Friday, May 24, 2013


I'm going to take the weekend off from the blog.

Tonight and tomorrow we have Ed's cousin, Glenn, visiting from New York and the house is already a bit more cheerful.  Brian is laughing more, if you can imagine that, and Ed is looking forward to a fun night out with his good friend.

In other news, I am grateful for the connections I made through Gavin.  Thanks to an incredible nurse practitioner, Meganne, who works with Dr. Bonnemann at the NIH (you can read more about that our experience with them here!)... I was able to get hooked up with an excellent genetic counselor for Project Hope.  I will be getting a non-invasive blood test at ten weeks to test for any chromosomal defects through the University of Pennsylvania.  This is much more desirable to me than a CVS or Amnio... although, if there is a problem that shows up with the blood test I will move on to get one of the other tests.  

Why do I get genetic testing done?  Well, for multiple reasons.  One, my age pre-disposes me to chromosomal abnormalities.  And two, because of Gavin's undiagnosed genetic syndrome - I have always preferred to be tested.  Ed and I want to be prepared to handle whatever comes our way.  After the shock of Gavin's silent delivery room, we would rather go in with facts and a plan.  It won't change anything... but it will emotionally, mentally and perhaps financially help us plan.

This weekend I am hoping to chip away more of the mountain of thank you notes that are overwhelming my dining room.  I know many of you are thinking - or writing to me - that I shouldn't worry about thank you notes.  People will understand, you tell me.  But I want you to know this...

Every single thing that has been done for us... in honor of Gavin... and for Brian... it all means so much to me.  To think of anyone taking the time out of their lives to comfort us - feed us - pray for us - it brings tears to my eyes.  It may take me a year (let's hope not) - and I hope and pray I don't forget anyone (if I do, let me know!) - but they will get done.  It is important to me.

I also want to say thank you, again, for the contributions many of you have made in honor of Gavin.  Whether it was to CaringBridge... Nemours Child Life Department... Gavin's Trust Project... or the Gift of Life Family House. Whether it was a dollar - or five hundred - or five thousand.  We are so, incredibly grateful.  We were most recently blown away by my husband's co-workers and friends from his former company, Accenture.  They pledged $25,000 to the Gift of Life Family House in order to have one of their guest rooms permanently dedicated to Gavin.  Ed, Brian and I will be headed down there in early June to choose a guest room and a plaque for the door.  This is such an honor and it really rendered us speechless.

So many wonderful things have come out of this tragedy... showing all of us that there is beauty and lessons in even the worst experiences of our lives.  You just have to pay attention - they are there.

Enjoy your holiday weekend.  And if you haven't done your "random act of kindness" for my birthday project, perhaps you can thank a soldier this weekend.  I would love that.


  1. Kate, I just have to say again, your strength and perseverance through this whole horrible ordeal is so inspiring, it reminds me that there are still positive things that can come out of negative situations and to receive all those wonderful donations is amazing. I myself donated too, because I wanted to honor your superhero of a son, Gavin and all the amazing things he has inspired so many people to do. My prayers are with your entire family. You, Ed, and Brian are always in my prayers and hopefully over time the pain you feel will subside. I will continue to be honoring Gavin in any way I can. Sending lots of love and prayers from New Jersey!!!!

  2. May this weekend be one of refreshment. May all of you be able to smile and laugh a bit.

  3. What a wonderful way to honor your son. I cannot begin to understand what you have and are going through. Please know that I'm praying for you and your family. I'm glad your husband is beginning to laugh again. Enjoy your weekend!

  4. It seems that your strong desire for Gavin's precious organs to be used, and the subsequent disappointment with the liver, attracted more of an impact on organ donation than otherwise would have been the case. People are doing what they can to keep that decision from being in vain, and so now instead of one person receiving a world of difference, many will. That's your advocacy, and our loving God. Sometimes when disappointments happen, we just wait in the darkness and hope that somehow our pain will have value. Other times, we are blessed to have hints of the greater story. Thank you so much for sharing your story with us.

  5. Bisous (kisses) as they would say in French. Have a peaceful, cheerful weekend.

  6. Thank You again Kate for your honesty and encouragement.I found your blog through Glennon as I was going through losing my Mother (quite suddenly) from ovarian cancer that had hidden itself from us.Your bravery and strength brought me encouragement and challenged me through one of the most difficult losses of my life thus far,my precious mom. When I wanted to lay down and not get up again, your blog would come to my mind and heart.I thought "Damn it Lori. if Kate can get up and walk bravely through the only loss that is way worse than losing a beloved parent.. then you can too!" Please know I prayed and cheered Gavin and your family on from the moment I started reading, which was right after Gavin was flown to the hospital. Since then I have read your blog religiously,looked at the videos and fallen in love with Gavin and your whole family(including miss sarah)I audibly cheered when you announced Project Hope and will be praying for your precious baby and your entire family.I was moved tonight by your words of all the beautiful things that happened as you have struggled to step one foot in front of the other and mourn the loss you have suffered so publicly.I am encouraged to look and see the things that have happened as a result of my moms passing, and there have been some great things-I just need to keep my eyes open for them.Thank you again Kate.You are a brave ,beautiful person.Its no wonder Gavin was such an incredible little guy.I take comfort in the hope that since they passed so close together, my mom (who taught school for 50 years...including kindergarten and would have adored Gavin in the classroom.)has gotten to meet and fall in love with Gavin, to run and play with him as she did here on earth for her only grandson, my son Jacob! Trust me there is no one better to have in Gavins corner than that protective wonderful grandma! Much love to you and prayers for a safe and happy trip to the magic kingdom.Lori


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