Tuesday, November 29, 2011
Tuesday, October 18, 2011
A fellow i-cell mom shared this article this week from the New York Times (the link is below) about a woman who calls herself a Dragon Mom. She's the mom of a Tay-Sachs baby, another degenerative terminal genetic disorder. This is just a small glimpse of what we feel, what we aspire, and what we enjoy.
Monday, September 26, 2011
Thursday, September 1, 2011
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.
Tuesday, July 19, 2011
Sunday, July 10, 2011
Tuesday, July 5, 2011
Sunday, June 26, 2011
We're only into the 3rd week of summer but the boys are developing a good routine to keep themselves busy throughout the day. When it's time for the babies to get therapy, they go upstairs to play video games or go into my room to watch cartoons (if not they'll stand over the therapist shoulders and be like protective body guards anytime they hear the babies cry) so that the therapist can do their jobs without having to answer to Ben and Alex. :)
Thursday, June 16, 2011
Sunday, June 5, 2011
Thursday, June 2, 2011
I couldn't wait to post this and share with you all... Dori and Wynnie apparently have a new passion -- swimming! Well, more like hanging out in the water with cute German girls. What guy doesn't?
Wednesday, June 1, 2011
Monday, April 18, 2011
“How old are your babies?”
2. God’s grace and love for us is shown in many ways – a hug from a neighbor, a smile on a baby, a good report from a doctor, a new flower blooming in the garden. We have to keep our hearts open to actually see and appreciate these little gifts because it’s the good feelings that comes with those gifts that will be engraved in our hearts forever.
3. Big dreams and little dreams are equally powerful. Before the babies were born we had big dreams for them. Maybe they’d be life-saving doctors, maybe they’d be star athletes, maybe they would be the first twins to be President and Vice President! Who knows?! But we learned that you don’t throw away your dreams for your child just because they were born with extreme special needs. You learn to alter your dreams to suit them, and you celebrate each and every little milestone along the way.
4. Don’t focus on the negatives. You can’t change what has already happened, but you can always change the attitude you use to overcome what has happened. Whether you realize it or not, we are all surrounded by negativity. Negative reports on the news, negative family members, negative co-workers can all form a haze of negativity around you. What you choose to internalize is your choice. Negativity is like food – the more junk food you eat the more it deteriorates your body. Negativity deteriorates the soul, and in our home we choose to keep negativity at the door.
God did not give us more than we can handle. We feel so fortunate that God chose us to be Dorian and Wynn’s mommy and daddy. Those little stinkers will continue teaching us the power of love, patience, faith and family. I only hope they can help change your perspective too. Many hugs and blessings from our family to yours.
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Saturday, April 2, 2011
This was "test" week for the babies. They had their OT, PT and Speech evaluation reviews. They have to do reviews every 6 months to prove to insurance that the babies are progressing enough and needing still therapy enough to justify therapy coverage. Plus, it's important for us as a team (we as parents and the therapists) to reset our goals for what milestones we want them to achieve for the next round of reviews.