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.

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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.

Emotions

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.

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.

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.

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.

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.

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.

Answers

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!

Clarity

Last night I couldn't sleep and for some reason or another, I had a yearning to go through all of MJ's things. So at midnight last night, I looked at some pictures and touched his things and I read every card, cried and sobbed as I looked through each item of his and when I was done, I had a feeling of overwhelming comfort. It's ironic, really, when you think about it. Going through his things, reading the cards that people sent us when we lost him, I thought it would make my longing for him greater, but instead it brought me a great sense of peace and clarity. I know that MJ is in Heaven, I know that he has a greater purpose on the Earth, and that purpose is not yet complete, nor do I know what it is an its entirety. I know that part of his purpose was for us to find the amazing friends, who have become family to us, and give other families the touch of comfort they need through MJ's Memories. But I feel as though his greatest purpose is still yet to come. What it is, I do not know yet, but I truly feel as though my son will have part in something amazing and wonderful. And maybe I will never know that purpose is, but as his mother I feel this amazing connection with him still. It's a bond that can never be broken, that of a mother and child, and even though he is gone, I can still feel it.

So as I was going through all of his things, part of me wishes that we would have waited to put them away after we lost him. Part of me wishes that we would have simply left everything the way it was, and just shut the door to his room and grieve, I mean really truly grieve before we put away his things. But for a multitude of reasons, namely being this little man below, we couldn't.

We had to go through everything and pack it all up just 10 days after we lost him. We had Will that was just a newborn himself and although we were amazingly devastated, we had to be parents and give Will every ounce of energy we had. And we did. We faked it, we smiled through out tears, and we sobbed at night and we tried to give him as happy a babyhood as we could have.

Just now, 10 and half months after we lost MJ, do I feel as though I have some clarity on his death and his life. It's the clarity that makes me able to smile when I remember the memories that we so cherish. The clarity that enables me to believe that something beautiful has come out of something tragic. For so long we have been trying to get pregnant again. I so wanted to be able to believe that although we have been through the worst thing anyone could ever imagine, something beautiful can happen in its aftermath. For so long I wanted that beautiful thing to be a peaceful, beautiful pregnancy ending with a healthy baby. And while I still long to be pregnant again and be able to achieve a new hope that only a parent of an angel can have, I know that something beautiful has already happened.

It's the friendships that I have made and the support that I am able to give to other families. If MJ would have survived, we more then likely never would have joined Project Sweet Peas and we never would have met the amazing women that I am lucky to call my friends. In the aftermath of losing MJ and being completely absorbed with my grief, I lost a lot of friends and family. I haven't even spoken with two of my bridesmaids since we lost MJ. (Kind of pathetic, huh?) I realize friendship is a two way street, but at the same time, a phone call would have been nice when I was so completely devastated I could hardly do anything. The girls from PSP and a few others (you know who you are!) have helped me pick up the pieces of my broken life. While I will never feel completely whole again, I am starting to feel not so broken. I know that I can pick up the phone to anyone of them, at anytime, and it feels as though I have known them my entire life. And you wouldn't believe that I have only met two of them - and just a few weeks ago!

It's starting to feel as though the cloud is starting to lift and I can live again. I am so thankful for that. Tomorrow I start my second round of the fertility drug chlomid. The first round simply didn't work so we are doubling my dosage. I hope this works! While I thought I was ready for another pregnancy a long time ago, I am thankful for unanswered prayers. I finally have the clarity to truly appreciate what it will mean to be pregnant again, and I know that I have the support of some truly amazing people who I am honored to call my friends.

Delivering and Remembering

So Friday we drove the little over an hour drive to Children's Mercy Hospital and delivered 20 more bags in MJ's memory. I thought this trip would be an easy one, stop in and say hi to the Child Life Specialist, and then go visit my sister for the afternoon. And overall, it was, but just as we got off of the highway, we pulled right behind a Children's Mercy Ambulance. And all those thoughts of that day that MJ got transferred came through my head.

When I was pregnant, we had two options to choose from to deliver. The first option was to deliver at KU Med Hospital, and hope for the best with MJ and that he would not need ECMO, or the heart and lung bypass machine to keep him alive. Every test that we could have done in utero, we did. And every test gave us a very optimistic outcome. His lung size looked good, he was a good size (weight), and most importantly, his liver was not in his chest cavity. Almost 70-80% of babies with CDH survive if their liver is 'down'.

The second option was to deliver at a nearby hospital and have MJ immediately transferred to Children's Mercy.

