Wednesday, September 22, 2010

New Blog

I know that I have mentioned this before, but I originally started this blog with the intentions of keeping up with everything that we do in MJ's name - our Local Project of Project Sweet Peas - MJ's Memories. And at first I was really good about keeping it everything that we were doing with our project, and everything that we have done in MJ's name. But then my grief sort of overcame me for awhile, and this blog became my personal outlet as I journeyed through this new crazy life of mine. I have not kept up to date with anything other then my own thoughts and feelings for awhile, but at the same time, I really want to document what we do for MJ. So I created a whole new blog!! I will keep this blog separate and still use it as my outlet. Now I have a whole new blog dedicated solely to support our efforts in honoring MJ's short life.

The new blog address is and you can reach it here. So for anyone who is wanting to keep up to date with what we do, head on over and check it out :)

And for those of you unfamiliar with what we do in our son's name, let me tell you! We donate care packages to families with a baby in the intensive care unit. We are in the process of filing for our 501c3 paperwork and hopefully should have that complete within weeks! We are a Local Project of the amazing organization Project Sweet Peas, in which I also serve on the Board of Directors. We donate our care packages to Children's Mercy Hospital in Kansas City, MO - the hospital where MJ lived and died. And to Stormont Vail Hospital in Topeka, KS. Since we live in Topeka, we wanted to do something locally, as well. We also have donated memory boxes to Children's Mercy (for parents to have when they lose their baby) and we are planning on donating some to Stormont the end of October. To date we have personally delivered 224 care packages and memory boxes, and next month is our one year anniversary!!

So what do we include in our care packages? Here is a list :

Receiving Blankets
Disposable Cameras
Picture Frames
Stuffed Animals
Isolette Name Plaques
Baby Brush/Comb sets
Baby Caps
Baby Booties
Baby Mittens
Baby Eye Masks
Children's Books
Hand/Foot Molds
Tissue Packs
Journals / Notebooks
Puzzle Books
Baby Lotion
Baby Shampoo
Lip Balm
Hand Sanitizer
Travel Size Toiletries
(Deodorant, Shampoo, Conditioner, Toothbrush, Toothpaste)
Shaving Kits

We also send out our NICU care packages to families with a baby in the NICU, all over the country. If you know someone with a baby in the NICU, please email me at and I will make sure that a package is delivered to them (with no charge).  

So if you have a minute, head on over and check everything out!

Sunday, September 19, 2010

A Love/Hate Relationship

Today we made the hour long trek to Children's Mercy Hospital, just as we did a little over a year ago. But this time we made remembered MJ and his fight, instead of sitting beside him, holding his hand and praying for God to spare his life. Children's Mercy has their annual Memorial Service for all of the children and babies that have lost their battles. There was even a butterfly release:

As we were leaving I realized that I have a love/hate relationship with things like this. On one hand, I am so thankful for an opportunity like this to remember MJ and experience something so beautiful. The pain I felt today, was a good pain, it was a pain that allowed me to grieve. So many days things are so busy in my life, that I just never have time to cry and just grieve. Or I put off my feelings attempting to protect my heart. But today was different, I could cry and grieve and it was all okay. It was so beautiful, being with so many parents that have gone through what we went through, and being able to remember our babies.

But at the same time I hate it. I hate that we have to participate in a Memorial Ceremony instead of having bliss with both of our babies. I was sitting there today and just thinking, oh beautiful it was, and how much I really didn't want to be there at the same time.

Throughout the continuous tears during the ceremony Will was just so awesome. It was like he knew when I just needed him to cuddle, and when I needed him to make me laugh. He is not normally very cuddly lately, as it seems like all he wants to do it run around - he has a ton of energy! But as soon as the service started he just wanted to cuddle in my lap. That hour or so was really a reflection of the past year. Having Will, MJ's twin, to raise in the aftermath of MJ's death did not make losing MJ any easier (as so many people like to point out that I have Will, so I should be happy with him). What Will has done for me is make me smile through my tears and my heartache. He lifts me up when I am down, and makes me laugh when I need it. He gives me a reason to not just get up and out of bed each day, but to live and enjoy life.

                                                       My sweet little Monkey Man

During the ceremony today there was a beautiful song played called Godspeed, (Sweet Dreams). I find great comfort in the lyrics of so many songs and poems, and this is another one to add to my list. It is written by the Dixie Chicks, and part of the song goes:

Godspeed, little one
Sweet dreams, little one
Oh, my love will fly
to you each night
on angels wings
Godspeed, sweet dreams.

Part of the ceremony included a quilt dedication. Throughout the halls of the hospital quilts are hung , each with a square for a child that passed away at Chilren's Mercy. We made a square for MJ and submitted it today. It will be dedicated next year at the Memorial Service, but here is a picture of it:

Tuesday, September 14, 2010


So when I first started this blog, it was to update everyone on the progress of the foundation we started in MJ's name: MJ's Memories, which is a Local Project of Project Sweet Peas. At first, that's all I really wrote about, and then slowly it started to become my outlet for my grief. Anyway you look at it, this blog has really helped me in the past year or so.

