One Week

so it has been one week, it feels like a lifetime, it has been painfully slow in the moment, but also incredibly fast.  We thought we would be relieved (sick I know) because the last year and a half was so brutal we watched our son deteriorate before our eyes slowly, we watched him be tortured, we consented to poison after poison, we watched him in pain we did not think was possible, pain that no one could control, even with the strongest pain meds available for the last month of his life, we thought there would be some sort of relief that he was no longer suffering, we were wrong.  Instead there is just emptiness, a hole I can not even begin to describe, a heartache and longing to see him, touch him, hug him, kiss him just one more time.  We devoted every ounce of our beings to caring for Connor, we gave up everything, we had a purpose so much bigger than ourselves and in a moment it has just been taken away, the medical devices have been picked up, his medicine is being donated and he is just like that, gone, we feel empty, like we have lost our purpose with our best friend.  People talk about signs, most of what people think are signs I think is a bunch of garbage and it does not make me feel better, but we have received two real signs this week.  The first is in Claire we have completely shifted our focus 100 percent to her, doing things she loves to do, doing things she wasn’t really able to do while Con was sick, it is liberating in a way to just decide to do something, and 5 minutes later be doing it, this type of life is so foreign to us (that being said if anyone has any rainy day activity ideas for her let us know, the next three days are supposed to be a washout and sitting inside all day is the worst possible thing we could do, we did that last Saturday and it was torture, we were supposed to stay at the shore but have decided to return home due to the weather), but in focusing on her we have noticed some stark changes in her, it is as if, Connor’s soul never left, instead of finding a new home in a baby (we have been reading up a lot on this stuff and how there are only an infinite number of souls), Claire’s just moved over and made room for his, not losing any of what we love about her, but adding a whole lot of him.  All the sudden Claire loves to cuddle (our favorite Connor trait), she dances when she hears music, and she poops everyday right as we are trying to leave the house (for those that know Claire she is lucky if she poops once a week, preemie problem, she has never pooped regularly, since Connor passed she has and it is always right as we are trying to leave, something Con is known for).  There is so much more, but we will stick with that for now.  The second sign, someone I went to high school with, someone I considered a friend, but lost touch with, went through this 2 years ago, lost her three year old boy to brain cancer, was even treated by Dr. Gardner, traveled back and forth to the city, leaving her daughter in the care of her mother, and complained about 9 east, no one put this together, no one. She sent me a message on Saturday, I by chance found it in my spam, at a particularly tough moment on Tuesday.  I got her email address yesterday and we have corresponded, I have read her entire caring bridge, some of it is eerily similar, especially our feelings on certain personalities who were involved.  The reason this is a real sign is I believe Con is up there in heaven playing with her little boy, finding her, alive and living two years later was huge for me it showed me we can survive this, I am not trying to say her life is sunshine and roses, I am not sure either of ours ever will be, but she is living life.  I hope to get together with her soon.  For now I will leave you with pictures of our Claire Bear who reminds us life is precious and worth living.

Swimming with all her clothes on  


And for those that missed Con’s celebration of life or aren’t on fb, here is his video, with music and his sweet sweet belly laugh!

And the amazing flowers Grammy and poppy got sent to the church that Casey and I dropped off with Con:


Lastly, the beautiful butterfly release we did courtesy of my sister’s babysitter between Con’s burial and his celebration of life:



5 thoughts on “One Week

  1. Some indoor activities that my kids enjoy are visiting Imagine That, Pump It Up, My Gym or you could go to the YMCA for swimming maybe? The mall is usually an easy distraction and the library too. Our library (in Springfield) has computers for the kids and a puppet show area for them to use plus couches and a table for drawing, etc. You could stop there and then to Natale’s bakery for some yummy Sese cupcakes 🙂 I would be thrilled to meet up with you with Emily if you think Claire’s up for new friends.

  2. Imagine That, Northlandz, bounce U, the library has a lot of kids activities, and we would be happy to have a play date. best, Lisa

  3. Erin…………I have not lived in NJ in I don’t even want to say how many years…………but we use to take our girls ice skating in the middle of the summer and they loved it. Maybe a movie or bowling? Duckpin is with the little balls. These could be ancient ideas, but worth checking into! Hugs…….love you all! Bon

  4. Please do not feel it is sick or bad when you do have feelings of relief or joy for being able to do things you previously couldn’t have. There isn’t a breath in your body that wouldn’t have done anything to cure or keep Connor here. The last year and the last few months have been beyond brutal on all four of you & certainly on his small body. As you get your sea legs on these uncharted waters it may be good to talk to someone about these mixed feelings because it is so complicated, but it is not sick that you did not want Connor to suffer more and it is not sick that you are having fun with Claire. For now I imagine the emptiness and void is almost too much to stand. For that I am so sorry. Those are without a doubt two signs that hopefully can keep bringing you some comfort and smiles. Claire’s smile and spirit are a clear reminder of the good stuff worth living each day for. xo

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