Saturday, December 18, 2010

A Bad Dream

So last night I had a dream about MJ. Its only the third time I have dreamt about him. The other two were good dreams, this one was not. I dreamt we were at my parents house for the holidays and I suddenly realized that MJ was missing and that he was still in the hospital at Children's Mercy and I hadn't gone and seen him in months, and never called to check on him and see how he was doing. I started crying and I thought I was this horrible mother that left her baby in the NICU and never looked back. I wanted to pick up and go and just leave (my parents house is in Chicago, and Children's Mercy is in Kansas City), but it just wasn't a feasible thing to do. I was crying and crying because I had left MJ for months. I wondered how big he was getting, and how much better he was doing. I remember thinking that when I was able to finally see him, I could probably old him, and he would be so big by now.

And then I woke up, and I realized that the reason I was missing MJ was because he isn't here, he isn't at Children's Mercy, and he never will be again. His ashes rest on my mantle, and thats the closest thing I will ever have to holding him again.

It was a bad dream, and while I think all the time how I love having dreams about my son, I really hope that I never have one like this again.

Tuesday, December 14, 2010

Christmas Thoughts

So this year I am totally in the Christmas spirit (I guess). We have all of our decorations up, almost all of our presents bought (everytime I think I am done, I think of something else I want to buy!), and this weekend we are baking cookies with my sister. We went a little overboard this year on presents for Will. I think its because in my own way I am trying to make up for last year. We tried our very best last year to pretend as though Christmas wasn't happening. We didn't buy presents, didn't decorate, didn't do anything. So this year, Will has a TON of presents to open on Christmas Day. Our stockings are adorable! I bought them off a lady on Etsy and I just love how they turned out.

So we have our stockings for all of us. I don't really think that I can bear the thought of having MJ's stocking empty on Christmas Day. We bought him an ornament, and we also had a brick engraved for him at our local zoo. But you can't really wrap up a brick that is being laid at the zoo, so all that will be in his stocking will be an ornament. If any other BLM's have any ideas of what else I could have for MJ in his stocking, please let me know! I am really excited about the brick for him, though. It will be laid in front of the Children's Zoo, and it says, "Angel MJ Loved 4 Ever". We already are planning on having Will's 2nd birthday party there, so we will have a nice photo opp. I think it will be really cute. But other then that, that's all I got.

As much as I am actually excited about Christmas this year, I am also not. Its hard, each day, each month, and each year it gets harder, and easier at the same time. I think only another parent of an angel can comprehend that statement.

Anyway, the year is fastly ending, and the emotions are ever changing. Missing my baby, hoping for another one, and raising Will takes a lot of my time! I am excited and scared, sad and happy all at the same time. My emotions are like a box of chocolates, you never know what you are going to get!

Wednesday, December 8, 2010

Friday . . .

We head to the RE for our very first cycle of IUI (intra uterine insemination). Today I had my sonogram to see how many eggs I had and what type of quality they were. I have two eggs that are looking pretty good!! I am SO excited, nervous, and scared all at the same time. I am excited at the possibility that we will get pregnant and have our rainbow baby. I am scared that we won't get pregnant and this won't work. We enough money to cover 2-3 cycles. So hopefully in 2-3 months we'll have our answer: yes this works! or no this won't. My doctor is very confident that is will work and this will be the answer. I am not so confident. Not because I don't want to believe it, but because I am so scared it won't work.

The thought is so incredibly elusive to me right now that we could actually become pregnant again. I remember the same thoughts when we were trying the first time, so maybe that means something? Who really knows.

We are supposed to take a pregnancy test on Christmas Eve to see if this IUI worked or not. Honestly, that is probably not going to happen. We'll probably wait until the Monday after to take a test. I can't imagine dealing with the dissapointment on Christmas, so we'll wait. If my period comes, it will be a lot easier to swallow then looking at another negative pregnacy test. I feel like the stupid single line just mocks me every month! (I know, crazy thoughts coming in here! But with all the meds I am on, I deserve it, right?)

We are actually celebrating Christmas this year. Last year, it was all we could do to hold it together. This year, we have our tree up already, have our decorations up, and have our lights up. We ordered stockings from a lady on Etsy, and they should be in by the end of the week. I am really excited about them! I think they are going to turn out super cute. We got one for all of us, me, Willie, Will, and MJ. I'll put pictures up when I get them in! That is really the only thing we are waiting on to complete our Christmas decor. This weekend all I really want to do is relax and bake Christmas cookies! I know, not the best way to lose weight, but I am trying! I keep wavering back and forth between 32 lbs and 33 lbs of weight lost. I seem to be a little stuck! But about 10 days ago, I was stuck at 29 lbs and 30 lbs weight lost, so I guess I am moving forward. I would really LOVE to be at 40 lbs weight lost before our next IUI cycle (if need be). But realistically, its the holidays, and that might just not happen. At work I have three Christmas parties in the next ten days!! Yes THREE!! And we are baking cookies this weekend, and Willie and I are planning a YUMMY Christmas Eve dinner. This I am very excited about. It is going to be a first for us, we are hosting Christmas in Kansas with family! Willie is going to cook prime rib (YUMMY) and we are going to have a delicious, calorie filled dinner. I cannot wait!

I have been going to Jazzercise 4-5 days a week and I just LOVE it. So even if I maintain, or only lose a few more pounds in the next few weeks, I will be happy. I know that I am losing inches and toning my body. My legs are actually starting to look good again! I played college softball and was a catcher, so I used to have these awesome legs that were all muscle. Then my junior year I blew my knee out and gained about 60 pounds over the next five years (including baby weight). So I am down 32 pounds, and really working on getting back to where I was. I would love, love, love to be where I was in college before my knee injury. But the facts are that if that happens, then that means we didn't get pregnant. So while I really want to lose weight and get fit again, I really want to be pregnant too! So I decided that all I can do is eat healthy, keep working out, keep going with fertility treatments and work on my mental state of mind (thank you therapist!). What will happen simply will.*

*Authors note: this is how I feel today, at this very moment. This will probably not be a consistent attitude. I may be sad, happy, or just plain pissed off tomorrow, next week, or even in the next hour. I am working on being a stable, happy person, but losing my son has made me just a bit crazy. (I think every BLM can agree with that!