So since I haven't updated in awhile about MJ's Memories, here is an update :) After our Butterflies and Balloons Rememberance Release, we donated 53 gift bags to Children's Mercy Hospital in Kansas City, MO, in honor of MJ's Angel Day, August 29. 35 were Memory Boxes that will be given to families that have lost their baby while in the intensive care unit at Children's Mercy. In each memory box we included a knit blanket, knitted by my mother-in-law (they are so beautiful!), a broken heart pendant with a poem that reads, " A part of me is broken My heart has split in two A part of me is missing Because you took a piece with you A part of me’s not whole My heart will never be the same And itcannot be mended Until we meet again"  , a wisp of hair bag with a poem that reads, "With your last breath of air, We cry, knowing it is unfair, but the pain I can bare, Because I'll always have A Wisp of your hair"  a disposable camera, a baby cap, a photo frame with a baby angel, and a stuffed animal. Here is a photo of a girl memory box:

We donated 35, one for each day that MJ was alive. We also donated 18 NICU gift bags, 8 girl and 10 boy. Here is a photo with all of our donations that day!

Today we are sending out three more bags. My aunt has a family friend that delivered triplet girls at 27 weeks, 4 days. They have had a rough start, but hopefully are stabilizing. They are expecting a long NICU stay for all of the girls. Please keep this family in your thoughts and prayers. 

We are also doing a t-shirt fundraiser soon! If you are interested in purchasing a t-shirt, please keep us in the back of your mind, and look for a post soon on our t-shirt design!

We are incredibly honored to be able to do so many wonderful things in memory of our sweet son. To date we have personally delivered or mailed out  215 gift bags or memory boxes to families in need. Next month is our one year anniversary, we are so incredibly thankful for all of the support that we have been given in honoring our son. If you have thought about us, donated to us, or helped us fundraise over the past 11 months - THANK YOU!!!!

Sunday, September 12, 2010

Someone Else's Star

As Fall approaches and the weather changes and the days get cooler and shorter, I simply cannot believe how long its been since we said goodbye to MJ. Its very hard to believe that this time last year we were left to pick up the pieces. Our families said goodbye (mine to the Chicago area, and a sister in NY, and Willie's to Nevada, but thankfully one of my sister's lives only an hour away), and slowley but surely the calls to see how we were doing stopped, and the friends faded away with time. We were heartbroken and lost. Completely and utterly lost.

I swear I don't remember anything that happened during the first month or so after MJ died. Willie was planing on coaching the freshman football team at the school he works at, but when we realized how sick MJ was, he had to step down. He simply couldn't bear to be coaching football while his son was fighting for his life each and every day. After we lost MJ, the other coaches told him that if he wanted to come to the games and help coach, he still could. About three weeks after MJ died, Willie decided he wanted to go to the games and help out. I thought it was a good idea, it would get our minds off of everything for awhile, and it would get me out of the house, I was still off of work for awhile, and Willie headed back already. I am friends with another one of the coaches wives, and so I called her and we planned on meeting up at the game. I had never met any of the other wives, and so we were all introduced Throughout the game, we small talk chatted, and one of them was talking to me and saying how cute Will was and I said, well, he's a twin, and his twin passed away. She said she knew and she was so sorry. Then she said she just couldn't believe that I was out and at the game. She said she couldn't imagine doing what I was doing. My reaction was like, how am I supposed to be? Explain to me how I am supposed to live, and how we are to go on. It was my first realization that unless you have lost a child, you will simply never understand. Life has to go on. Life does go on. With or without you. While all I wanted to do was fall apart and completely check out of life, I simply could not. I had to go on, I had to get up each day, and get dressed, and go to work and take care of the baby that I had in my arms. I still am utterly surprised at how things have played out the past year. I don't talk to many friends that I had prior to losing MJ. Things with some of my family have disgusted me entirely. I no longer care about so many things. One family member remarked on how I am no longer the happy, bubbly girl that I had always been. Um, really? How on Earth would you expect me to be? My son died, dammit!

My entire life is filled with bittersweet moments. Every smile, every joy, everything will forever be cracked, I will never fully smile, and my heart will never fully recover. There will never be anymore complete family pictures. Sometimes I can't believe how far I have come in the past year, and at other times I feel as though I have pushed my grief aside and never truly dealt with MJ's death. I have talked with many other parents who have lost their own children, and the consensus seems to be seven years. I takes about seven year for the pain to lessen, and for life to not seem so bad. While it never truly goes away, seven years seems to make it more bearable.

We are still waiting for our rainbow, waiting for life's blows to lessen, and for things to start to fall into place or us. We are still trying to conceive again. I've just about lost hope that that's going to happen. I'm in the middle of my fourth month of fertility medicine and I just feel like we should be happy with what we have been given, and stop wishing for things to go right. It's so hard because its that time in our life when so many of our friends and family are getting pregnant and having healthy babies. Some days I feel like I hate facebook, seeing so many new family pictures and stupid sonogram photos. And each month I fall apart just a little more when it doesn't happen. I heard the song 'Someone Else's Star' by Bryan White the other day, and I can so closely relate to this right now. The lyrics go .  . . .

I guess I must be wishing on
Someone else’s star
It seems like someone else keeps getting
What I’m wishing for
Why can’t I be as lucky
As those other people are
I guess I must be wishing
On someone else’s star