Why Not My Cherub?.... A Letter To Grieving Parents

I wrote this last year for other grieving parents.  Sometimes I still need it myself.


Dear Grieving Parent,

It is not because you were not worthy of your cherub - you were and are. You are so worthy that you have been entrusted to carry on your life's goals and theirs as well. You are so worthy that your cherub chose you to be his or her mommy and daddy during their short time here. You are so worthy that you were blessed enough to be the parent of a living angel... a child placed on earth to touch the hearts and lives of so many people. So much love and so many lessons put into such a short time. Not everyone can comprehend that great blessing and that great responsibility - but you were chosen.

It is not because of your faith or doubts. It is not because you didn't pray hard enough or because not enough people prayed for your cherub. There are cherubs who have had 1000's of people around the world praying for them... and they did not survive. We have had cherubs whose parents do not believe in religion and they have survived. Your prayers for a miracle were not refused. You have received miracles too... even though they may not be the one you wanted most. Prayers can sustain us through whatever CDH throws as us, helping us to make the right decisions, bringing us peace no matter the outcome.... and they can lift us up and carry us through grief.

It is not because you made a bad medical decision or did not fight hard enough for your child. Your cherub had a whole medical team fighting for them along side of you. You made all the best decisions that you could for your cherub. You were and are the best parent to your cherub that you can be. There are 1000's of healthy children who do not have parents who would fight for them.... your cherub was blessed to have you as parents just as you are to have had the opportunity to be a parent to your cherub. If CDH has taught us anything it is that it plays by no rules. Children with no diaphragm and little lung can survive while children with 2 full lungs might not. It has taught us that lung function is not the deciding factor. It has taught us that sometimes the best care in the world is not enough.

It is not because you couldn't offer your cherub the support or resources needed for a special needs child. It is not because you lack patience or skills. We have grieving members who are doctors, nurses... we have parents of survivors who were teenagers themselves. We have grieving members who are amazing, amazing parents and we have parents of survivors who have lost custody of their cherubs. We also have many, many parents of survivors who are amazing and prepared and ready to be wonderful parents to their cherubs. CDH does not care who is ready, who is able, who is best qualified to care for a cherub and who is not.

It is not because you didn't love your cherub enough. If love could spare babies from CDH, this horrible birth defect would not claim one more life. CDH shows no favoritism. It shows no prejudice. It truly is the luck of the draw who survives and who does not. It does not mean you are better or worse than anyone else. It is not fair. Your cherub did not chose to leave you. But they did chose to spend their time here with you. They did not choose wings over feet. They did not chose Heaven over staying here with you.

There is no good answer to why your cherub did not survive... but there are hundreds of answers as to why he or she should have. At CHERUBS, we all know the pain of CDH. The pain and grief of having a child born with a severe birth defect... some grieve over the loss of a healthy child as they struggle to deal with CDH in their surviving cherub and the loss of a dream. Some grieve a never-ending grief of losing the dream and the life of their cherub. But we all grieve, we all have questions that we may never get answers to.

We have all lost a lot. So many parents are grieving the losses of their babies right now. The CDH community has lost so many babies that we have all prayed for, loved from afar. But we have gained a lot too. So have the family members, friends, and even strangers. Each cherub has left their mark on this world and left it a little better than they found it. That is more than most people do in lifetimes that last decades. We should all should follow such beautiful examples as these children have left for us....

March of Dimes March for Babies Walk, Seeing an old friend and Mother's Day

Mother's Day weekend.... ugh.   I hate this holiday.   Don't get me wrong, I love my own mom to pieces and she should absolutely be honored on Sunday, as should my mother-in-law and all moms.  But for a grieving mom, it's a hard day.  It hurts.  A lot.   I literally would give my life for a card with Shane's handprints on it or a paper cup full of daisies from him.  Or now that he'd be 17, I guess a regular card and a hug from him would be more than enough.  But he's not here.   I don't get any more Mother's Days with him.   I know I should be grateful for the ones I did have... but I'm greedy.  I want my little boy here.   I do have good memories of Mother's Day mornings with my ex-husband making me breakfast in bed and Shane toddling into the bedroom behind him and leaning on the bed.  Cards from him, gifts from him (ok so his dad picked them out, but it still counts).   My first Mother's Day gift of a Precious Moments figurine still means the world to me as it sits on a shelf in my office.   I am blessed, I know that.  I am grateful.   But I just really miss Shane right now.  That doesn't mean that I'm not completely in love with my other two sons.  I am, and I am so so blessed to have them in my life and to have the opportunity to be a step-mom.  

It's been crazy busy around here.   CHERUBS is going non-stop with some pretty amazing things going on.   REALLY amazing stuff going on!   And I'm working on my regular job up to 50 hours a week right now.   Plus the boys on 2 baseball teams.  I am literally running on Mountain Dew lately.   But it's all GOOD stuff!  :)

2 weeks ago my hubby, boys and I participated in the March for Babies.   We walked in memory of Shane and in honor of B (Craniosynostois and Preemie) and G (Preemie).    It's rare that I get to do something for all 3 of my boys at once!!!!   Love all 4 of my guys!!!  :)    B even came in 3rd place in the race and G in 4th place!

