OK, this is a long one. You might want to grab a cup of coffee and settle in for a while...
Kelvin and I were talking last night about what a whirlwind of a year 2008 has been. I seriously can't believe it's already over, because it totally seems like we just began... In January, Marvin, Kelvin's dad and my precious father-in-law, went to MD Anderson Cancer Center to begin his second transplant to treat and hopefully put into remission his Multiple Myeloma. He would remain hospitalized because of a lung infection. He would flip flop back and forth, from a little better to a little worse. We spent many hours visiting him at the hospital and got very familiar with the MD Anderson campus and doctors. January would also begin the journey to find out why our youngest daughter, Emma quit progressing like she should and only had two words to her vocabulary. We started with a hearing test which confirmed she had fluid on her middle ear and needed tubes. Unfortunately for her that was not the cure all.
In February, Luke turned 4 years old. We had some friends and family over for dinner and a space monkey birthday party. The kids had a "blast"!!
March was Emma's 2nd birthday and the month of beginning therapy for her. Her party was fun as well. She loved her cake...
In March we had a great time at the beach house with our small group friends from church. We had an egg hunt for the kids, and the adults enjoyed smashing confetti eggs on each other's heads!
The end of March brought a rather cool Easter. The kids had a quick egg hunt in the front yard.
Unfortunately, April brought with it much sadness for our family. Marvin lost his battle with the lung infection and Multiple Myeloma and found his place at the feet of Jesus on April 3. It's still hard to believe Marvin is not with us. He was such an inspiration to so many and lived life to the fullest. We love and miss you Marvin, Dad, Pawtaw, friend, brother, husband...
Our family and friends stepped up to the plate and carried us through this trial. We are truly blessed.
April was also the month Emma saw the neurologists at Texas Children's Hospital for the first time. They began testing for what they thought was a chromosomal disorder or something under the Autism umbrella. Tests would later confirm otherwise.
To try and combat the high cost of gas, we bought the "egg," aka Toyota Prius in April. As soon as the kids saw the car they thought it looked like an egg, so the car had a nickname right off the bat.
In May we had plans to go to North Carolina with our very good friends from Colorado and their kiddos . We decided to make it a road trip and drove the Prius halfway across the country! What a ride! We made it though and had a wonderful week with our friends. Bald Head Island is beautiful, and the beachfront home we stayed in was perfect for our families!
June was spent mainly at the beach house. We had such a good time there. We named it "The Getaway" and it truly was. The kids always had a blast playing on the beach, and we loved spending time under the house letting them ride their bikes or just sitting in the porch swing. We ate a ton of good food and had a bunch of friends and family join us during the summer. It was such a treat!
June was also Carleigh's birthday. We had a fun time at the local spray park with her friends...
Emma inspired Kelvin to go back to school. He started back in July and has enjoyed being a student again. July brought more beach house trips. It also brought the biggest punch in the gut we've ever had. Emma's neurologist called July 23 to let us know that the genetic test results were in and confirmed Emma has Infantile Neuronal Ceroid Lipofuscinosis, or Batten Disease. Her disease is characterized by rapidly progressing symptoms, and unfortunately we have found this true in her case as well. We have learned to accept love from others in a way we never have before. God is good, even when situations aren't so good.
July also brought one of the biggest surprises of our lives. We found out we were pregnant with our 4th child! After a couple of months of tears and denial, we finally started wrapping our minds and hearts around the fact the God has a plan that is different than ours. Despite any efforts we may have taken to prevent another baby, God decided we needed another child. Of course there was a certain amount of fear tangled with the tears and denial because we knew that another baby would have a 25% chance of having Batten Disease just like Emma. God spared this new little one as the amnio results showed everything is perfectly normal! Baby Cora is due April 5.
In August, we were given a very special gift from some anonymous friends. Our friend and pastor called Kelvin one day and told us our family needed to book our all expense paid trip to Disney World! So, we did and had the time of our lives. Our plan had been to wait a couple of more years before our family went so that Emma would be a little older and the other two would still be young enough to enjoy the magic of Disney. After her diagnosis, we realized this past summer might be the last time Emma could enjoy a trip to Disney World. Kelvin briefly shared these thoughts with our friend in passing and that was all she wrote! AMAZING!!