Thursday, December 2, 2010

A Much Needed Break

Whew! It's been awhile since I have posted last! I didn't necesarily mean to, its just something that kind of happened, and something that I think I really needed. Its been pretty busy and emotional all at the same time around here lately and it really helped to be electronically out of it the past month or so. I deactivated my facebook account for the past month, too, and so I have been out of the loop on so many things!

But I needed it, I really did. I didn't realize how much I was hurting, until it all came down on me. With the holidays coming up, and the whole infertilty thing sticking a big pain in my a$$, the break was much needed and much wanted. I started seeing a counselor again, and let me tell you - she is great! She is just the counselor that I need. We are working on a lot of things, and she is helping me to recognize that it really is okay for me to be happy. So I am working on it. Even if I think that 90% is okay, it really isn't. It's not fair to Will or Willie if I am only 90% okay. I need to 100%, and while I am not there yet, someday I will be. And hopefully someday soon.

I started working out again, and I think that has really helped boost my spirits. I didn't realize how much I missed feeling sore and working out, until I got it back. I am doing Jazzercise, and omg, I LOVE it! It's so much fun, and I am going 3-4 times per week. I am sore, I am losing weight (and inches!) and just overall just feeling good about myself again. So far I have lost 32 pounds! Mind you, I started my weight loss way before I started Jazzercise, so I am hoping that this will help me kick up the pace on losing weight.

So . . . . on the infertility front, we just started our first IUI cycle. I am nervous, scared, and hopefull all at the same time. I am on day 3 of my meds, and then next Wednesday I go in to see how many eggies I have and what type of quality they are. Then probably either Dec 11 or Dec 13 we will go in for the actual IUI procedure. I really, really hope that this works. We are paying for everything out of pocket, and so with each cycle brings a bigger hit to our savings account. But it will be worth it, worth every penny if/when I look into my baby's eyes. Hopefully soon . . .

Thursday, November 4, 2010

So Many Thoughts

These last few days have been really hard for me for some reason. I don't know why, but I feel like everything is hitting me all over again. I watched MJ's video again, went through those final moments and days and asked myself the killer question: why? Why did my son have to die? Why must I go through everything in life that God has asked me to?

There are so many questions and not enough answers. I don't know why MJ died and I never will. I will never know why God has chosen the life that He has for me. I look at those around me and sometimes I think that man, I would love to have that life. I would love to worry about stupid pointless things and actually care enough to vote. It all seems so pointless to me. Why worry or care about things as pointless as who wins an election? I bear the pain of losing my son each and every day and in each and every way. Sometimes I feel like I have lost all hope in being happy again. Don't get me wrong, I smile, I  laugh, my living son brings me an immeasurable amount of joy. But losing MJ and now dealing with Secondary Infertility has really brought some heaviness to my heart.

And with the holidays quickly approaching the days seem to get harder and harder. Last year Willie and I did our very best to 'skip' Christmas. We didn't buy any gifts, we didn't decorate our house, we simply went through the days trying as best we could to hold life together. This year is different. I want to give Will a wonderful Christmas and be able to actually enjoy the holiday. We are having Christmas at our house this year - a first for us. I already have a list for Will and we have already started purchasing things for him. I think I somehow want to make up for his lack of a first christmas. (I even asked everyone to not buy anything that said 'Baby's First Christmas' on it. We have already decided what we are going to do for MJ for Christmas as well. We are buying him a brick at our local zoo, to be placed near the children's petting zoo. We also plan on having Will's birthday party there next year.

So it's all planned out, and now the emotions are coming and the tears have definetly been flowing today. It's really hit me like a ton of bricks. Maybe it also has something to do with the fact that Aunt Flow came on Saturday, three days late to it really had me thinking something good was going to happen for once. This month we are taking it off of fertility medication. And next month we will do our first round of IUI. Our insurance covers $0 of fertility treatment, so its going to cost around $1,000 each month to do. I really hope that IUI will work and we will have our rainbow baby on the way. We really don't have a whole lot of money to be able to do more then two, maybe three rounds of IUI. Maybe, just maybe we will get lucky and it will happen on our first round. Our RE thinks we have an 'excellent' chance of becoming pregnant. So hopefully she is right and it won't be too hard or costly. But I would give every dollar I had for a baby right now. That's what gets me too, so much. I would literally give my life to have been able to save MJ and I couldn't. And there are so many people who complain about there kids or say they can't handle another one because it would be too costly or this or that. What I wouldn't give to be able to just become pregnant.

I have this fantasy where we become pregnant again, have a healthy baby and six weeks later find out we are pregnant again on 'accident'. I would LOVE to wake up one morning and think, oh my god, I might be pregnant and actually be. I would LOVE to take a test and have it be positive. I have literally no idea how people get pregnant on accident. The idea of an accidental pregnancy simply astonishs me. It's almost mystifying to me, really. But it happens, and it has happened to a lot of people that I know. And again, I wonder why God has chosen me for this path of heartache and pain, when other people are chosen for and ease of a life. (Or at least what I consider to be ease.) I know they may not think its easy, but then again, they have never had to say goodbye to their child.

Tuesday, October 19, 2010

So I know that I haven't posted in awhile, I just guess I don't really have anything to say. I miss MJ, as always, and things are starting to get better, but then at the same time things are just as bad as every, or they get worse. I never know my feelings I guess!
I read a quote today that really resonated with me. It goes Healing from the death of your child is much like wisdom; it can't be forced, yet it comes upon you if you let it....~ Dr. Tom Frantz, Advisory Member, TCF, Buffalo, NY

So maybe I guess what I am trying to say is that I am healing. I can't force it to happen, it just has to. And just like healing from physical pain, the emotional pain will have its ups and downs. At times I feel good and at times when I try to do too much, the pain comes ripping through me and I feel like I am back where I started, in those awful, painful weeks following the death of my son. But its getting better. It will never be 'all good', it will always be painful, and the scar will always last, but I am getting by. Day by day, week by week, and month by month, it is getting better.

We met with our RE a few weeks ago and have a plan to try and get pregnant again. But that will be very expensive, and it is honestly money that we do not have. So we are saving money and our goal is to start with IUI in January. Our RE thinks we have an excellent chance of getting pregnant again - we just need the money to do so and hopefully we will soon have our rainbow.

