Wednesday, March 31, 2010

Butterfly Mommies and a day for Turquoise

Never before did I think I would be a blogger. But after the death of MJ, I stumbled onto the blogging world and have become become not only a fan, but a blogger myself. There are a lot of wonderful resources through blogging and the babyloss blogging world has become a source of great support for me. Butterfly Mommies is one of those outlets and the women their have created a network of mommies with babies in heaven. They are about to start a radio show and have asked the babyloss mommas to help them start out with their first show by answering the following question:

What forms of support helped you the most during your time of loss and even now? How would you recommend other people support grieving mothers? (As we know, many times people who love us often don't know what to say or how to act)

There are many forms of support that have helped me throughout my journey without my son. After MJ's death I became more and more involved in the congential diaphragmatic hernia (CDH) world and attempted to learn all I could about the horrible birth defect that took my son. I knew that MJ would be born with CDH when I was 21 weeks pregnant. I knew the odds: only 50% of these babies survive. I knew that he would have a hell of a fight. But I also knew that he would make it. I refused to believe anything but, and simply put my faith in God that MJ's story would be on of survival. So I never truly fought to understand what CDH was, and I never thought I would not take my son home with me. Since he died I have wanted nothing more then to figure everything out about CDH, so that I truly understand why and how my son died. Through my yearning for knowledge I have met wonderful, lifelong friends. I have met other mothers that have lost their sons or daughters. I have stepped up and poured my heart out to complete strangers to raise awareness. I have cried, I have laughed, and most of all I have missed my son. Meeting and talking with other parents that have lost their babies helps me understand that I am not alone, and that my son can and will be part of my everyday life. The support that I have received and given is life changing, and in the realm of devastation, I have found beauty in the way that my life has changed in the last seven months since my son died in my arms.

Supporting a grieving mother is very hard, yet very easy at the same time, I feel. The one and only thing that I have left of my son is his memory. I want and I need to be in control of that. His pictures, his name, his things, and so many other things that I have of him, I need to be in control of. I want to be the one to speak his name, so ask me about him. I want to tell the world that my son lived and that he fought hard, so hard for his life, so let me. I want to raise awareness of the awful birth defect that took his precious life, so help me do so. But let me do it on my terms, and the way that I want to. I want to be the one that distributes his pictures, so please don't use them without my permission. Basically, please respect me enough to 'parent' my son's memory and his things. After all, you wouldn't take my son and do what you please with him and his things if he were living? Would you?

I also want to thank the countless people today that have worn turquoise, posted something on their facebook page, remembered MJ, or simply talked about CDH today. I can't even explain to you what that means to me. The single thing that I am most scared about in this world is that MJ will be forgotten. It is my mission in life to ensure that he never will be. He is a part of my daily life, just as much as his surviving twin, Will is. I speak his name daily. I think about him constantly. I look at his pictures all the time. And I thank God every single day for the 35 days we spent with him. So thank you for helping me make this a Day for Turquoise

Tuesday, March 30, 2010

March 31 is Congenital Diaphragmatic Hernia Awareness Day!

Please help support awareness of the horrible birth defect that stole my son MJ from my life by wearing turquoise tomorrow. And if some asks why, please tell them what CDH is.

Congenital Diaphragmatic Hernia (CDH) occurs in about one in every 2,500 live births. Absence of the diaphragm may occur on the left, right or both sides, but the absence on the left side is most common. CDH occurs when the diaphragm does not fully form, allowing the stomach oragans into the chest cavity, which severely hinders lung and heart development. There is a wide discrepancy between the “visible” mortality from congenital diaphragmatic hernia reported from children's centers, which treat only those infants who survive gestation, birth, resuscitation, transport and often major surgery, and the true mortality for congenital diaphragmatic hernia, based on all prenatally diagnosed cases, which has been called the “hidden mortality” of Congenital Diaphragmatic Hernia (CDH).