August was the start of 1st grade at public school for Carleigh. Though homeschooling her had been our plan, I didn't feel I could devote the time and attention Carleigh would require as I was taking Emma to therapy twice and week and meeting her daily demands. Carleigh loves riding the bus more than anything. I couldn't pass up the big yellow limousine service that stops at my front curb!! Her teacher is a doll, and she loves her school.
Luke and Emma are still at Wee School. Luke has learned so much this year. I am constantly amazed at what they can do at such an early age. Emma has wonderful teachers who love her dearly. We are blessed with so many people who love and care for her. She has made a big impact on the lives of many we will never know.
September was the month of storms. We dodged one in August while we were at Disney World too. It was tough, but we stayed an extra day so we wouldn't get stuck at the airport to wait out Tropical Storm Faye, I think it was. We had a good time walking around in the rain at Downtown Disney and caught a 3D movie while we were there! Anyway, we made it through Gustav, and Eduard, but Ike had other plans for our little beach house.
(not the greatest picture, but you get the idea)
We boarded up and secured everything to prepare for the category 2 storm it was, but when we returned to view the damages a few weeks later, this is what we found...
We found our roof totally in tact on our backyard neighbor's slab! Most of our house was washed away in the 20 foot storm surge, but we found some of our belongings like Luke's rubber elephant and Carleigh's My Little Pony, a few knives and plates, a platter or two, and a few hundred yards away, the fire pit Kelvin's uncle had made for us just a couple of weeks before the hurricane hit! We couldn't believe the complete devastation to our little beach community. It will be many months or even years before the area is ready to rebuild.
We spent the night of the hurricane in Beaumont with Kelvin's family. What were we thinking? I'll never stay nearby a storm again. It was very scary. I thought at any minute the roof was going to blow off and the windows were going to crash in! The day after the storm Kelvin headed back home and my mother-in-law, Connie and I headed north to stay until one of us had power restored. Because of Emma's seizure medication, she cannot get overheated. Her body does not cool itself, so staying home with no A/C in the Gulf Coast September heat was not an option for her. It was a fun mini vacation. Connie was so helpful. After a week in a hotel, Connie's power was restored, so we headed to her house for several days. Two weeks away from home was hard. We had good company though.
October was pretty normal, if there is such a thing. We enjoyed all things fall. We even had some fall weather to go with it. The pumpkin patch is always a favorite...
Carleigh, Kelvin and I got to enjoy our niece's Debutante Ball. It was fun, especially for Carleigh, to get all dolled up and spend the evening eating and dancing. The girls looked beautiful in their gowns, and Carleigh was a little princess.
November ramped us up for the holidays. We enjoyed good food, family and fellowship at Thanksgiving. Here's a pic of my side of the fam...
Kelvin enjoyed spending time with his uncles on a new hill country deer lease. He got a good 8 point buck this season!
December was full of fun. I had a birthday. Kelvin and I got to spend a night away by ourselves to celebrate...the best birthday ever! We enjoyed a wonderful dinner at an excellent restaurant, enjoyed a little shopping and spent the night at a great hotel. A long, uninterrupted soak in the tub was greatly appreciated! We also celebrated my sweet mother-in-law's birthday, decorated the house, looked at pretty Christmas lights and went caroling, had a good time at some Christmas parties, went to a couple of Christmas concerts, enjoyed Luke's school Christmas program, had a blast at a friend's church's outdoor Christmas Festival complete with snow hills and all, visited with Santa, and watched Carleigh and Luke perform in the children's choir program at church.
The biggest surprise in December was the first ever (that I know of) partial snow day for school. It snowed around 3 or 4 inches, and the kids enjoyed building snow men, making snow angels, pelting me with snowballs, and hot chocolate afterward.
They weren't terribly thrilled about their feet burning from the cold though. (click on the highlighted words to take you to the entry with the video.)
We are also excited about our new non-profit organization, Emma's Hugs. We have already received some donations, have meetings scheduled with Texas Children's Hospital in January, have plans in the making to help with different programs at MD Anderson, are excited about the benefit scheduled for March 21, and are awaiting news from the IRS as to when our application is approved.
A special thank you to all of you, our family and friends, old and new, who have prayed and lifted up our family this year. It has been a tough one, but by the grace of God, we are still standing. "For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope." Jeremiah 29:11 (New King James Version) We love you all and hope you have a very blessed 2009. Keep stopping by the blog to keep up with the happenings around our place.