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Friday, January 30, 2009

Inspirational Story....

The following appeared in the Prince George Citizen Newspaper. Thanks Darlene ~ you are a true inspiration for all children with Cornelia de Lange Syndrome.

Idaho trip ahead for Special Olympian
Written by TED CLARKE
Citizen staff
Tuesday, 27 January 2009

Her coach tells her she needs to work on putting on a friendly smile for the judges. Darlene Jakubowski isn’t too worried about that. She’ll be positively beaming if she skates to the best of her ability at the Special Olympics World Winter Games, Feb. 7-13 in Boise, Idaho.
She’s one of three B.C. athletes on the 15-member Canadian figure skating team, and Darlene is shooting for the stars.
“I want gold,”said Darlene.
Aside from the competition, the 16-year-old from Fort St. John is looking forward to meeting new friends from all over the world and swapping pins with the other athletes.
“I’ve got 250 pins already,” she said. “I’ve got some from Prince George to trade, and I’ll be taking some 2010 Olympic pins.”
Although she lives in Fort St. John, she’s been training the past five years in Prince George with Prince George Figure Skating Club coach Alison Aikins. Aikins said the most notable improvement in Darlene’s skating over last year is the speed at which she covers the ice, and her improved flexibility is adding height to her jumps.
“She’s improved immensely in the last two years,” said Aikins. “Her dances are coming along quite nicely and she’s working on her axel for next year. She never gets dizzy. Out of all my skaters, I can have her spin forever, while most of them get dizzy.”
It’s a five-hour trek from Fort St. John on dry roads and that trip is often treacherous in the winter, but her mother Leona and father Steve know it’s helped their daughter emerge as a national champion. She won two gold medals in the Level 4 category last year at the Special Olympics National Games in Quebec City.
“Alison pushes me hard,” said Darlene, now in her eighth year of skating. “Now I get to go to the world games for the first time and it’s a different thing for me. There have been a few Canadians there (at the World Winter Games) who have won gold in figure skating.”
Darlene was born with Cornelia de Lange syndrome, a rare genetic disorder that results in delayed physical development before and after birth. It can lead to smaller head size, malformation of the arms and hands, and mild to severe mental retardation.
Darlene had very little use of her legs in the first few years of her life and her parents were required to constantly move her limbs, which helped form the connections with her brain that she now uses to walk, run and skate.
“When she was born they said she’d never walk, and then they said she’d never skate, and she does both well,” said Leona.
Skating crossovers on the ice as often as she does has helped rewire some of the connections to Darlene’s brain to enhance her co-ordination. She trains weekly with a physiotherapist and her daily stretching exercises at home and at school have improved Darlene’s quality of life, and people are noticing. At a recent national team training camp she was rated the best-conditioned athlete among the figure skaters.
Jenn Harcourt, Darlene’s coach with the Mile 0 Figure Skating Club in Dawson Creek, thought Darlene was ready to advance to the more difficult Level 5 category last July, after attending a five-day training camp in Toronto. The World Games figure skating events start Feb. 8.
As part of her Special Olympics national team commitment, Darlene has to maintain a log of her exercise time, what she eats and her skating time. She’s also required to compete in at least one other sport and chose gymnastics, which she did until she hurt her foot in November. While she’s more into swimming, dancing and horseback riding, her gymnastics experience helped teach her the value of stretching, and she’s seeing the benefits in skating practice. Her father is giving her $5 for every five Lutzes she lands successfully, and jokingly says he’ll take back $1 for every bad Lutz touchdown. So far, she’s $30 ahead of the game.
“She worked hard for this and it’s her time to shine,” said Steve. “She’s a very hard worker and skating has helped her mentally and physically. She’s been socially accepted in places where she wouldn’t be before.”

Wednesday, January 28, 2009

Special Exposure/Wordless Wednesday

The sudden passing of my father 2 weeks ago prompted us to go through some old photos to mount on a poster board to display at his visitation and funeral service. Today I decided to share an old photo of myself, my sister Andrea and my brother Eric. The year ~ probably about 1982. I would have been 12, my sister 6, and my brother 4. When we were young, our parents would let us decorate for New Year's Eve and do other special things to celebrate. These are some of the best memories I have. Don't you dig the hats?

For more Special Exposure/Wordless Wednesday fun, visit 5 Minutes for Special Needs, 5 Minutes for Mom, and MomDot.

Saturday, January 24, 2009

Catching up....