Monday, October 11, 2010

Patches the Bear Comes for a Visit

Patches the Bear has come for a visit! Patches has gone around Canada and the United States 'patching' up hearts one at a time. I am so happy that he has come and visit me! Patches came just before I left for New Orleans to visit my very good friends (who also happen to be babylost mommas - both of their babies were born with CDH, the same birth defect as MJ). It was a wonderful visit and Patches kept MJ company while we were gone! Here is Patches with MJ's ashes, the teddy bear that was always by his bedside, the figurine made for us by the Midnight Orange, and the beautiful pendant Beckie from Beckie's Infertility Journey sent me.

After we got home, Patches hung out with the portrait we had commissioned after we lost MJ. We never had any pictures of our boys together without MJ intubated until after we lost him. I love this picture of them, it makes me think of how amazing it would have been to have both of them together, healthy and whole.

Patches then hung out a little with Will, MJ's twin in his crib.

The poem on the pillow reads:

You have this twin brother,
He loves you very much,
But you'll never get to see him,
Or feel his gentle touch

He had to go away you see,
Through God's Garden gates,
Though he longs to meet you,
Heaven's where he waits

You have this twin brother,
He's sending you his love,
Although he longs to be with you,
He watches from above,

He grew his Angel wings you see,
Through none of us were ready,
On one of Heaven's clouds he sleeps,
Cuddling his teddy

You have this twin brother,
He'd love to come and play,
But for all eternity
In the sky is where he'll stay

God had a plan you see,
He needs him by his side,
He's shown him how to use his wings
Through Heaven's clouds he glides

You have this twin brother,
And though you are apart,
The love that you feel for him,
Will remain forever in your heart.

I don't think I need to explain what that poem means to me. I don't know who wrote it, it was sent to me.

Patches is now watching over Will as he sleeps. He will be mailed out hopefully tomorrow to his next stop. We have not been able to take MJ's name down off of the wall in their room just yet. We keep saying that we need to, but we have just not yet had it in our hearts to do so. So Patches is watching over Will resting in MJ's name . . . .

Farewll Patches! You will be missed in our household, but we know that you will be busy comforting so many other families in your journey.

Friday, October 1, 2010

New Blog Friday!

Aly over at The Infertility Overachievers has decided to feature me on her New Blog Friday! I love reading her blog and was so excited when she asked if I wanted to be on New Blog Friday. So to all of the people heading over here from there, WELCOME to my blog! I know you read a little bit about me over there, but here you can see more of my life and my sons.

The reason that I started blogging was to document the foundation that we started MJ's name: MJ's Memories. We are a Local Project of Project Sweet Peas and we donate care packages to families with a baby in the Neonatal Intensive Care Unit, where MJ lived his entire life. This month is actually our One Year Anniversary!!

Slowly but surely this blog became my outlet to everything through my grief. Being a mother to an Angel is not easy. After the funeral, people slowly stop calling and stopping by. The people who you thought were your friends pretend like you don't exist - its almost as if you have a plague. And throughout everything, all you want to do is talk about your baby. We lost MJ a little over a year ago and every day I fight for to validate his life. Every day I find ways to include him in our family. We are a family of four, but people only see three.

So here, on my blog, I can yell and scream and cry and laugh about it all. So thank you for stopping over to check me out, and to everyone who already reads my blog, thank you for allowing me to share my sons with you. They are both a huge part of my life.

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

Monday, August 30, 2010

Butterflies and Balloons and Remembering Our Very Much Loved Angels

Yesterday we celebrated MJ's short life with a Butterflies and Balloons Rememberance Release. I can't thank everyone who came, bought butterflies and balloons, or just supported us from afar enough for all of the love and support we felt yesterday.

It was a very emotional day for us, knowing that one year ago we had to say goodbye to our sweet MJ. Not a day goes by when we don't think of him and what should be. The only thing that we can do now is try to make him proud, and live each day to the fullest in him memory.

Here are a few photos from the Release. If you purchased a Butterfly and Balloon for your angel, I will email a picture of it shortly. Thank you again!

Writing on Balloons and Getting Ready

Our Angels Remembered . . .

Lost in thoughts of my sweet MJ

Releasing the Balloons

Releasing the Butterflies

Friday, August 27, 2010

365 Days

Or one year ago we knew we were going to lose MJ. We hope and prayed that our fears would not come true, but they did. I have never actually wrote everything that happened that day, and so I am going to now. I apologize that it is so long, but I want to remember everything from those last hours with my son. Here it goes . . .

It all started on my birthday, August 28 2009. We woke up that day after a few rough days with MJ, and were hoping for a much better day. After all, it was my birthday! What better present could I get then a good day with my sons. We called the hospital and they said that MJ was doing great, he had a really good night, and the goal for the day was to turn down his oxygen. He was one 98-99% oxygen, and he really needed to start making a turn and breathing more on his own. Since he was doing okay, Willie decided to go to work, at that point we were preparing for a year long stay in the NICU with MJ, and so Willie was trying to conserve his days off of work. Will had his month check up at the doctor that morning, and so I took him in late morning. After our appointment I stopped by my work to have some birthday treats, and the plan was to relax a little in the afternoon before Willie got off work and we would go see MJ. At noon I called the hospital again, and he was doing even better! I was so elated, MJ was giving me the best birthday present ever. His oxygen had been turned down to the mid 80s, and they thought they would be able to turn it down more in the afternoon. The nurse actually said, "We can't turn it down fast enough, he is doing so great!"

After a quiet afternoon, we left for the hospital. We walked up to his room filled with hope, our son was having a great day in the NICU, and it was my birthday. We never had a clue what we were about to walk into. After we scrubbed in, the entered his room to find seven to eight doctors crowded around MJ. We didn't have a clue what was going on, and waited in the wings of the room as the doctors tried to figure out what was wrong. He was have a very bad bout with pulmonary hypertension, and had a ton of pressure in his chest. His heart beat was erratic at best, and it seemed as though his little body was shutting down. We were only able to get a few peaks at MJ while the doctors were trying to find the best solution. Once we were able to get a clear look at him, we both knew. It's a moment I will never forget, a moment that I knew my son was going to die. He had enough, he couldn't fight anymore. It was something that came over me that I will never be able to fully describe, almost like someone was telling me he was done, and just couldn't fight anymore. I had to leave the room to gather myself, and went to go call my mom and sister to tell them to come to the hospital.

