Sophia's First Birthday

To our family and friends:

On this eve of Sophia Grace’s first birthday (yes we do celebrate them!) I can’t help but reflect on how much we’ve lost. Two precious babies that our family desperately longs for, grieves for, and unconditionally loves without regard for the barrier death brings. But we’ve also gained things that we wouldn’t have without those losses. An incredibly tight family bond. An appreciation for life. A depth of patience and understanding with the living legacies (Donovan, Emma, Arianna, & Shawn) we’ve been entrusted with. And the hidden blessing-the desire to help children born with NKH. We’ve experienced first-hand the devastation this disease brings to families living with the effects of this disorder.

For $70,000 per year, a very small sum in research terms, we have the power to free up the only researcher in the world dedicated to helping our children. Please help us help him by attending our first annual Hope for NKH auction, April 2nd, 2011 at 5:30pm. Come join us for dinner (Olive Garden, yummy!) and pick up a few items you won’t want to miss out on!

To purchase tickets:

Online: http://hopefornkh.ticketbud.com/hopefornkh

Mail a check to the address below and we will send you your tickets

Blessings,

Joe, Sarah, Emma, & Shawn

Auction

The date has been set! The first annual Hope for NKH auction is going to be held on April 2nd, 2011. For information or to learn how to donate, please email hopefornkh@comcast.net

Hope for NKH Auction

We have decided to go full steam ahead and put on our first auction for Hope for NKH. We watched as our precious babies came into this world and were so quickly taken from us. So many of these babies and children suffer and we need to help find a cure or a better treatment. I just got into contact with a mother who lost her 10 day old son a week ago. Her world has been shattered due to NKH. Please join us in raising money.

We love you JoJo and SoSo.

Our sweet JoJo's birthday

October 4th has swiftly approached us this year. JoJo would be 6 years old. I can't even imagine how our household would be if we had both of our Angels still with us. We would have a 6 yo, 4 yo, 3 yo, and 6 month old. I would give anything to see that, just for a day. I would love for the kids to be able to meet their big brother JoJo and to be able to hold Sophia and kiss her baby toes. We will be visiting their resting place tomorrow for the tradition of releasing balloons.

3 Months old

Our precious Sophia Grace would be 3 months old today. We should be taking her picture on the elephant just like we did with her big sister. Shawn and Emma have been asking a lot about her and then that also leads into questions about JoJo. They were at the dinner table over at Grammie's and the kids were going around the table talking about their siblings. When it came to Emma she said, "I have one sister in Heaven, one brother in Heaven, and I have Shawnie". It breaks my heart when I hear her talking about it. What kid should have to understand death at such a young age? They want to know all the details of Heaven. Is there cribs, a mommy and a daddy to take care of them, do they eat baby food? So many questions. Today on the way over to our friends house the song Twinkle, Twinkle came on our iPhone. Emma wanted to know if Sophia would hear her if she sang it in the car. I told her that of course she would and her and Shawn continued to sing the song four times just to make sure.

I know that we will never fully understand the why of us having had two precious babies so quickly taken from us. Why was our family chosen? What are we supposed to learn from our experiences? Most of the time I am calm and composed, mostly using avoidance to deal with my grief. I still have days where all I want to do is scream and cry. We are making it through one day at a time.

Auto Pilot

The last 4 weeks have all seemed surreal. Did it all really happen? I think that most of our family has been set to auto pilot the last 4 weeks. So-So came into our lives and ever so quickly left, my grandmother passed away a week later, and my grandfather was diagnosed with lung cancer and had surgery with some complications. People ask, "how do you guys do it"? I couldn't tell you up until this point. It has been a numbing experience, but you just get through it.

These last two days the numbness has worn off. I cry for no reason. Driving down the street, taking a shower, or watching the kids play at The Little Gym. Today we received a letter from our medical insurance provider stating that we needed to enroll Sophia or her coverage would end and I had to sign for a piece of certified mail from the newborn screening office stating that it was a law that she be tested and we had to give our reasons why she wasn't. I know that these people don't know that our Peanut only lived a few short days, but it hurts.

I called Bridges today to enroll Emma in a support group of kids her own age that have also lost a loved one. Classes will be wrapping up shortly and don't start again until July. What to do, what to do.

The kiddos

Each day brings a new challenge when it comes to the questions that the kids (mainly Emma) ask about Sophia and Heaven. She has recently asked how Sophia got up to Heaven, did JoJo come to the window to take her away, and why can't she go to Heaven with her? I have stumbled on the answers that I have given, thinking long afterwards if I have told them the right things. Hopefully it will get easier with time. Emma will be turning 4 in 2 weeks and Mary Bridge has a program for children 4 and up who have lost a loved one. We are considering having her attend because she has so many questions and even started wetting her pants a couple of times in the weeks after Sophia passed away. Only time will tell.....