Owen said, as he snuggled down in our sheets trying not to hear the thunder that was crashing outside our window. It was 10:30 pm and all the other kiddos were dreaming away in their beds. I had been reading a blog of a young family who just had their 3rd baby, a little girl named Nora Rose. She, too has Trisomy 18. Our friend, John had sent me the link and as I looked at the photos of this 2 week old beautiful baby, I could see Lulu’s face. I don’t know this family, but as I look at her mama in the photos, I cry tears of joy for her baby girl she is holding and I cry tears of grief for my baby girl that I wish I could hold for just a little longer. And then I look at Owen, tears running down his cheeks, missing his sister still and that’s when he said, “I miss her all the time”.
It’s a journey that never ends.
It changes.
The paths are different now. They pull from us in a way that we are still not familiar with, we are not used to. They make us think more – work more – carry more.
And then someone says, “I miss her”
“I think about her so often”
“When I see bubbles, I think of Lulu”
“I will be forever grateful to have held your baby”
To know that our daughter is loved so much. That she is still a part of so many lives. I can barely whisper, thank you.
Thank you, for sharing your thoughts of her.
Thank you for letting us still cry.
Thank you for asking us how we are and letting us honestly answer.
Lulu's Grace 
~ You all continue to be in my daily prayers, Cami!
When Simon stayed over the other night, he came into my room crying, sobbing really, choking out “I miss Lulu!” Of course, I gathered him into my arms under the warm covers and could only say, “Me, too, Darling.” I kissed his sweet wet face and asked how he thought of her, but he was on his way back to dreamland.
Then 2 nights ago I dreamed of Lulu! I captured the dream in my journal I keep about her. I will share it soon.
Perhaps Miss Lulu is tapping us all on the shoulder saying, “Hey you Sillies, I love you; can hardly wait to see you again; I’m very happy here; don’t forget me!” and off she flies to the next flower or rainbow or however she spends her hours.
Interesting how a sharp and vicious pain can end up being be such a sweet and sacred bond in our family and with our friends. All in all, God is so marvelously good, isn’t He?!
For me, the only thing more agonizing than the grieving of my own heart is watching my daughters heart break….and not being able to take that grief from her. Should I want to? Probably not, as my head tells me that this will just prepare her for adulthood, make her stronger, build character and perserverance, teach her empathy for others….but my heart pleads with my Lord to just please protect her from such agony…. when I, as her momma, cannot. I love you Cami. So much. I love your heart and I love how much you love your precious children and your husband….and Jesus.
Cami,
I too can understand the pain of seeing your children hurt. It is heartbreaking to watch them struggle thru grief and not be able to fix it.
I have also been following the blog of precious little Nora and each time I visit her blog, I think about you. I wish I would have had the privilege of meeting your sweet Lulu, one day when we are in Heaven, you can introduce me to her. Ok? 🙂 Love you Girly and I will be in touch soon to plan a time to get together.
Oh Cami..my mind..heart..body ..and..spirit has been In a whirlwind of emotions lately and reading this regrabs my heart for you and your family..I am sure you know by now that our once gop presidential candidate Rick Santorum has a 3 year old daughter with trisomy 18..they have almost lost her several times..I think of you EVERYTIME I see his face..just think if HE could have been our president…anyway..my prayers for you have been”rebooted” today!!