I went to the parent break room to use the phone. We weren't allowed to have cell phones in the NICU, and so I had left my phone in the car. My sister lived an hour from the hospital, and my mom was in for the weekend, and was spending the night with her. I struggled to remember my mom's cell phone, and so I called my dad in Chicago, hoping that he would be home. He was home, and started crying and told him that MJ was not doing very well. I asked for my mom's cell phone number, and my dad asked how bad it was. I never forget my response, "Daddy, he looks like he is dying." My dad started crying, and then I called my mom. All I had to say was that MJ was not doing very well, and my said, "Okay, we're on our way, give us an hour."

The next hour or so, Willie and I struggled for composure. We had been hit with a brick, and were praying that MJ would pull through and survive. Our nurse arranged for a room for us to sleep in that night in the NICU. They didn't want us leaving the hospital for fear he would die while we were gone. We wouldn't have left anyway, we knew that MJ needed us. The doctors discussed our options, and said that for night his goal was to remain stable. His oxygen was back at 100% support, and he was oxygenating (the amount of oxygen his blood was getting) was in the around 70%. His goal was to be at least 92% oxygen.

After we got settled in our room Willie ran to the hospital cafeteria to get us some dinner. It was the last time we would eat there, after we had basically lived there for 35 days. The food tasted bland and was cold.

After awhile my mom and sister got there, and we all struggled to grasp what was happening. His little body was turning into a color mixed with gray and green. Everything was shutting down, and the doctors were doing all they could do to keep him alive. My mom told me that my godmother and her son were on their way to the hospital, too. She was in town visiting him for the weekend, as he goes to school at the University of Kansas. After awhile they got there. It was such an amazing feeling to be able to introduce my son to only the seventh and eighth people to meet him other then the amazing doctors and nurses who took care of him on a daily basis. So many of our family live out of town, and so they could not meet him. We told everyone to wait until he was more stable, or able to come home before coming out to visit. We all took turns visiting MJ for a few hours. Only two people could be at his bedside at a time.

Around midnight that night everyone left. My mom and sister had plans to come back first thing in the morning, and we were going to try and get a good night of sleep. We went and said one last goodnight to MJ, thanking God for another day with our son. I was so thankful that he had made it through my birthday. I didn't want to remember that on my birthday my son died. (Although I will always remember it as the day before my son died.) We were physically and emotionally exhausted. We both layed down and fell asleep. We didn't have a change of clothes, toothbrush, or anything else with us for that matter. We simply slept on a bed in the clothes we had on.

I woke up the next morning about 7 am to feed Will. We were not allowed to see MJ until 8 am because the doctors were doing rounds. At 8 am, I left Willie and Will to see how MJ was doing. I walked in to find our favorite nurse, who I thank God that she was our nurse that day. We could never have gotten through the day without her. I walked over to MJ and kissed him good morning. Megan walked over and I asked her how he was doing. She had asked what time I had last been in to see him. I told her around midnight or so and she told me that he was doing worse. His was now oxygenating around 60%, and his arms and legs were turning blue due to the lack of oxygen. I told her I needed to go get my husband and I would be right back.

I woke Willie up and told him we needed to go see MJ, he was doing worse. We were gone maybe 15 minutes, and we walked in again to find five or so doctors huddled around MJ. He was having another erratic hearbeat spell due to the pulmonary hypertension and pressure in his chest. We quietly took a seat in the corner while the doctors talked over their plan of action. Megan came over to us and said that ther was something that she needed to talk to us about, and she wanted to be the one to tell us. They thought that it was the day, and that at some point that day we would have to make a choice to hold MJ, or let him die alone on his bed. We had never held him yet, and even though we knew in our hearts she was right, we still felt as though we were hit with another bag of bricks. We cried and looked at each other wondering how we could ever make that decision. A few minutes later, one of the doctors came over to tell us the same thing. She said that they weren't out of options yet, but it was coming to that point. She asked us if we wanted them to continue treatments and try to save his life, or what else we wanted to do. We said save him, please save our son.

A little while later a cardiologist specialist came in to see MJ. He was obivously on his way to play golf, or do some other Saturday activity. But first he came to try and save my son. He looked over ECHO results and came over to talk to us. He said he didn't know why MJ was having the erratic heart spells that he was having, but that it was due to the pulmonary hypertension, and pressure in his chest. He thought he had a few tricks up his sleeve that the doctors were going to try. They started him on a new medicine, and said that they would give it an hour to work, and then they would try the next one.

My mom and sister got there shortly and we caught them up to speed with the plan to save MJ. The next few hours we stayed and prayed by his bedside. Every hour or so, they would start him on a new medicine, hoping that one would start to work. His oxygenation kept falling, from the 60s, to the 50s, and then to the 40s. At some point that day my mom and sister went out to get some food for us. I think it was Wendy's. I remember it tasting bland and not good. They forced us to eat, as we didn't really want to have anything to do with it. My sister and I were in the parent room by ourselves at some point, and she said that she had found an organization called Now I Lay Me Down to Sleep, and they would come take professional photos of us that day, if the worst were to happen. We had only two medicines left to try, and so I asked her to call them in two hours if these two didn't work. I told her that if the worst came, I wanted her to hold him. She promised that she would.

The next two hours came and went with no change, and his oxygenation still decreasing with each hour. The doctors came to us and said they wanted to try one last thing: switching his ventilator. He had been on the oscillating, or jet vent, and they thought that switching him to the normal, gentle vent would help decrease the pressure in his chest.  They did say that there was some arugment between the doctors on whether it would work or not, and asked us what we wanted. We said try it, do anything to help him. Amid arguments from some of the doctors, his ventilator was changed. The thought was that either it would help him, or it would cause him to plummet even more. We all held our breath and waited to see what was going to happen. There was no change, he didn't plummet, but he didn't get any better. We were going to give him an hour and then evaluate our options. The next hour was much of the same, his oxygenation was going down. I remember when it hit 25% I asked our nurse how much lower it could go, she said not much. I covered his feet because they were so cold and blue because there was no oxygen going to them. She said that his body was keeping the oxygen for his major organs, and so his extremities were getting virtually none. My godmother and her son had come back to the hospital to be with us, knowing that we were about to say goodbye to MJ.

