Monday, September 26, 2011

Three Cheers for Wynnie!!!

Amid all the business of work, school, sports and life, Wynnie was able to slip in a nomination for his courage and bravery in his fight against ML2. Please read the latest quarterly MPS Society Magazine and flip on over to page 30 to read all about Wynnie.
He is a very cool kiddo and I feel honored that God chose me to be his mami. We love you Wynnie!!

Thursday, September 1, 2011


Ben and Alex in St Louis
Luna Johnson
Dori in his stander
Wynnie in his standard

This summer we as a family have learned a lot about trust. Ben and Alex went with me to St. Louis for the National MPS Society Family Conference. What an eye opening and amazing time we had. Chris stayed home with the babies and had lots of fun here bonding with them. I think when I am out of town Chris is able to let his "hair" down and do things at his own groove, so that's nice that he is able to do it.

At the MPS conference, I had a sit down talk with the boys about Dorian and Wynn and their mortality. The conference had lots of sibling programs on the agenda so I didn't want some of the discussions to make them feel they were sucker punched. So while we ate dinner during our first night there, I told them we although we don't know how long Dorian and Wynn will live that we will do our best to be the best mom, dad and brothers Dorian and Wynn could ever had. We would do everything in our power to give them a happy life, no matter what.

Ben was shocked at this conversation because he just stared at me a lot throughout the course of the event. Alex started to cry and said "But I wanted them to grow to be old men with me!" I told them that miracles do happen, and we should never give up on the miracles God can create in the babies' favor. It was a hard subject to discuss, but for the rest of the conference the boys kept telling me how much they missed the babies and I could see the love they had in their eyes for the other kiddos that looked just like the babies there.

Chris and I have always told them that they can TRUST us for anything and everything. We are telling them that as long as we trust one another, we can get through anything that comes our way. Ever since we got back from the conference, they have been SO much more playful and affectionate with the babies. It warms my heart.

Chris gave in and bought the boys a dog.... we named her Luna (which means "moon" in Spanish). She is a Hungarian Vizsla and she is so cute and spunky. I pretend like it was Chris's idea and that I'm grumpy about it but I secretly love Luna so much! She's so adorable it's hard not to. The babies brace themselves when she comes around because she really likes to lick, jump and nibble a lot so they are learning how to turn their back towards her when she is coming. :)

I enjoyed my trip to St Louis and Silver Dollar City... it reminded me a lot of my childhood because I remember going to the same places with my parents on vacation. I hope the boys will always remember too. Although it would have been nice to have the babies at the conference with us, they would not have liked the 10 hour drive up there so it was best to keep them here.

I trust that those reading this will not have any mortality talks with Ben and Alex. Chris and I are really protective about what they hear and what messages they take away from a conversation -- so we are looking at ways to always be open and approachable for them, while at the same time being their main avenue for questions and concerns they may have.

The summer taught us a lot of lessons about trust:
1) trust is an assumption in its purist form... you only realize how important it is once it's actually lost. We hope that Ben and Alex will grow in trusting us, their feelings and trust in their faith.

2) Prayers are powerful. After our "mortality discussion dinner" in St Louis, Alex prayed that night that God would say "Dorian and Wynn will live to be 100, and that is how it shall be." He said it with such conviction that I have no doubt God heard that one directly himself.

3) Vigilance is so important. Whether it's being vigilant over a puppy around your babies, being vigilant over what Ben and Alex are watching on TV, or being vigilant about the world around you--- when you really love somebody or something, you will protect it with all your heart. If you don't fight to protect something, it means you really didn't care for it to begin with. So focus on what you truly love and put your time and faith into that with all your heart. Anything else is just distractions.

4) Never underestimate the power of fun. Swimming, sleepovers, movie matinees and dance parties all have curative value. REALLY they do!!

5) Waiting brings patience and anticipation. We waited all summer long for the babies to get their standers and they finally arrived yesterday! The babies can use these to put weight on their legs, become familiarized with the sensation of standing and see the world from a whole new angle. Dori loves it!! Wynnie has been sleeping both times he's been in it so we can't tell if he likes it or not. This is the first step to take in encouraging them to walk. Go babies go!!!

6) I really miss my mom and dad. There were so many times this summer where I would have done anything to call them, visit them or just vent with them. I know they hear my prayers but i truly appreciate all they did for me and the strong woman they made me that I am today.

7) I really miss Ben and Alex!! I went to the grocery store the day before school started and I saw some of Ben's favorite polish sausage. I grabbed it to place in my cart thinking it would be a good lunch idea for next week, then my eyes got all watery thinking "they'll be in second grade next week at lunch in the cafeteria, not home with me!" As crazy as they are all day here at home, those stinkers are awesome.