We chose to deliver at KU Med for multiple reasons: we thought that a transfer would be a lot on his little body, we did not want our boys to be separated, we did not want to be separated from each other, and we truly thought that MJ would not need ECMO.

The day after I delivered Will and MJ, the doctors came to us and said the were not sure if MJ was going to make it through the night. We cried, we prayed, and we sat by his side for as long as we could. And he made it through the night. We were so optimistic and so happy that he made it. Then the doctors came to us and said they thought that he would need to be transferred and they were making arrangements to do so. At that time, that was our worst fear. It was just about the most awful thing in the entire world to watch him be transferred. Three nurses and two paramedics came to KU Med to transfer MJ. He was hooked up to countless machines and each machine had to be unhooked and then hooked up to the transfer machines. It took about an hour and a half to complete everything. I stood and watched and sobbed the entire time. They then let us reach in and touch him before they whisked him away to the waiting ambulance. As soon as they left, Willie, my dad, and his dad all left to go be with MJ. My mom, and his mom stayed with Will and I. We were completely devastated. Although the hospital was only about ten minutes away, it felt as though we were separated by miles. The hospital offered to release Will and I one day early, but Will was starting to come down with some jaundice, so we decided that MJ was in the best possible hands that he could be in, with Willie, my dad, and his dad with him, and Will needed to be in the best place possible for him, if he needed that same level of care.  The next day we were released, and Will's jaundice was much better.

Seeing that ambulance brought back all those same emotions of devastation and heartache. I thought of that child's parents and how they must be feeling, and how I hoped and prayed that the child in that ambulance was safe and would come home. It's crazy how seeing one thing can bring back so many emotions and literally take me back to that day. In some ways its comforting. When we lost MJ I was so incredibly scared that I would forget. And while some of the emotions that we felt at that time have faded on a daily basis, the littlest things bring it all back. The sadness, the heartache, but most of all, the joy and hope that we had in our hearts. A few weeks ago Will was screaming and crying at my sister's house when we were visiting them. Her boyfriend commented on how we all knew that Will's lungs were healthy. It felt like a stab in my heart because if MJ's lungs were healthy, we would have two screaming babies at that moment. And so many emotions came back. So the moments like that, while I cry and my heartaches, I long for them. Because then I know, I just know that my little boy is always with me and he lives forever in my heart.

So, after that looong tangent, here are some pictures from our delivery of bags. Will had a great time being there, almost like he remembers that place and he truly enjoys when we go. Maybe he remembers that's where his brother was and that's why he likes it so much.

On a side note, my post about Questions is still open! So if there is something that you want to ask me . . . Go Ahead!

145

Gift bags that is. As of today at about 2 pm, we will have delivered 145 gift bags in MJ's name through MJ's Memories and Project Sweet Peas.  In just nine short months. I feel very blessed that we have had so much support and commitment from family and friends. It is because of all of the support that we have been able to donate these gift bags and will continue to donate these gift bags. We have delivered bags to Stormont Vail Hospital in Topeka, KS, Children's Mercy Hospital in Kansas City, MO (where MJ lived and died), and we have sent five gift bags via mail to various people through our Gift Bag Request. Two days ago I sent out two bags to a family that had twin boys. And that was hard, knowing that they will more then likely bring their two boys home with them. But I am so glad knowing that I can do this in MJ's name, and keep his memory and his spirit alive.

This afternoon we head back to Children's Mercy to deliver 20 more bags. It's always hard going back there. I have feelings of dread and anxiety as we walk back into the hospital where my son died. I am just glad that we don't have to go up to the NICU. We deliver the bags to volunteer services, and it makes it just a little easier. I hope that I never have to walk into another NICU again.

So thank you to everyone who has donated, voted for us in the Pepsi Refresh Project, or simply gave us words of encouragement. When we started this project in October, just two and a half short months after we lost MJ, I never thought we would bring it to the scale that we have it today. I mean, I wanted to. I wanted to do something truly amazing and honor my son at the same time. And I think that we have, and then some.

Our next donation is planned for the end of August, in honor of the day that MJ died: August 29. On that day we are hosting a Butterfly and Balloon Rememberence Release in honor of him and all of the angel babies that have gone too soon. A Butterfly and Balloon (with your personal message) will be released that day on behalf of you (if you cannot come to the actual event) for a $10 donation to MJ's Memories. I am really excited about the Butterfly and Balloon Release, I think that it will be an amazing, yet very hard day, at the same time. Hard because it will mark one year without my son. And amazing because I can look back and think about how awesome his life was and everything that we have done in his memory.