Monday, March 29, 2010

A CDH Walk of Hope

We just got back in from our short trip to Nevada to visit my in-laws and for the CDH Walk of Hope. Overall we had a great trip. It was so nice to see my husband's family, as even though we are far apart, we are very close. My mom made the trip out as well. We packed a lot of things into the four day trip, with the most important being the CDH Walk of Hope on Saturday morning.

Sporting our Turquoise for the Awareness Walk

It was a little cold, but nothing that we couldn't handle! I was surprised as how emotional it was, but it seems as though I always am. I always seem to think that I am stronger then I actually am, but when we got there the tears just seemed to flow. I am glad that we stopped to get me some sunglasses, so most people couldn't tell! We had a great turnout, especially for it being the first annual walk. Hopefully this means that next year should only get bigger! There were three families overall affected by CDH. Obviously, we are affected by CDH, as we lost MJ to it. We also have friends in that area that lost their son to CDH just one year ago. And there was even a CDH survivor and her family that came! And ironically, her birthday is March 31st - CDH Awareness Day! I believe she was 13 years old, and her mom saw all of MJ's pictures and said they are just identical to the pictures of her daughter's. 

We walked one mile to "Honor our Survivors and Remember our Angels"

The whole Skaggs Family, with MJ in our hearts

Balloon Release at end of the Walk

Even Will released a balloon!

Right now I don't have a whole lot to say about the walk and the weekend. It was bittersweet, and at time, heart wrenching, knowing that we should have MJ with us. I had plenty of moments where I was blinking back tears or just had to walk away and get some air. But at the same time, I also plenty of smiles and laughs. We were coming back today and were boarding the plane, and I had Will in my arms and Willie was pushing the stroller. We gave the stewardess our boarding passes and she did a double take and said, "Two babies?" She thought that I had a baby in my arms, and Willie had a baby in the stroller. And I had to say, "No, just one." And that hurt. A lot. I wanted to say, There should be two babies. But I had to just walk away, and I felt that awful feeling when my stomach just drops and my throat closed up. But then again, that is the story of my life right now. 

Thursday, March 25, 2010

I Never Wanted Any of This

Exactly eight months ago today I was lying in my hospital bed elated at the birth of my twin sons. Will was in my arms and MJ was stable and doing better then expected in the NICU. I was attempting to eat so I could build up my strength after 26 hours of labor and a c-section. I was talking with the nurses and trying to get to see MJ for the first time. It wouldn't be until almost 10 pm that evening that I would see MJ. I will never forget the moment that I laid my eyes on him for the very first time. Tears flew from my face as I tried to comprehend what my son was facing. I knew before he was born that he would have CDH. We had a tour of the NICU and saw other babies hooked up to the same machines that MJ was on. But still, it doesn't truly hit you until you see your own son fighting for his life. He was on an oscillating ventilator, and for those of you who don't know, the ventilator violently shook his entire body as it filled his lungs with air. We could only touch his leg and talk to him. No stroking or kisses or holding his hand. All we could do was touch his leg and pray.

 The First Moment I saw MJ

Those days play through my mind all the time. I wonder if there was something more I could have done to save him. I wonder if I would have talked to him more, would he have wanted to fight more? If we would have chosen a different hospital, would it have made a difference? If I would have been able to hold on to the boys just a little while longer, would his lungs have been just a bit bigger? Could my body have been better for him in the eighth and nineth week when the diaphragm forms, would it have formed correctly? I remember I spotted during that week. I remember I thought maybe I was having a miscarriage. Now I know. I know that that is exactly when his diaphragm did not form correctly and his fate was formed. Could I have done anything, anything differently? These thoughts haunt me. Each and everyday I think about these things. If I could go back and choose things differently would MJ still be here? Would he be celebrating his eight month birthday with us? I don't know, maybe it would play out the same no matter what we did. I just can't help but think maybe if wouldn't have.