One of my friends pointed out that Shane's photo (on my shirt) in this photo was "Shane between his 2 brothers".  Yeah, that had the waterworks starting!  LOL

I got to meet Erin finally too!  She walked in the march with us.  She lost Zoe not too long ago to CDH too.  Erin and I have become good friends and I think the world of her and Zoe holds a piece of my heart too.   I get to hang out with Erin some more next week and am really looking forward to it!

And a few weeks ago I got to spend the weekend with one of my BFF's (yes, I said BFF!), Brenda.   That's here in the jeans below.  She's annoyingly gorgeous.  ;)  Brenda and I have been friends for 15 years and she's more like a sister than a friend to me.  Through it all... having Shane, losing Shane, divorce, CHERUBS stuff, losing Debra, miscarriages, etc.... she's been there.   Brenda lost 2 babies to CDH.  I met her a year after she lost Amanda and while she was still pregnant with Nicholas.  She's the 3rd member of CHERUBS.   After 1 phone call, we became friends for love.   Love you very much, Bren!   I never would've made it through the last 11 years without you!

Yes, a lot of my friends have dealt with CDH too... that's how we became friends.  What better friends than those who understand because they've walked in the same shoes?   And so many knew Shane.... not many people really did when we were so isolated for so many years because of his medical issues.  So those that knew him and loved him too.... how can I not feel like they are my family?

Happy Mother's Day to ALL moms this Sunday!!!!!   Whether your children are here or they have wings.  Motherhood doesn't end, ever.   Being a mom is the most wonderful job in the world.  Being a grieving mom (or dad) is the hardest job in the world.  But we're still moms.  

10 years

In a little over 2 weeks, Shane would be gone for 10 years. 10 years. A whole decade.

It literally feels like yesterday I held him. Felt his little arms around my neck. Watched him adjust his glasses and baseball call. Wiped his tummy from a Mic-Key button leak after hooking up gravity formula feedings from an IV bag. Listened to Sesame Street playing on the television all day. Tried to convince him to swallow just one bite of apple sauce. I can still hear him laughing. I can hear his little footsteps on the floor.

It feels like he was just here he is so deep in my heart. He always will be. I miss my son.

I'm not ready for the 10 year mark.

At all.

Scrapbooking

I've been working on Shane's scrapbooks for 10 years now. They are no where near done. I haven't had much time at all to work on them in the past 5 years but now, I'm trying to work on them + scrapbooks for B & G as well.

I took the weekend off of work and pulled out all the photos. Part of me feels so guilty for having so many photos when so many other grieving parents don't. And here they are stuck in boxes. Yeah, I have a lot of guilt about that but then when he was alive I felt guilty for having him then too. I was raised Catholic - guilt is built-in I think. So, with this all this guilt laid upon me to do something with these photos, I set off to organize them.

I saw a great idea on television for people who are overwhelmed with scrapbooking tasks (that would be ME!!!!!!!). You take a sheet cover for each event; birthday, holiday, vacation, whatever... and you seperate the photos for them and put them the sheet cover for that event. It works as a pocket to hold your photos, stickers, template ideas, etc for each event. So when you have time to scrapbook, you just grab a pocket (aka sheet cover) and get to work. If you feel more organized, you can be more productive - that is so true for me. So that's what I did all weekend. ALL weekend. And it's still not done. Because I started on Shane's and then went to all my photos for the past 10 years since he died - and they are a lot because I LOVE taking photos! Then I went through C's (hubby) box of photos and forced him to tell me what each one was so I could organize them. So now I have pockets for all of Shane's photos, my photos, C's photos and our albums together for the boys.

I even have pockets of C's wedding with the ex-wife because hey, that's part of his history and part of the boys... gotta include it all. Even though C thinks I'm strange for including that. But B & G didn't just magically appear when I came into their lives... they have another mom and dad and little sister, they have another step-mom (yes, I'm wife #3 - third time is a charm!). So their books should not be about what *I* like or want to see, it should be about their lives! It's about *them*. I am so excited to be doing books for all 3 of my boys. You all have no idea how happy stickers and photos can make a mom. :)

But going through Shane's photos can be hard. So many memories... I am so grateful for them, for every second. But they can haunt me too. They make me miss him even more, if that's even possible. Some days I am ok with looking at them, other days it still hurts all these years later. It took me 2 years after he died to look at his photos, to go through his things. He was my world for 6 and a half years. He's still a huge part of my heart and always will be. I'll always miss him and I'm ok with that now. I'm just so, so thankful that I had him and got to be his mom.

But his photos are what pushed me to start this blog. I want B & G to get to know him through me and through his photos and this blog. Even though they never met - they are brothers. It's bittersweet that they never met.... they never got to know each other... but then B & G are spared from grief and I am grateful for that.

So the scrapbooking journey begins.... I will probably post photos here of the pages and stories to go with them. I might post weekly or every 6 months. I have a very busy life so this blog is not on the top of my life of priorities. But when I have a quiet weekend here and there or an evening to myself to pull out the glue sticks and paper slicer... I'll post. To be honest, I don't think I want to finish Shane's scrapbook.... it will seem so final..... so this could take a long, long, long time.

And for all you scrapbookers out here... help a mom out please.... I need some templates for Sesame Street, skateboarding, hospitalizations, cherubs. And some more ideas for swimming / lake / beach.... how many beachball pages can one woman do?