her induction to The National Honor Society. Alexandra was selected to be an "Ambassador" of her school and is excited to be participating in various events coming up. She was also selected for "Campus Ministry" which she was the most excited about. She had applied for that position months ago so when the results were finally published it was that celebration but also relief of the wait being over. Still getting driving hours in.....and I can't wait till she can go to the store to pick up milk and a Starbucks without needing an adult in the car! :)....."baby - get me a venti 'bucks please!" .....oh I can't wait!!
Last but not least by any means is Tommy. He is living the dream! Loving school and loving having kids to play with in the neighborhood. We have two kids around his age that moved in next door and he plays with them pretty much every day - generally it is hours in the backyard. There is still his best gal buddy several houses up who loves to walk Angel (our dog) with him. I, of course, love it that I get e-mailed or stopped by the moms and grandmas to tell me just how sweet he is, and how glad they are to have him as a friend for their kids. Warms my heart! Now that spring is here he will be starting tennis and I know he will be very excited!
The week has been crazy busy! In all my free time (I took Friday off work to make it happen), I was co-organizer for an appreciation dinner for the Colorado Springs Down Syndrome Association. It was stressful leading up to the event but it went off without a hitch! We had about 50 volunteers and sponsors at the event. The theme was "Welcome to Holland" based on the poem about parenting a child with special needs. The room was filled with tulips and had a spring like feel to it which felt warm and cozy as the evening progressed and the room was lit by candle light and little white lights that framed the windows with amazing views of the mountains changing colors as the sun went down. I love our downtown area!! So I am going to end this post by sharing with you this beautiful poem that I know has touched so many lives. We all have our own journeys, our own path to walk down, but as a parents of a child with special needs I think there is a thread that binds us together - we know that while others may pity us, our little secret is that we are blessed beyond our wildest dreams! until you've experienced that unconditional love, it is hard to explain why this journey we never knew we wanted is not only awesome, but we wish for others to share in it too. We are so blessed!!
WELCOME TO HOLLAND by Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Love -