The end of the month is always very hard for me. Especially the 25th and the 29th day of each month. The 25th is a monthly birthday for my boys. The 29th is another month that I have to live without MJ. Lately I have been feeling a lot better. I have felt as if I am coming out of the fog that I was in the first six months after we lost MJ. And last night I kind of lost it again. I don't think I even realized until this morning. I was super stressed out and I took a shower and just fell apart in the shower. I just wanted to scream as loud as I could that I NEVER ASKED FOR THIS, I JUST WANT MY BABY BACK, AND I DON'T WANT ANY OF THIS. I just want MJ. I never wanted memories of my son. I only wanted my son. I still want my son. I want to share a few lines from a song that kept me going when my Dad was battling cancer (he survived, thank God).

If you're going through hell keep on going 
Don't slow down if you're scared don't show it
You might get out before the devil even knows you're there

I've been deep down in that darkness
I've been down to my last match
Felt a hundred different demons breathing fire down my back
And I knew that if I stumbled I'd fall right into the trap
That they were laying

But the good news is there's angels everywhere

That's how I felt last night, deep down in a darkness with demons breathing down my back.  I know my son is an angel, but still, sometimes I can't cope with that fact.

 Tonight we are flying out to Nevada to see my husband's side of the family and to attend the CDH Awareness Walk that my sister in law has coordinated. It will be very hard emotionally for me. I know this. Things like this always are. But it will also be wonderful to see family again. It is hard living so far away from everyone. My sister lives an hour from us, and all of our other family lives in Chicago, New York, and Nevada. My mom if flying out for the walk, too, which will be great to see her as well. I know I will have lots of pictures from the walk to share, too! So I will be away from here for awhile because all I will have is my blackberry. So I wish everyone a wonderful weekend!!

Tuesday, March 23, 2010

March 31, 2010 is Congenital Diaphragmatic Hernia Awareness Day in Topeka, KS

So tonight we went and accepted the proclamation that March 31, 2010 is CDH Awareness Day. We got to the meeting, we said a prayer and the pledge of allegiance, and then the mayor asked us to come up and accept the proclamation. He read the proclamation and then asked us to say a few words. I think I got three words in before I started crying. I had everything written out in my head about what I was going to say and how I was going to say it, and then the tears came and I forgot everything! I felt like I stumbled over all of my words and I have to say I am a little disappointed in myself. I really wanted to be clear and say everything that I wanted to say, but the emotions just got the best of me. In the end, everything that I had to say came from my heart, and if that's the best that I can do, then I am okay with that. I even had some of the council members tearing up at MJ's story.

As always, Will, entertained the crowd trying to grab at the microphone and smiling and cheesing it up for the mayor. I was able to smile and laugh because of him. I am very thankful for both of my boys, and I really couldn't be more proud of each of them.

Me talking and trying to keep Will from grabbing the microphone!

I did get to meet a CDH grandparent in CDH survivor Kinley's mom! And her coworker, Nancy, who made a donation to our Project Sweet Pea! Thank you guys so much!!!

Overall, I am so happy that we were able to do this. It was a great experience and it meant a lot to me to be able to bring some awareness to CDH and talk a little about MJ. There is nothing more in this world that I love doing then talking about my sons! I didn't think it would be as emotional as it was, but things always seem to turn out that way!

Sunday, March 21, 2010

Blog Makeover!! And other stuff

I first have to say a huge THANK YOU to Franchesca over at Small Bird Studio  for doing the amazing make over on my blog. I absolutely love it and I hope that you do, too. I have been wanting to do this for a long time, and was finally able to have her do it. I think it looks amazing and I am so happy to be able to give my blog a new look.

This weekend we have been busy working on stuff for our Project Sweet Peas, as we are gearing up to deliver another 50 care packages in April. We were able to paint and put together 50 name plaques to go in our bags!

Girl Name Plaques
(Notice the Ladybugs?)

