Monday, June 28, 2010

A tragic, sometimes almost magic, beautiful week

So this past week Willie, Will, and I packed up the car and headed East. We had a great week. Many days were filled with memories that I will always cherish, and many days were filled with tears as I remembered the little boy that will forever be missing from my life. We made the most of out just about every day out of the last seven.

Last Saturday we met with a family that I think will forever be in our lives. We met online, through a due date club on I knew prenatally that MJ would be born with CDH, their family did not know that their precious son, Eli would be born with CDH, as well. Because of our experiences with our sons, we are forever bonded, and I am so happy to have that connection with them! Eli was a CDH Warrior and came home in just 30 days! Recently he got rid of his feeding tube and is doing wonderfull now. We met for dinner and had it not been for Will and Eli getting overly exhausted, I think we would have stayed there all night! Will was just fascinated with Eli . . .

Eli, however, did not share the same fascination . . .

After our visit and stop in Indianapolis with them, we headed on over to Cortland, NY to visit my sister and boyfriend. We had a great time with them! Tracy is pregnant and due in Decemeber, which is very excited for our family. Because we live so far away, we don't get to see each other very often, so I was so excited that we were able to stay with them from Sunday to Wednesday. We did a lot of stuff with them, including strawberry picking, which Will absolutely LOVED!

Once we left on Wednesday, we decided to swing by New York City for some quick site seeing before heading to Philadelphia. It was well worth it! Neither of us had ever been before, so we were very excited to make a quick stop! We stopped by the Statue of Liberty and Ellis Island and drove past the World Trade Center sight before leaving. We even stopped for some delicious pizza!

After NYC, we finally made it to Philadelphia for the CDH Summit. We got to meet some wonderful, amazing people who are doing some wonderful, amazing things for CDH and CDH Research. There is so much to talk about - I really don't know where to begin!

The Children's Hospital of Philadelphia (CHOP) was there and we learned how they treat CDH babies, pre and post natally. To say this was hard to listen to was an understatement. We spoke with CHOP while I was pregnant and seriously considered going there to deliver Will and MJ. But in the end, we thought we had made the best decision and we stated in Kansas to deliver our boys. Hearing them talk about how they treat CDH babies, what there statistics are, and to see how dedicated these doctors are, well, those what-ifs started to creep into my mind. Don't get me wrong - Children's Mercy Hospital is a wonderful place to be, and they are full of top notch doctors who care, as well. I just don't think that I can't not think about the what-ifs. Especially when I was able to see CDH survivors right there in front of me. One of them was born just after Will and MJ, and he was doing great. Will and him got along quite well, and it was too cute for words. But at the same time, seeing Will interact with another little boy just his age, who survived CDH, really got to me. I suppose it always will, and I am going to have to see him play with other little boys for the rest of his life, so I better start sucking it up. 

Day Two of the Summit was probably the most wonderful part of it all. Willie, my hubbie, delivered an amazing speech called "How to deal with people who just don't get it - Communicating Grief and Needs" He did so amazing - he even surprised me!

My favorite part was how he talked about how people try and throw you a life vest - but you really get an anchor instead. Basically just that people who are not in the Babyloss world will never get it, and too often they say the wrong thing, even if they don't mean to. (If anyone would like a copy of his presentation, please email me at megan@projectsweetpeas, and I can send it to you - it has wonderful tips on how to communicate and deal with people who don't get it)

Then the very best part came - the CDH Researchers presented. I was eagerly anticipating what they had to say the whole time. I always thought that we would never be able to participate in the Research Studies because we lost MJ. But I was wrong! We had an autopsy performed and they save samples for a few years, which means that we CAN participate. I was so excited because it means that MJ's life will help so many others. But that's not even the best part. Their presentation was on genes and how they are trying to find the gene that gives you CDH. Well, I raised my hand and explained that I have identical twin sons, one with CDH, and one without, so how can it be a gene? They said that somewhere, somehow, something happened to one of these genes and that gave MJ CDH. They then asked how I knew that they were identical twins, and I told them that my placenta was tested after birth. After their presentation came over and asked if we were willing to enroll in the CDH study because having identical twins like ours - one with CDH and one without is how they are going to get a breakthrough, because they can compare them to each other and see where and why there is a difference. Currently there are over 400 families in the study, with only eight sets of identical twins. I am so extremely happy to say that we are the ninth family of identical twins! To know that my sons, BOTH of my sons can contribute so greatly to research makes my heart fill with joy. MJ can and will go on to help and possibly save the lives of so many. I am filled with tears of happiness. My little boys are so incredibly special. So we all got our blood taken, Will, too, and he was not too fussy about it! He did great!

So to sum it all up, it was a tragic, yet sometimes almost magic, beautiful week.  Tragic because I so missed my little boy and was constantly reminded of what we are missing. Yet magic because we were able to meet so many amazing people who have made an incredible difference in my life during the past 10 months. Beautiful because I know that this is only the beginning of great things for our family. My family of four is able to contribute to something incredible.


Lori said...

Oh my gosh....I got goosebumps and tears all throughout this post!!!

That study you will be part of is AMAZING and so wonderful for so many families. One of my best friend's little girl is a CDH sweetheart and she regularly goes to CHOP for checkups and visits...

Thank you, thank you, thank you for selflessly allowing your sweet boys to help others!!

Lisette said...

Wow that is wonderful that you got to meet so many new wonderful people and most of all be a part of the study.

I will email you so that I could get a copy of that presentation.
Thank you so much for bringing such awareness.

Megan B ♥ said...

Wow, what a conference. So glad that you were able to attend and enroll in the study to boot!! Sounds like such an emotional event, the ups and the downs, but so worthwhile!

Simply A Farmer's Wife said...

I hope you know how much your family has changed my life.... I love you girl!