Willie and I looked at each other, each afraid of what to say, because there was really only one option left for us. Finally I said, I want to hold my son, I want to hold him. Willie agreed, and we both cried, knowing that it would be our first and last time holding him.
Megan came over to us and asked us what we wanted to do, the time was here, and we had to make a decision. We said we wanted to hold him. I asked her if the rest of my family could come in, as we had all been taking turns throughout the day to be with him. She said yes, that in situations like ours all the rules were thrown out the window. We prepared for everything that was about to come. Megan called Now I Lay Me Down to Sleep, and arranged for the chaplain to baptize Will and MJ. We really wanted them to have that together. I couldn't imagine baptizing MJ, and not Will. It would be the last and first thing they would do together as twins.

The doctors came and confirmed our decision with us. And they the room swarmed with people helping to prepare us to hold MJ. You see, he was on a ventilator, which made it tricky. But then you also had to add in all of the other tubes that he was attached to, which included a drainage tube (from his chest, after his surgery that had not been removed yet), and probably at least twenty different types of medicine. That day, they tried EVERYTHING they could think of to keep him alive. It probably took about 30 minutes to prepare for him to be moved. Right before he was about to be moved, Megan told us that sometimes, when they moved babies as critical as him, it caused them to crash and their heart to stop beating. She asked us what we wanted to do if that happened. Did we want them to put him back on the table, and perform CPR, or did we want them to continue to give him to us and let us hold him. She explained that performing CPR on him would be pure chaos, with an extra 20 or so people in the room, and it would be very traumatic to see how it would happen for us. We told her that we wanted him, we wanted him in our arms, and we wanted to finally hold our son.

We asked for them to take away the paralytic that he was on, in hopes that he would open his eyes for us. He never did, but thought that maybe he would.

I don't think that I will ever forget the moment he was placed in my arms. Tears of joy and sadness rushed down my face. It's really an indescribale feeling, knowing that I was finally holding my son, and the pure joy that I had in my heart, but then the pure devastation knowing that it would be my last. My husband looked at me and smiled, and said, look baby, he pointed to the screen where MJ's vitals were. His oxygenation had shot up to 80%, the best it had been in over 24 hours! He knew that his mother was holding him, finally. I was so happy, I knew, I just knew that MJ knew I was holding him. We took a ton of pictures. Our family of four was finally together for the first and last time, and as sad as it was knowing it was our last, we still were able to find joy in that moment, our final moments with MJ. After awhile Willie whispered to me that he knew we had made the right decision, MJ's heart rate had dropped dramatically, and was going down. At that point we switched and Willie was able to hold MJ for the first and last time. My mom and sister had brought us a change of clothes when they had got to the hospital that day, and so I changed quickly, as I knew the photographer was nearly there. I knew that the pictures we were about to take I would treasure forever, and I did want to be dressed a little nicer then I was.

Just as the photographer got there, we had switched again, and I was holding MJ again. She explained that she herself was a NICU nurse, and she was so sorry that she had to be there. We took more photos, and then the chaplain came and it was time to baptize our twins. Since MJ was dressed in nothing more then a diaper, we did the same for Will. It would be the first and only time that our twins would be photographed dressed alike, and in nothing more then a diaper. The chaplain said a few beautiful words, and then they were both baptized. We spent a few more moments with MJ and we knew that time was nearing for us. Earlier I had asked Megan how MJ would die, how long would it take. She said that he was on so much medicine that it could take a few hours, or a day or so. She said it could be dragged out for a long time, putting us all in much more pain then we wanted. We knew that we didn't want that for MJ. Somehow letting him go sooner was more dignified to me. Letting him go on our terms was better then for him to die slowly. And so we had let the doctors know that we were ready. We had our options they told us, they could take away just the medicine, just the ventilator, or both.

Slowly the took away all of the medicine he was one, except for the pain medicine, we always wanted to make sure that he was never in any pain. It took a good 15 minutes to unhook and cap all of the medicine he had. Then they asked if we were ready for the ventilator to be taken out. We had never seen him without it, but we were ready as we were ever going to be. They took it out, and for the first time in his short life, we were able to see him without a tube stuck down his throat. He was so beautiful and amazing, it broughts tears to our eyes. A few minutes later the doctor came to check if his heart was still beating. The room was so quiet, and Willie and I weren't really sure was she was doing. I had thought that as soon as the vent was taken out, he would be gone. But then I realized that it was not the case, and the were checking his heartbeat. A few more minutes after that, she checked again. And she whispered two words to me that will haunt me the rest of my life, I will never forget how they sounded, "MJ's gone." We sobbed, Willie and I, we both lost it, our son was gone, how was that ever possible?

We took a few more photos, and then I asked if my mom wanted to hold him, she kissed him goodbye and gave him back to me, and I gave him to my sister to kiss goodbye. The nurse had offered for us to give him a bath, or spend as much time with him as we wanted to. At first I thought it was something that I would want to do, but then we decided against it. MJ's body was getting cold, and I didn't want to remember him like that. I wanted to remember holding him alive, and feeling his warmth. I remember thinking it was odd that the nurse gave us warm blankets, and then I realized why she did. Looking back, I am glad that we did not bathe him. He had so many tubes coming out of him, and we would have had to work around them, and his body would have gotten colder, I don't really remember any of that, though. I simply remember my perfect little boy, wrapped in warmth, and how he fit so perfect in my arms.

We handed him over to the nurse and said our final goodbyes. Everything after is a blur, we signed some papers, authorized an autopsey, and within an hour we were on our way out. I remember feeling incredibly numb and almost as if I was having an out of body experience as we were leaving the hospital. My son was gone, and now I had to figure out how to live without him.

Wednesday, August 25, 2010

Welcome to Holland

I have come across this a few times in the past, and each time I read it, I find it more and more appropriate for where I am at today. Our new life in "Holland" is never what we thought it would be. We always and only wanted "Italy". But as we come up to our first year without MJ, we are slowly starting to enjoy "Holland" and see the pure beauty in what our life is today. We have an absolutely amazing little boy named Will that we are in awe of each and every day. We have an equally amazing little boy in Heaven waiting for us. So many people love and remember him each and every day. My biggest fear after we lost MJ was that he was going to be forgotten. Now, almost a year after he died in my arms, I know he will never be forgotten. Not by our family, not our friends, and not by the wonderful amazing people who took care of him in the hospital when we could not be there.

