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Perspective. We are waiting for jlks surgery to put her port in. It’s been bumped twice. Now behind 3 hours and counting. I was feeling sorry for myself… Mad that a day with our girl is being spent with her hungry/thirsty and scared watching movies at the hospital. Then I found out they are working on an ICU patient. Perspective. Thankful I GET to spend time with my gal watching movies. Thankful for our today. Along the same lines, my amazing husband reminded me yesterday by reaching out to friends to see how they are doing… This isn’t just our journey and our pain. We know so many others are hurting with us and riding this ride. Thank you.


We just received a check from the PayPal account from a list of all kinds of people. It was actually kind of fun to read it together and talk about how we know them. We will be using this gift for lodging and food while JLK gets her treatments. It removes a huge burden for us. I also want to share how very difficult this portion of the journey is for Tony. He is struggling to be able to accept these extreme acts of generosity. My husband is an amazing provider both monetarily and emotionally…I think he struggles with not being able to do it all. So I appreciate this even more if it can lessen the burden on his already heavy shoulders. Thank you.

Is this real?

Sometimes this all feels like a dream, like this isn’t really our life and this isn’t really happening. She seems fine and healthy…Our daughter can’t be sick…I can’t actually lose her…can I? Then I see a group of teenagers and it hits me that I won’t ever know her like that. She won’t go to prom or graduate high school. A little girl born to be a mommy won’t ever get that chance…This doesn’t mean I have lost hope, but it does mean that I need to be realistic about what’s happening here. Tony tended towards being more overprotective than me of her physically when she was little. I clearly remember telling him our job wasn’t to keep her from getting hurt it was to keep her alive. So if she fell off the play structure and broke her arm that was ok….For some reason I thought of that again[…]

One last thought

One last thought before bed that I have to share. I don’t know if I adequately described the depth of our gratitude. I am sitting here crying tears I didn’t know existed in a time of such despair. Tears of my heart being filled up… It’s coming from all sides… from all angles and I can’t help but feel blessed. Truly thank you. And please oh please stick with us.

Beach House

We are constantly overwhelmed with the outpouring of love and support both tangible and not. I am raw. Like an open wound constantly exposed to the elements. I don’t know how to express our gratitude since we are also staying so insulated with our family of 6. But please know we aren’t taking one single thing for granted. We are raising our children to know the importance of the handwritten thank you note, but I could write till my hands cramped and not thank every one. So please accept my sincere thank you’s through this writing. We were offered time at one of brothers good friends beach house. I jumped on it. The other day I was crying about how many things I have waited for till later…specifically going to the beach since jlk loves it. I thought it was just too much and too hard. I regret that very[…]


6 years ago this was her due date. I thought that wait for her to be born into my arms would be the hardest time of our lives… I got to take the boys on Jonathan’s school field trip. We had a great time and I am glad I got to take them and spend some time with my fellas. Tony and Jennifer had a dance party and went to his work. JLK was given a huge basket which she was so excited about and lovingly shared the contents with her brothers. They also went to “spider park” and shared a picnic together. I had forgotten that our contractor’s son attends the same preschool as Jonathan.. on a different days though…When I saw her I couldn’t help it I just started crying…Ok let me back this story up. We finally bit the bullet a few weeks ago and picked a[…]

Another Birthday Celebration

We were lucky enough to have a dr free day today. We took advantage doing the simple things. Most importantly Daddy getting some one on one time with our girl and me getting time to go down a slide with her. She looked back and said thank you for going with me mommy. She is such a amazing big sister….but I know it’s hard to have me so preoccupied so often in her short life. But she has never once complained, just appreciates her moments. Oh how I love her. She told Daddy she wanted to go to YoughArt where her party was supposed to be. We were in the hospital that morning so we had to cancel. So we texted a few friends to join us. She was totally surprised and had a great time. I enjoyed just watching her use her body and smile and laugh. I filmed[…]