1.28.2009

Just a little news

It's been a while since I last posted so I know I'm due. I'm working on my year anniversary post, we're now only 18 days away. I've had a stretch of difficult, just kind of floating through the motions-type days and I've had a stretch of a few ok-i'm-gonna-make-it days. I've also had some really great things start to happen with the foundation that are very exciting. Our website is now officially being designed, we are hoping to have "phase 1" up and running on or around February 16th (Zoe's angelversary) and then we'll phase in each component. We have so much we want to cover, I think the website will constantly be an organic, always updated entity in and of itself. We want to make sure our information is credible, accurate, and helpful. In fact here are some things I'm looking for so if you'd care to write an article, volunteer in some way, or share your story or resources you have found helpful we'd love it!

The Zoe Rose Memorial Foundation is a non-profit entity that will serve to help, support, and educate families of micro-preemies through all stages of life from the diagnosis of high risk pregnancy, through being in the NICU, transitioning home, and ongoing throughout childhood. We will also have a focus on multiples, bereavement support for parents who lose a child or infant at any stage in life beginning in utero and beyond. If you are a parent of a child or children born at 32 weeks and earlier and would like to share your story or a part of your story at any of the above mentioned stages that would be great. If you happen to be a medical professional that works with families, expectant moms, micro-preemie infants, or surviving micro-preemies I would love to hear from you too. I am planning to eventually have a monthly feature article that will hit a topic of interest for parents of micro-preemies, such as what to do if you can't breastfeed your child, how do you bond? How do you give your child the benefits of breastfeeding even if it isn't possible? Or if your child is now 5 years old or 8 or 10 or 15 and has special needs due to being born extremely prematurely I'd love to hear from you about the resources you found or had to fight for that have been helpful either in the private or public sector. Are you a high risk OB or perinatologist? Tell me how we can best disseminate our information so that your patients can take advantage of a network of support and resources?I would love, love, love your input!

Regarding the foundation we'll be having our first annual fundraising golf tournament the first weekend of April...details will be forthcoming so stay tuned and please come and enjoy a day of fun and golf!

And....Maureen from MOST made a great connection for the foundation by introducing me to a gentleman that is spearheading the formation of a Georgia Preemie Health Network and we are going to be a part of this undertaking from the beginning! It is so very exciting when a group of professionals can come together for a common goal...supporting and educating parents and clinicians who care for premature infants. AWESOME!!!

Maureen also responded quickly to a suggestion I made on the MOST website for a special group forum for those of us with triplets or more who have lost one or more of our children and are raising one or more survivors. It was so cool, I put the comment in the email suggestion form and maybe two days later I got a email response that it was good idea. I offered to co-moderate the forum and now, about two or so weeks after the suggestion was made it's up and running and available for the members of MOST who are dealing with this. Again...AWESOME! Thank you Maureen and thank you MOST! I don't know what I would have done without MOST, I happened to join about a week before the girls were born and it was and has continued to be an incredible source of support and information. If you have triplets or more...you MUST join MOST!!! You must!

I also just wanted to send a thank you out to all of you who have posted and shared your personal stories of loss (and ladybug sightings). I know how important it is for me to have someone give me an open opportunity to talk about Zoe and to honestly and truly want to know about her, about us, about the day she died, the life she lived, just anything about her at all. It means so much to me, so I am honored that you would share these stories with me. My heart is very full to know that I have created a safe and supportive space for you to do that. I have always wanted to be totally, brutally honest about my life on this blog. To be authentic, not gloss over the bad and the not so good stuff with smoke and mirrors but to truly share my life, my thoughts, my feelings...it is important for me, because believe it or not, I'm not the greatest, most confident speaker, but writing has become an outlet for me, a type of therapy and a source of healing. I have come to a place where writing helps me just let it out, it helps me process these complex, often competing, emotions that swirl around in my head. It helps me express my lowest lows without fear and has helped me to see the person I want to be. I don't want the last 5 years of my life to make me bitter...and I especially don't want Zoe's death to turn me away from life. As Jeanine tells me over and over...God took Zoe, not me...He's got work for me to do here and I need to honor and respect that. I need to be the mom that Avery and Lily deserve and need. I need to be the wife that Richard deserves and needs. I need to be the daughter, the sister, the friend that all those close to me deserve and need. But I also need a lot myself...I need God in my life to carry me through these times when the thought of having to live through one more day with this pain is more than I can bear. And I need Him to walk beside me and guide me when I can actually get up on my own two feet and do the work He has set out for me to do. I have the desire to BE all of this...to DO all of this...I'm not there yet and I know I'm human...I'm not perfect. I will fall back, I will relapse with my grief...Zoe only died a minute ago, a minute ago. I have to shed this sense that people (and I have no definition for who I think these people are) are expecting me to rise out of the ashes like a phoenix, dust myself off and soar off into the world and never look back. That I am not. I am a mom who desperately wanted children, had them way too early, and lost one of these precious, most beautiful little girls. I am human, I cry, I wail, I make mistakes, I'm not happy all the time and sometimes, yes, I do just want to have a big old pity party and I want the world to stop and I want everyone else to sit and cry with me and say what a tragedy it is that Zoe died. I want everyone I know to miss her as much as I do and I want the people who didn't meet her in person to miss her as if they spent each day with her like I did. Sometimes I want people to really understand what it's like to leave your baby at the hospital and to know what it's really like to have to ask permission to touch your baby...for MONTHS!!! But, again, like Jeanine says to me...I can't make people remember Zoe, I can't make someone who hasn't gone through this know what it's like to be a NICU mom, I can't force people to miss her like I do. I have to trust in God that the people who need to be touched by her and inspired by her and helped by her will be.

