This loss.. its not just mine. I have made a conscious choice more recently to not often share their stories of wanting for her.. Because I know. I know its their story to tell.. But also when our 4 living babies are old enough to choose to read (or not read) their mothers words.. I want them to know I was aware of their pain. I was aware and loved them through it the best I knew how.. And their Dad too..

We all hurt for her.. We all miss her in our own ways.. Watching a show where one of the main characters lost a child years ago. He talks about almost dying.. and the love and warmth he felt.. and the power of which he grieves his daughter.. .Sitting next to my husband feeling his want for his daughter coming off of him. His ache. His pain. Palpable to me in that moment.. but distant too.. Because it is his. His alone and by now I know I can only bear witness..

My Jonathan.. his big sister is ever present in his mind.. At least right now.. So many of his school assignments he will bring her up. 100 days of school a question asked what he would want 100 of..

His answer.. 100 time machines. To go see Jennifer again.

you are his first best friend.

thank you for always taking care of him

It’s a balance right. To acknowledge what he is saying.. but not overly so.. To let him know I see his missing.. I see the loss he also experiences.. But not encourage his hurting.. Not make it bigger for him than it just is.

With Tony there isn’t the pressure to support him the right way.. But with the kids..there is a lot ..

I wasn’t prepared for that. I’m not prepared for it.

I hope I do ok. I don’t even know if I can hope that I do well. But I hope I do ok shepherding them all through their different and ever-changing levels of grief.

My Bridgey. She lost her first tooth.. Such a big milestone.. And so truly bittersweet. I am beyond words grateful to get to watch her grow.. But I am hyper aware how soon she will outlive her biggest sister (and yes saying that aloud is terrifying .. feels like tempting fate.. so maybe I should say I hope with every ounce of my being that i get to watch her outlive her biggest sister)

Tony pointed out the other day how she likes to hang up pictures of herself all over the house. .. I laughed at what a goof she is.. But he said he thinks its because we have pictures of Jennifer all over. So its a way for them to be connected. .. I never even thought of that. And we both know.. we have no freaking clue if he is right or not.. If we should be acknowledging that .. or if by giving those thoughts a voice.. if they would be introducing a new thought to her little head..

And I noticed how she trys to wear a sissy shirt everyday .. how when I remind her that she is our dandelion wish come true.. And that I thank God for giving her to us.. She reminds me that it was Jennifer and God that picked her just for us. .

thank you for the gift of her..

Charlotte desperately wants people to know her big sister. Knowing Jennifer means you know her somehow. It means she matters. I think maybe it gives her some sense of control over the senselessness over her sister dying. And nothing makes her happier than pictures of her with her big sister. ..

She wants to be active in the fight too.. never just on the sidelines.. Even when she was younger she would want to tell people about her big sister.. For her its all beauty. .. she refuses to let the painfulness of her sister being gone take away the beauty in their relationship.. and she just simply wants everyone to know her sissy

i wanted to give you the gift of a baby sister..

but you are the gift to her.

Nicholas is the bystander right now.. The one bearing witness to all his siblings are doing and going through. He will listen to his brother talk about their sister.. he will help Charlotte from the sidelines on her fundraising and awareness efforts.. And he will snuggle in as we watch a video of Jennifer or when I share stories.. But he is quiet about it all.. Im not sure what he is thinking or feeling about it all right now. And that’s hard..

But I also know thats part of his journey.. Because it’s his. ..

I want to share this.. For other families living this journey with us.. For people that love and care for families like ours.. And for all of us to look back on and to remember.. It wasn’t always pretty but we did our best and loved and supported each other the best we were able on each of our individual journeys… Together.

We love you

3 simple words

his first daughter

their first sister

we love you

3 simple words

…until there is a cure..