While I still ache for "Italy", I can appreciate and love "Holland" . . . .

Welcome To Holland
Emily Perl Kingsley

I am often asked to describe the experience of losing a child- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to
Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "
Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the
flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the
rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Monday, August 23, 2010

This Sunday

This Sunday marks our first year without MJ. The days and weeks leading up to it have been pretty hard, a lot harder then I thought. I am actually thankful that the past few weeks have been so incredibly busy for me at work, that I haven't really had the time to think of anything but work for awhile. But I know that a crash is coming because I have been putting off my feelings for so long.

We are putting together a Butterflies and Balloons Rememeberance Release on Sunday to help us remember each and every day that MJ was here with us on the Earth. We are using this event as a fundraiser for MJ's Memories, our Project Sweet Peas local project that donates care packages to families with a baby in the NICU. We will release a Butterfly and Balloon on your behalf, if you cannot attend, with your personal message written on the balloon. We will take a photo and send it to you after the release. I know that it will be incredibly beautiful, and incredibly bittersweet for us.

Please let me know if you are interested in getting a butterfly and balloon for your angel.


Wednesday, August 4, 2010

Butterflies and Balloons Remembrance Release

August 29, 2010 will mark the one year anniversary that MJ became an angel. In his memory we are hosting a fundraiser for MJ's Memories by releasing butterflies and balloons for the Butterflies and Balloons Rememberance Release. All proceeds will be used for funding MJ's Memories, which is a local project of Project Sweet Peas. Our mission is to provide a little touch of comfort for parents of children in the intensive care unites. This project was started by a group of parents who have one thing in common: we have seen how fragile a child's life can be. Through our experience we came together, now it is our turn to give back. We donate care packages to families at Children's Mercy Hospital in Kansas City, MO and Stormont Vail Hospital in Topeka, KS. We will also be donating 35 memory boxes to Children's Mercy Hospital for MJ's Angel Day.

For your $10 donation, a butterfly and balloon will be released in honor or memory of your child. You personal message will be written on the balloon, and a photograph will be taken and emailed to you. 

Please consider helping us honor MJ and all of our angels who are gone too soon! Visit for more information or to purchase your Butterfly and Balloon!

Wednesday, July 28, 2010

Three Years Ago

I married the greatest man I will ever know. He has been my rock and my strength and I don't know how I could survive without him. I am so incredibly blessed to have such an amazing husband. No matter where I go or what I do, he is always beside me every step of the way. We have had many, many great times together. And we have also endured the worst possible thing to ever happen to someone when almost one year ago our son died.

I look at this picture above and I see two people madly in love with so much hope in their eyes and so much to look forward to. And I don't even know them anymore. We have been through so much we know the depths of heartache and loss, we've been through the worse and it's pretty hard to see the sunlight right now. We are jaded. Our hearts are broken, and the scar will always remain.

One year ago we still had that hope. One year ago both of our sons' were alive and MJ was having a great day. He had been transferred to Children's Mercy Hospital the day before and I was released from KU Med that day. We rushed right over to see MJ and were so happy when we realized that we could bring Will in to see his brother each and every day. This is one of the few complete family photos that we will ever have.


We have no clue what was ahead, and we were so happy to have our family of four together. You can see that MJ was starting to swell from all of the fluid that he was receiving via iv. Both Will and MJ were exactly six pounds each when they were born, but here is looks like MJ was an eight pound baby. He probably did weigh eight pounds, but he never should have that soon.

Things have been pretty hard for me as of late. I didn't think that they would. I thought the week before their birthday, and their birthday would be hard. But the feelings and emotions that I am having now are so much more intense and harder then I thought that they would be. I feel like I am in limbo and waiting for this crash to happen on August 29 (MJ's Angel Day), like I can't quite be happy, but I shouldn't be an emotional wreck just yet. But I am. I am an emotional wreck, and I don't know what I need or what I want. For example, last week a close friend was talking about how she knew SO many people with twins. And while she included me in that group, it felt so wrong and it hurt so much. You see, all of these twins she was talking about were living breathing, healthy babies. I will never know what its like to juggle two babies at the same time. I will never see my twins side by side. I will never get to laugh about their identical schedules or talk about the crazy bond that my twins have. The only time I held them together was the day that MJ died. I want to be included as a mother of twins, but I don't want to hear about twins. My emotions are so all over the place it's not even funny.

I have another friend that has a 16 month daughter and is due to give birth again in September. I was talking to her the other day and she told me how worried she is about how she will manage two babies. Um, hello? I would kill someone to have two babies. How do I even respond to that?

Sometimes I just feel like the people that I think should be sensitive and should know the right things to say or do are the ones that hurt the most. All I want is for MJ never to be forgotten and he was forgotten by people that have lost their babies and I never expected them to. And that hurts so very bad.

The people that I expect to forget MJ or the people that I expect to say hurtful things, don't necessarily hurt the worst. It's the unexpected that really just cuts me to the core.

And this time, these 35 days are so much harder then I ever thought they would be. I need some compassion, I need some sympathy, and I really just need someone to say, "What your feeling is okay, and normal, and it really, really sucks, and no matter what I love you." I need to know I am not crazy.

Monday, July 26, 2010


This time last year MJ was alive and fighting for his life. He was having an okay day and they were planning on weaning him for the oscillator, or 'jet vent'. This type of ventilator would shake his entire body as it pumped 400 breaths of oxygen in him each minute. I will never forget the sound of that machine or the way his body shook so hard. It was this evening one year ago that MJ started to turn for the worse. He was KU Medical Center and the doctors weren't sure if he would make it through the night. I remember posting on facebook for prayers and thinking I was being dramatic because there was no way that MJ would not live. The next morning the doctors came in and told us that he needed to be transferred to Children's Mercy Hospital so he would be able to go on ECMO if he needed to.

Today I am angry. I am angry that I have not been able to watch MJ grow up for the past year. I am angry that I was not able to celebrate his first birthday with him. I am so, so sad. I don't know how I am going to endure the next 34 days. It's a crazy feeling and an indescribable thought, knowing that one year ago my son was alive and fighting for his life, and this year today I have to look back and know what was ahead.