First of all, I want to thank all of you for your kind words and support we have received since the sudden death of my dad. It really means a lot and the comfort you have all sent through blogging land has been very heart warming and has helped ease the sadness of his unexpected passing. We are getting back on track a little bit at a time and trying to resume everybody's hectic schedule. Baby steps, one day at a time.
I will try to catch you up on some other happenings. Joey's tear duct probe went well. I was astonished that the whole procedure only took about 15 minutes. This of course is not counting getting to the hospital at 5:30a.m. for a 7 a.m. procedure, the 30 minutes Joey spent in recovery, and the hour or so after the procedure that was spent with Joey crying and very agitated before they let us leave. The eye doctor said there is no indication that he has any vision problems at this point, there is no pressure on his eyes, and sees no reason for Joey to need glasses. I'm so glad because I don't know how in the world we would have ever gotten him to keep glasses on. Now for a little negative input ~ it will be two weeks ago on Monday that he had the probe done and we are thinking that the procedure maybe didn't work so well. Joey is still waking up with gunky eyes and they are still watery and mattery although not as bad as before. I am disappointed ~ I thought he might finally be free of this problem. So on Monday I am going to call the eye doc and find out what's up. I would hate to have to put Joey through another procdure again so hopefully this won't be the case.
Between my dad's passing on the 14th and his funeral on the 19th, my second baby Tommie managed to turn 13 years old on the 18th. Happy belated Birthday Tommie! Now we officially have two teenagers in the house! Shawn's side of the family had scheduled a Christmas gathering in December which was postponed due to bad weather and they just happened to reschedule it for January 18th. It was held in Albion also which is where Shawn & I grew up and all of our parents still live. It is only about 45 minutes from where we live now. Shawn took the kids for dinner and gifts. My mother-in-law made Tommie a birthday cake. I unfortunately only got to be there for a little while so I did not get to see him blow out his candles but Shawn took some pictures. He saved his money from Christmas and together with his birthday money he had enough to purchase an IPOD Touch which is something he has wanted for awhile. I took him out to supper Thursday night for a little belated birthday celebration and then off to Walmart we went. He is now broke and John is jealous because he blew his Christmas money on other stuff instead of saving for an IPOD. So he is now trying to save money because he wants one. I have to admit it is a pretty cool little gadget. Now if we can keep it from getting stepped on, spilled on, or sat on it will be a blessing.
Other than that, the kids have had a couple basketball games this week, Joey's resumed his therapy schedule and everybody is back in school. And so go the days of our lives. I am trying to get back on my blogging rounds this weekend. Thanks again for all your thoughts and prayers.

Christmas party...

Tommie blowing out his candles...

Joey liked the big TV...

We filled up our 50 states quarter book!!

Emma and Abbie had a make-up party...

Big brother John lets Joey play on the counter ~ he loves the switches!

Tuesday, January 20, 2009

God Wouldn't Wait....

I am finally heading home tonight after a whirlwind few days. We can hopefully start establishing some sort of "normalcy" again. Thank you all for your thoughts and prayers during this difficult time. We are doing okay ~ taking it one step at a time, day by day. Thank you also for your comforting words and support. You never know what a day will bring so please, try to savor every moment. The following is a poem I would like to share that I wrote for our dad after his unexpected passing.

God Wouldn't Wait

We wanted to keep you longer
But God just wouldn't wait.
Is it supposed to make us stronger?
Will we ever have answers of your fate?
We knew the time would come some day
And no one ever knows when.
We can't waste time wondering
Or thinking of what might have been.
Dad, you were a special man
Unique- as some would say.
We loved your sense of humor
And your funny, quirky ways.
We know that you are healthy now,
Better than before.
God chose to end your suffering
You will be strong forever more.
For now please walk beside us,
Guide us on our way
Until God decides He just can't wait
And we meet again one day.

Rest in Peace, Dad
We Love You

Mom, Rachelle, Andrea & Eric

Wednesday, January 14, 2009

Sad news....

Sadly, my father passed away unexpectedly this morning from a massive heart attack. He had been battling some heart issues for the last few months. My mom found him sitting on the couch this morning unresponsive to her voice or touch. She called 911 but unfortunately it was too late and he could not be revived. Today has been emotionally draining and it feels like nothing is real. Rest in peace, dad. We love you and miss you. Don't worry about mom too much. We will take good care of her.

Psalm 23
The Lord is my shepherd, I shall not want.
He makes me lie down in green pastures,
He leads me beside quiet waters,
He restores my soul.
He guides me in paths of righteousness
for His name's sake.
Even though I walk through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.
You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house of the Lord forever.

Sunday, January 11, 2009

Tear Duct Probe Time....

On Monday Joey is scheduled for his tear duct probe in Omaha. We get to be at Children's Hospital in Omaha bright and early at 5:30a.m......Okay, we probably won't be to bright but it will definately be early. Will let you know how it all goes....

Thursday, January 8, 2009

Here's a peek at how John and Tommie spent their Christmas Break. Productive, right?

Boys will be Boys...

Thursday, January 1, 2009

Christmas Memories & New Year Fun!

