This year, as the many that came before it, went by quickly. Too quickly at times. Kevin O'Brien once wrote a wonderful article
that listed the Top 10 Benefits of having a child with WHS. Reason number 4 was that you get to relish in each developmental stage 3 times longer. I often think of that and I totally agree. I feel Magnolia has changed and grown up so much, but the truth is, she has not changed as much as a typical-developing child would. Oh how happy I am that I get to relish in each stage for a bit longer.
Here is a recap of our 2011:
Side note - when you hear the word recap, or at least when I hear that word, I assume recap means brief, quick or short. This recap is none of those things. Not even in the slightest sense of the word. This post gets longer every night I work on it and I am certain I am forgetting many things. Here it goes anyway:
January - I returned to work. I had been home with Magnolia since October. Returning to work was bittersweet. I was sad and extremely nervous to leave Magnolia, but excited and anxious to get back to my students and co-workers.
Magnolia weighed 6lbs 2oz. She started smiling. Of course at the time it was mostly just for her brother, but we occasionally got one or two from her. When we read about Magnolia's diagnosis one of the hardest things for me to hear was the articles that talked about kids with WHS having 'no personality'. I was sad about the 'will not talk, will not walk' but the 'no personality' is the one that hurt my heart. Oh I cannot even put into words the feelings I felt when she started smiling. Her smiles continue to melt my heart. Oh and by the way kids with WHS have the most unbelievable, amazing and vibrant personalities!
|Ringing in 2011|
February - Brian turned 33 and we held our annual Super Bowl party. That party is one of our highlights of the year.
|Brian and our dear friend Jen at the Super Bowl Party|
|Oh how he loves his little girl|
|Oh how he loves his little girl|
March - We took our annual trip to NYC. This year however, we decided against driving and opted for flying. We did not want to take Magnolia, then 5 months old, on that long of a car trip. We had an amazing time, as always. We got to see our dear friends and they got to meet Magnolia. Toller ate his weight in hot dogs and had a blast.
Magnolia weighed 8lbs 5oz. She saw the city from a warm and comfortable baby wrap thanks to my sister-in-law Holly. It was perfect.
|Magnolia at Magnolia Bakery|
|Great friends Brian, Mish and Cami! |
|Toller and Brian in Central Park|
April - We went back to my hometown for Easter. Every year the town has a huge Easter egg hunt and Toller loves it. He loves hunting eggs, but loves hanging out with his cousins, aunt and uncle and his grandparents on the family farm more.
While taking a walk in our neighborhood Toller met some kids around his age. He was, and is, thrilled to have a group of friends that live close.
Magnolia got fitted for a hearing aid for her left ear, it is pink of course.
|Cousins are the best!|
We went to visit dear family in Tulsa. It was so much fun, we love spending time with all of them.
Magnolia weighed 9lbs 5oz.
|Toller's family birthday party - Laser Quest!|
|Toller's 8th birthday|
|Aunt Wendy is the greatest!|
|Uncle Dan ROCKS!|
June - While enjoying our extremely hot summer Magnolia got sick, very sick. We almost lost her. We were hours away from losing her. Remembering that still drops me flat. Magnolia taught us many lessons during that month. Lessons we will not soon forget. 1. Stand up for your children. When you know something is wrong Speak up - Speak up - and Speak UP until someone listens. 2. If the first people are not listening Go Find New People! 3. Do not underestimate what Toller understands. He is affected by more than he lets on. Take time to talk to him about his sister, what he sees, questions he has and how he feels about all of it. 4. Magnolia does nothing by the book. She does not follow the book while she is well and she certainly does not follow it while ill. 5. Cherish each day. Each moment. Always.
Toller played baseball this year for the first time in several years. He loved it. Loved everything about it.
|Toller 8 years old - Magnolia 8 months old|
|Happy Father's Day! Magnolia was released from the hospital.|
|Nice hit T.|
Magnolia weighed 10lbs 2.5oz. She started batting and grasping toys. She still loves Slinkys, crazy beads and tiny light rattles.
|Magnolia loved the warm lake water.|
|Happy 4th of July.|
|Our 2011 theme-Under Construction.|
August - Toller started 2nd grade. I greeted a whole new group of 6th graders. We said goodbye to summer, but not to the heat. Wow, August was hot!
|1st day of 2nd grade|
|First day of school 2011|
|Looking so big in her chair|
|Magnolia found her toes!|
Brian, Scott (my brother-in-law) and Heather (my sister) decided to try something new this summer. It seems like every summer at the lake (this was our 7th summer there) they come up with something new to try. Well this year it was to triple ski/wake board. I drove the boat. Success!
Magnolia weighed 10lbs 14.5oz.
|Relaxing at the lake|
|Fun in the sun|
|Brian, Scott and Heather|
|My dad fishing|
October - Magnolia turned 1! Oh what a party we had. It was perfect. Everything was perfect. We were surrounded by family and friends. So many people came to wish her Happy Birthday, many others sent well wishes. We were humbled by how many people this tiny little one has touched. We are thankful to have such incredible people in our lives.
Magnolia also got mono. The kissing disease....really? No idea how, but like we learned in June she does nothing by the book.
Magnolia weighed 10lbs 15.5oz.
|Birthday girl with my mom getting ready to go into a doctor's appointment.|
|Birthday girl at her party with Isabella.|
|Happy 40th wedding anniversary|
|Painting their 'couples tree' at Paint the Towne|
December - Magnolia had her first and second seizure. We had been waiting, worrying and watching for it for 14 months. It came. And when it decided to come it came with full force. The first one lasted over 30 minutes and the second one was 27 minutes. We were given the opportunity to prove what we had learned in June. We stood our ground. We were our child's advocate. We found doctors that had a history with Magnolia. We did not listen to those that did not know her. We spent some time educating new doctors on Magnolia and WHS. We, again, were shocked by the love and support we have around us.
We celebrated Christmas at the lake this year for the first time. It was amazing. We had a wonderful time and are excited to make this a tradition.
Magnolia weighed 10lbs 13oz. We are hoping to gain back the weight she lost while in the hospital after her seizures. She recently started transferring toys from hand to hand. She still is not using both hands together to manipulate a toy, but it is a start.
|Isabella and Magnolia|
|Magnolia and her amazing Godparents|
|Sweet Baby Girl|