I used to think the whole infertility thing, the NICU life, that all of this was a lesson in patience. But it's not...it's a lesson in faith. Truly having faith, faith down to your core, deep inside your soul...faith that when tragedy strikes...it is God's will, it is His plan...and His plan is good. I have to remember that my view of my life and my world are very shortsighted...God sees all...knows all...and IS all. I have to have faith. And I also have to have compassion for myself that I am not made to be perfect and when I slip or backtrack it does not in any way make me less of a person, less of who I am...it makes me human.

I also just want to say that I am honored that you find my writing interesting and compelling enough to keep reading and that you in turn take a moment to share your life with me. I appreciate you all, I appreciate your comments, I appreciate your support, I appreciate how difficult this life on Earth can be.

9 comments:

McTriplet Mommy said...

Keira,
It's "funny" that I would log on this morning and find a new post on your blog a Scott and I were just talking about you last night. The boys have become obsessed (in such an adorable way!) in their baby videos and pictures lately. Last night we were watching videos of them at about 8 or 10 months, playing together, their personalities so strong... and I made a comment to Scott, "You know Keira has these. Keira has videos and pictures of her kids together at this age. Can you imagine sitting here watching these with TWO of the boys because we later lost the third?" I do not in any way mean to discount earlier, newborn loss. I have never (thank God) experienced loss of a child. But it just kind-of hit me last night.

I think of you always. Let me know what I can do for the foundation and the website! I know I have some of the "normal" micropreemie stuff like feeding problems and developmental delays, therapies, Lorne's two years on oxygen, etc. - but I do feel like the most I may have to offer could be about the boys permanent (and quite significant) vision loss. Just let me know - you know where to find me!!

Kara

PS - My uncle and two cousins are BIG golfers and live in Atlanta - can't wait to hear where your tourney will be, I will let them know! :)

Kirk said...

Thank for sharing Keira - you always help me understand where you are coming from, how you feel and even how to talk to others when or if they have lost a child. I don't believe our grief for any loss will ever fully heal until we are united again in heaven! I will continue to pray for your strength.

My girls were not micropreemies but I have a few friends who just last year had singletons very early and another who did a number of years ago - I will let them know about your site and your work.

Thanks!

Kirk said...

Sorry Keira - I'm on my hubby's computer - last comment was from me :)

Dorinda
www.nelsontriplets.blogspot.com

Misty said...

Keira,
I just love reading your blog! I completely agree with you on joining MOST & Maureen is amazing. I roomed with her is Chicago at the QQS. I can't wait to see all of the new things unfold and I will definitely continue to send people your way! JuJu's new word is ladybug (just thought you should know! :))
Misty

The Miller Family said...

I'm not sure if this will help or not but there is this blog that I read about a little 7 month old micropremie whos parents are unbelievable. She is only 6 lbs now and she is really a miracle baby. I think they have been through a lot and definitely seem to want to spread their story and hope and prayers with everyone who will listen. They are the kind of people I would want to talk to if I were looking at being in their situation. You might want to check out their blog if you are not already familiar with it.

http://kayleighannefreeman.blogspot.com/

By the way, I LOVE your blog!

Smiles!
:)Tiffany Miller

Kimberly and the GA Guinn Triplets said...

Hey girl,
You know anything you need for Zoe's Memorial Site just let me know.

Also wanted to let you know that JcPenny has the prettiest ladybug bedspread on sale right now in the kids bedding. I know Lily and Avery share a bed, so I thought it would be so neat to see them sleeping under a bed of ladybugs!
They also have a ladybug shaped pillow!

Naomi Levit said...

i love you, keira. you are truly amazing.

Beth said...

Your post brought tears to my eyes. Your writing has really touched me and has helped me to appreciate every moment with my son. Thank you for that gift. Even though I've never met Zoe, whenever I see a ladybug, I think of her... and you.

archieandshannon said...

Hi! My name is Shannon, I stumbled across your blog and was touched. Your girls are so precious! I delivered twins Ella and Avery at 23 weeks but they did not make it. I was trying to add your blog to mine, but could not figure it out? God bless, Shannon

All time favorite video of Zoe!

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Bible verses that comfort me

"Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord."
~ 2 Corinthians 5:8

"Let the children come to me. Don't stop them! For the Kingdom of God belongs to those who are like these children....Then he took the children in his arms and placed his hands on their heads and blessed them"
~ Mark10:14 & 10:16

"...those who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint"~ Isaiah40:31