Happy New Year to all! 2009 is here and I finally have a chance to fill you in on our Christmas festivities. We had a good holiday ~ busy of course but good. On Christmas Eve, we packed up the kids and everything but the kitchen sink and took off for my in-law's house. For the first time in 15 years we decided to spend the night in Albion on Christmas Eve to save ourselves some traveling time and hopefully have a little less stress. In past years, we have gone to Shawn's parent's house on Christmas Eve, came home and then traveled back to Albion on Christmas Day to my parent's house. Well, we did save ourselves some travel time but our plan did little to diminish the stress level. When we got to Grandma & Grandpa Jerry's house, Joey started showing signs of a cold and/or sinus infection. Runny nose, watery eyes, sneezing, etc. but seemed to feel okay. We dined on delicious prime rib, potatoes and other yummy dishes. The kids received a Wii from Grandma & Grandpa Jerry for Christmas so they got excited about that. They hooked it up right away and I have to admit, it is fun ~ especially the bowling. After presents, I headed to help my mom get some things ready for Christmas Day. We decided to split the family up for the overnight stay, so the girls and I stayed at Grandma & Grandpa Lawson's house and Shawn stayed at Grandma & Grandpa Jerry's house with the 3 boys. This would have worked fine except the girls had a nap so it was after 11p.m. before they went to sleep. John & Tommie stayed up late to play the Wii and Joey started feeling worse as the night wore on. He likes his own bed and couldn't get comfortable in the pack-n-play and plus he wasn't feeling good. In the morning I found out he only slept from about 3am to 7:30am. I guess I got the better end of that deal. About 2am Shawn thought he would just drive him back home but guess where our house key was? With me in my purse. Shawn didn't want to wake anyone by calling to get the key but eventually they got some sleep. After Joey woke up he was playing and getting into everything but had such a terrible runny nose. Santa brought the kid's presents to Grandma & Grandpa Jerry's house and the plan was for me to bring the girls down there for the gift opening. But the girls kept sleeping and sleeping and sleeping ~ it was after 9:30 before they woke up. By then the boys had texted me 1000 times about when we were coming so I finally told Shawn to bring the gifts to my mom's house and they could open them there. About the time Shawn got everything packed up, the boys loaded up and arrived at the house, my sister and her family and my brother and his family got there too. In the meantime, I'm running around like a maniac trying to get things ready for Christmas dinner, the girls don't want to put on their Christmas dresses, all the boys want to do is open presents, and it seems like it is 150 degrees in the house. Ah, I cherish these Christmas memories! ;o) Now I'm not complaining ~ I love Christmas and I was so happy we could all be together, have delicious food in our tummies and share the joy of this blessed holiday. Oh yeah, it also helps that I got a new camera! After months of dropping subtle hints, I did get a camera for Christmas. Thanks Mom! Stay tuned for awesome editions of What Is That Anyway? coming soon to a blog near you. Shawn and I also received a beautiful quilt that only took 16 years to complete. When we got married in 1992, Shawn's Grandma Heany wanted to make us a quilt. I went with her and helped pick out the material with burgundy colors which was one of the colors at our wedding. Anyway, a few years passed and I kind of forgot about it. Once in awhile, Shawn's Grandma would say "One of these days I will get that wedding quilt done for you" or "I need to get to work on that wedding quilt of yours." I knew her intentions were good but years of failing health took their toll on her and sadly she passed away in 2007. Shawn's Grandpa had passed away in 2006 and earlier this summer there was an estate auction. My Aunt Carol and I were looking through some of Donna's belongings ~ material, art and craft supplies, and more material. Well, Aunt Carol knew that Donna had never finished the quilt she started oh so many years ago. She said "Wouldn't it be great if we came across the material you picked out for the wedding quilt Donna started to make you?" And what do you know, a couple containers later we found the material! I couldn't believe it! I hadn't seen it for 16 years, but recognized it immediately. It was all cut in squares and ready to be pieced together. Well, my Aunt Carol is a seamstress too ~ she loves to sew and make quilts. She said "Why don't I take this and see if someday I can get your quilt done?" I think she was as excited to find it as I was.
On Christmas Day, one of the last packages was wrapped in a garbage bag and it was for Shawn and I. Thoughts of the quilt did cross my mind but then I figured there was no way my aunt finished it already. But guess what? When we opened it, here was this beautiful quilt started with love and good intentions 16 years before! I was overwhelmed! Unfortunately, my Aunt Carol wasn't able to join us on Christmas but my mom told us that she had worked and worked on the quilt and even my Aunt Marlene (who is also a quilter and lives in Minnesota) had a hand in helping to get it finished. It is beautiful and I love it! I made Shawn hold it up so I could take a picture of both sides of it which I included in the slide show above. I can't believe it's done after all these years ~ thank you so much Aunt Carol and Aunt Marlene!
The rest of our 2008 passed without much fanfare ~ we survived the traveling, the overnight stay, the cooking, the eating, the packing, the unpacking, the cleaning up, and the winding down. A call to the doctor's office the day after Christmas got Joey on an antibiotic for his sinus infection and he is much better now. We are also surviving Christmas break ~ the kids go back to school on January 6th. After the first day I wasn't so sure if we would make it or not ~ but here we are and I know they are excited to get back to school! ;o) We stayed home with the little ones on New Year's Eve ~ I watched the ball drop on TV at 11:00 so I wouldn't have to try to stay up until midnight. Are you classified as old when you do that? I hope not! John and Tommie spent the night at friend's houses so we had a nice supper of their favorites on New Year's Day and wore our party hats. Nothing beats starting out the New Year with little smokies, our special recipe nacho dip, hot wings, tator tot casserole and garlic bread. Hope 2009 brings joy and blessings to everyone! Happy New Year!

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