I am grumpy and irritable, and I sure as hell don't want to be at work. But this is the busiest time of the year for us (I am in college recruitment) and so I have to endure. I have to live and I have to move on. I don't want to and sometimes I don't know how I am going to.

I don't have a picture of MJ from when he was two days old. When he took a turn for the worse, he was moved into an isolation room in hopes that the noise and lights from the other babies around him would help, so the room was always as dark as it could be and we could only whisper when we were with him. I wish I would have snuck one anyway, I wish that I had a picture of him from each and every day that he was alive.

Sunday, July 25, 2010

Happy Birthday to both of My Boys!

One year ago today I gave birth to two of the most precious things I have ever laid eyes one. William Glen Skaggs IV was born at 3:26 am and Michael Joseph Skaggs was born at 3:27 am.  I never thought I would have to celebrate their birthday without MJ, but I do and I am. We are having a small party for Will, and keepings things very light and easy. I feel as though at the moment I am seperating my emotions from the day. I can be and I am happy to see Will turn one. But my heart lies with MJ and the devastation of losing him.

I miss MJ so much, and I want him back so bad. Yesterday we spent the day making items for our gift bags for MJ's Memories, our project through Project Sweet Peas that we deliver care packages to families that have a baby in the NICU. We made baby eye masks, isolette name plaques, baby girl hair bows, and memory boxes for families that lose their babies. My mom said it best when she said that we should have been playing with two baby boys yesterday, but since we can't, we can do these things in MJ's name, and keep his memory and life alive. (I'll post some pictures later.)

Today is not has hard as I thought it would be, at least not now. I don't know what the party or tonight will bring.

I will never understand the path that God has chosen for us this side of Heaven, but the one thing that I can do is allow Him to lead us in this crazy thing called grief.

To my sweet, sweet Will: You have brought an incredible amount of smiles into our life the past year, and I don't know where I would be without you. Thank you for being such an incredible son and for brightening so many dark days. I love and appreciate you more then you will ever know.

To my angel MJ: Thank you for blessing us with your life for 35 precious days. There is nothing I want more in life then to be able to watch you grow up. You have changed my entire life and way of being. You have made me a better person and a better mother to your twin brother. I am better for knowing you. I love you with everything that I have.

Friday, July 23, 2010

Another Nightmare Coming True

Today I realized why this past week has been so incredibly hard for me. When I was pregnant and I would think of the possibility that MJ would not make it, I would always wonder I could ever possibly celebrate Will's birthday without MJ. At the time, that was the worst thing for me, probably because I never actually thought that MJ would not survive. I always thought he would be a survivor. I always thought that my son would beat the odds and come home with us. I always imagined two high chairs and two babies covered in birthday cake. When I was pregnant my biggest nightmare was celebrating my twins' birthday with only one of them.

And now its coming true this weekend. 

I keep telling myself to be happy and that we have to make Sunday all about Will. July 25 is Will's Day and August 29 (the day we lost MJ) is MJ's Day. But it is just so hard. Everyone always says that the anticipation is always harder then the actual day, and I really hope that it is the case on Sunday. I hope that I can smile and laugh and celebrate the life that God has allowed me watch grow up. I know that my heart will be heavy and MJ will be on my mind. But I really hope that I can give happiness to the son that is in my arms.

Thursday, July 22, 2010

July 25

Three days from now we will have a first birthday party for Will. Three days from now, one year ago I gave birth to two baby boys, Will and MJ. But we only celebrate one of their birthdays. July 25 of each and every year has to be a celebration, and it has to be about Will and only Will. We have to celebrate the life that God has allowed us to see each and every day. And that really just breaks my hearts a little.

I don't really want to celebrate just one of my son's lives. But that is how is has to be. We cannot be sad and cry (although I know I will want to, and I just might) on their birthday. That day has to always be about Will.

But I don't know if I can do it. The days leading up to this Sunday are getting harder, I find myself wanting to cry a little more each day. The tears and the sobs are getting stronger. I try not to really think about it, but it almost seems as though my body knows how sad my heart is, even though my mind tries to veer away from the heartache. The littlest things bring the tears these days. The grief is just all coming back.

It's just not fair. There is really no other way to put it, but it's simply not fair. It's hard, truly hard to know that there is still so much life to live without MJ. Sometimes the thought of it is just so incredibly overwhelming. To know that each and every day is yet another day I have to live without my son. But then again, each and every day is one day closer to when I can see him again.

This weekend is going to be hard, the 35 days after that are going to be hard, knowing that at that time last year, MJ was alive and fighting, and enduring so incredibly much.

Sometimes I just want to shout out to people I AM A MOTHER OF TWINS, MY SON LIVED, HE LIVED, AND HE FOUGHT SO HARD TO LIVE! But some people don't care, and that hurts so much.

For some reason this morning I was think a lot about two family members who choose not to acknowledge MJ. They didn't come to his funeral, they didn't call, and it really just feels like they don't care. And because of what they choose, they will never know Will either. That is a decision that Willie and I made, and I am very glad that we did. But it hurts, it hurts to know that they think of us as a family of three, that they think we only have one son. We are a family of four, and we have two sons. The rest of our lives, no matter how many children we have, MJ will always be included. Any family or friends that choose not to acknowledge both of our sons just can't be apart of our life. Its very plain and simple to us. But it still hurts. But that is our life, forever we will miss MJ, but he will forever be apart of our life.

Sunday, July 18, 2010

A Time to Grieve

Ecclesiates 3:1, 4
To everything there is a season, and a time to every purpose under the Heaven . .  a time to weep and a time to laugh; a time to mourn and a time to dance

Recently I came aross the book, "When the Will of God is a Bitter Cup" by Dr. Don Woodard. (Thank you Desiree for recommending it!) I put it down a few weeks ago and decided this morning to pick it back up again. I think that I get the most of out a book the second time I read it, especially one on grief.

These past 11 months or so of my life have been filled with weeping and mourning and grieving. I finally feel as thought I am ready to laugh and ready to dance. Ready to enjoy life again. And it's okay to be happy. It's okay to smile and laugh and dance again. And I have to be able to do those things. I cannot miss out on watching Will grow up.

