February 11, 2015

Wednesday, February 11, 2015

Picture taken July 19. Blurry but it was the biggest smile she has ever given.

Each day is hard in its own way. One day because the ache is too much to bear. One day because the memories are too overpowering. Another because there ar...e sweet reminders everywhere. Today was hard because her urn (empty) arrived in the mail. Yeah, it was as hard to open as you can imagine it would be.

But along with these beyond-your-imagination-difficult-days are messages, cards and letters we are receiving with stories about how Everly has impacted someone's life. Wow! Those are so powerful and so special to us. I can honestly tell you that they will be treasured and placed in her memory book...well, books really. Thank you for taking the time to send those to us. Just thank you.

I received a message yesterday from a friend that was so just honest that I have to post it. I love her dearly and am so grateful for her candid message to me.

Just want you to know how broken and heavy my heart is for you and your boys. Who can understand? Please know when you feel alone that for every person who has reached out to you, there are 20 cowards like me who don't know how. Who don't want to say the wrong thing, so we say nothing...not a thing...too scared to like a post and admit that we don't understand and in a weird way feel ashamed. I wish I knew what to say or how to say it but then I guess that means I could make it better...which I can't. So just know I am here...sad for you...crying for your beautiful little girl but so proud of how you all love and honor her.
Be still and feel...that's what I did today to honor you all.

Please know that I, like so many of you, had no idea what to do in a situation like this before our journey with Trisomy 18 began. I didn't know what to say to someone who lost their grandmother, let alone their child. I haven't started to get out into the "outside" world (don't think the woods count) yet but when I do, I pray that it is a soft reentry.

There are lots of wonderfully written articles about what to do and say when someone loses a child.

But, you want to know, a secret? All those of us in this awful club want?

**We just want to know you care...
...reach out in any form, ANY is better than none. Please know the pressure is completely off of you because there is nothing you can say or do that will be what we really want which is our child back. But a simple "I'm sorry" or "I'm thinking about your family today" or nothing at all but to come and be an ear or a shoulder to cry on goes a long way.

**Remember our child's name...
....use it, say it, speak it. It's so important that we know our child's name belongs still. That he or she mattered.

**Be gentle...
...grief begins when you receive the Trisomy 18 diagnosis...for us we had to grieve twice with this: once at 23 weeks when we were initially told but then 3 weeks later was retracted, then again 5 days after birth. You grieve the loss of the baby you would have, the fear of someday, sooner rather than later, losing your baby. Then when your baby passes, you grieve again. But in a whole new way. We are hurt, our reserves are gone and our heart is broken beyond repair. Be gentle because we are living your worst nightmare.

Thank you to all of our friends and family who have reached out to us since our Sweet Pea left our arms! It truly does help and it does mean so much to us. Please don't worry if it's the right thing to say, or that we haven't seen each other in years, or that you can't imagine what we feel. It's okay. One hug, one kind word will cross all bridges.

With love and appreciation,


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