But sometimes I struggle with this. I struggle to know when the time is right to laugh and when the time is right to grieve. Somedays I can be okay and know that it really is okay to be happy. And then the sadness hits me out of nowhere, like when we were getting Will's one year pictures taken two days ago. It hit me when we were reviewing the photos and I thought, wow there should be two this cute. Or today when we were at the grocery store and Will was being fussy so I was carrying him on hip. We ran to the next aisle and got an economy size thing of toilet paper. I had Will on one hip and the toilet paper on the other hip, and I wondered what it would be like to have two babies on my hip. So many little things like that just hit me and then the waves of grief surround me.

So when is the time right to mourn? Or dance? Or weep? Or laugh? I don't think I will ever stop grieving. But I do think that the moments of weeping will be fewer and further in between, and  the moments of laughter and dancing will be longer and my happiness will come back.

Saturday, July 17, 2010

Grief Changes You

Today we went to Children's Mercy Hospital to attend a Living with Grief Support Group meeting. It was so nice to be there, especially so close to the boys' birthday. It really is an incredible feeling to be with people who just 'get it'. To be able to talk about MJ and hear their children's story's, and then talk about the day to day struggles that have rocked my world the past year. It's a feeling that I can't really describe, being in a room ful of people that have had to say goodbye to their children incredibly too soon.

Maybe it's being back at the hospital that MJ lived and died, or maybe its going through those emotions and thoughts all over again, or maybe it's just that we are so close to their first birthday, but the whole day today has just been a little harder. The tears come just that much easier and the motivation to do what needs to be done is entirely gone. Today is a down day in this rollercoaster of grief. I suspect there are going to be many down days in the next few weeks as we go through our sons' birthdays and MJ's death day.

Maybe I am too hard on myself and should just live in the moment. But I want to be in a place in my grief where I will feel okay. Not quite good yet, but okay is what I am looking for. Most days are okay, but those days are coming fewer and further between.

It's strange, really. The first months after losing MJ I had no yearnings for feelings other then devastation. And then I started having good days, and the guilt swept in: guild that I could actually live and be happy without my son. And then I started having more good days then bad, and really wanted those good days. The past few days have been pretty hard, and it seems like they will get harder before they will get better. Grief really is a rollercoaster of ups and downs and everything in between.

And it changed me, it changed everything I knew and everything I thought I knew. I realized today how comforting it is to be around people who have walked in your shoes, and know what it feels like to lose a child. I haven't felt that comfortable in a room full of people in over a year. Sometimes I feel like I am more comfortable in tragedy then in joy. But don't misunderstand me, there was joy today, we laughed and we remembered our babies, and it was a comforting few hours. We all understood what its like to live your live with a broken heart.

While we were there we donated two memory boxes, one girl and one boy. We are planning on donating 35 at the end of August, one for each day that we were blessed with MJ's life. We wanted to bring two today to make sure that everything in them was okay to include. And everyone there just loved them. It was a good feeling, knowing that we can offer a little bit of comfort during such an incredibly hard time. Here are a few pictures of the memory boxes. They include in them a baby blanket, broken heart pendant with a poem, a wisp of hair bag with a poem, a disposable camera in case the parents don't have one, a baby cap, a stuffed animal, and a picture frame with a little baby angel on it.

Monday, July 12, 2010


Only a couple people asked questions about me, so here goes my answers.

Has your loss brought you closer to your family and/or friends? So many are mixed on this so I was just wondering.
There are so many answers to this question! For myself and my husband, it has without a doubt brought us closer together. Sometimes I look at him and think about that song that has that line in it that goes, "And I thought I loved you then." Sure, we've had our fights and arguments, but everything that we have been through has brought us closer to each other then I ever imagined we could.

As far as family and friends, it's really a toss up. Overall, I have lost a few family members and friends along the way. I simply choose to end all contact with someone that refuses to acknowledge MJ. It's pretty sad that it's come to that. I don't understand how family, close family could pretend that MJ never existed. These family members (who shall remain nameless) didn't call and didn't come to his funeral, among so many other things that have happened since we lost MJ. The same goes with friends, I haven't even spoken to two of my bridesmaids since we lost MJ. One called and one sent a card, but I haven't heard anything from them since. And like I said in my previous post, I am in no way not taking any blame - friendship is a two way street, but at the same time, they should have been there when I needed them to - and they weren't.

The months just after MJ brought me further and further away from the rest of my family (except for my husband). I pushed everyone away and I just couldn't cope with how the world goes on, while I was standing still. It caused some relationships to suffer, because so many people just wanted to help me, but I didn't want their help, all I wanted was to whole up and remove myself from the world. Just in the last few months, things have gotten so much better. I am getting better emotionally, and I am working things out with those people that I pushed away. It's taken almost a year, and while I'm not quite there yet, someday I will be. And the people who still support me and love are the only people I want to be around anyway.

Do you work outside the home? If so, what do you do? Also, you are so great and I'm glad we have "met" even on such sad circumstances. Thanks for doing so much to raise awareness for CDH AND helping NICU parents!
I do :) I work for Friends University in Topeka, KS. I recruit for the associate, bachelors, and master's programs at our campus. I love my job and what I do. I think that education is a very important key to success and I am very glad that I can play a part in giving that to some people. I am also currently working on my master's degree in leadership and management. I have about a year and a half left in my program, which I am very excited about. It feels good to be back in the classroom, I think I enjoy it more now then I did in my undergrad work.

Since there weren't a whole lot of questions, here is a little bit more about me:
I grew up just outside of Chicago, IL, in a suburb called Mundelein. I played softball my whole life, and ended up getting a scholarship to Benedictine College, in Atchison, KS to play there. When I went there I thought it would be for four year, and then I would move back to Chicago and start my career. I never calculated falling in love and finding a husband! Willie and I met when I was a sophomore and he was a senior. We each took a class called Country and Social Line Dancing (I took it for fun, and he took it as a graduation requirement for his Physical Education degree). We got paired up as dance partners, and the rest as they say is history! We then moved to Kansas City, MO and lived there for a year before moving to Topeka and starting our family. We have two cats, Cammie and Charlie, and one dog, Lola. I swear each week we change our minds about moving or staying in Kansas! Part of us wants to move and get the heck out of here, and the other part wants to stay here and build our life. We just can't decide! I know that somehow, someday, it will all work out and wherever we go and whatever we do, it was meant to be. I always like to say, "If you want to see God laugh, tell him your plans." Life is so unexpected!