Boy Name Plaques

I am so glad that we were able to get all of these done as we have a super busy next couple of weeks! This Tuesday we will be receiving a proclamation from the mayor of Topeka who has declared March 31 as Congenital Diaphragmatic Hernia Awareness Day!! I am so excited about this, and will be posting pictures for sure!! Thursday evening we travel to Nevada for a very special visit to my husband's family. My amazing sister-in-law Shannon has put her heart and soul into organizing a A CDH Walk of Hope for CDH Awareness in memory of my sweet angel MJ. The walk will be held at Lampe Park in Gardnerville, Nevada if anyone lives close and would like to come!

The weekend after that is Easter and we have chosen that as our holiday to ignore this year. Every holiday has been so bittersweet and heart wrenching that we want to have just one this year that we can pretend is not happening. We want to give Will the most amazing childhood that we can give him, and we know that we will not be able to simply ignore holidays in the future, so we want just one before he starts getting bigger. 

The weekend after that we will be having a fundraiser garage sale for our Project Sweet Peas. My parents are coming for the weekend and overall it should be a lot of fun. Then soon after that, we will be delivering more bags!! Busy few weeks, but that's what makes them fun!!

Thanks again Franchesca for the amazing blog design!!!

Friday, March 19, 2010

Bad Weather = Busy Weekend

Anticipating the wretched weather that we are in store for this weekend, I headed to Hobby Lobby this week and spent well over $100 on things to do this weekend for our Project Sweet Pea - MJ's Memories. We started today because I was lucky enough to get out of work early. We still have a lot of work to do in order to get ready for April delivery date goal. I know that we can make, we have just been very busy these last few weeks. So I guess the bad weather kind of works out nice for us, because this way we can get a jump start on the things that we need to get done. 

I tied 100 bows this evening for our girl bags. I thought it would take a lot longer, but it didn't, so that was a nice surprise. We put five bows in each bag with a small thing of surgical lubricant, which gets sticky when it dries. This will allow parents of a NICU baby girl to have a small way of dressing up their new daughter. NICU babies cannot wear clothes for such a long time, and these bows will give parents a small sense of normalcy. What new parent doesn't just love dressing up their new baby?

We still have tons of fabric from the large fleece blankets that have been donated. So I have been cutting the fleece blankets into smaller sizes and sowing them together with a decorative fleece to make an oh-so-cute baby blanket for our bags. I just totally love this ladybug fabric for several reasons. A.) It's just too cute! B.) Every parent of an angel has something that reminds them of their angel. Kate, one of Project Sweet Peas founders, has a daughter Shannon who was also born with CDH. Shannon is an angel, just like MJ. Butterflies remind me of MJ and Ladybugs remind Kate of Shannon. I was lucky enough to receive a sign from heaven from Shannon a few weeks ago. The weather has started to become warm here in Kansas (minus this coming weekend!) and we have been taking Will on walks several times a week. The first time we took him on a walk was kind of hard for me. When I was pregnant I used to daydream all the time on how we would take out the double stroller and go on our walks and just have the best time with our two boys. Taking out the single stroller was a little heartbreaking, as every new thing that we have done with Will has turned out to be. When we got home I was a little more bummed thinking about it, and we came inside and I put Will down on his play gym. Right next to his play gym was a ladybug. Mind you, there is absolutely no reason for a ladybug to be out in the beginning of March, just as the weather turns warm. It was a sign from Heaven, from Shannon. I think she was telling me that she was taking care of my little boy. You see, Shannon has been in Heaven for three years, so she must know the ropes by now! Now every time I see a ladybug I think of Shannon and how I know that she must be taking care of my little boy! 

This week we also received some baby blankets from my mother in law, Cathy. She knits them and they are just beautiful! They are the perfect size for our bags and I know that she makes them with such love. They are such a perfect addition to our bags!!

Wednesday, March 17, 2010

Happy Saint Patrick's Day!

Happy Saint Patrick's Day!! Growing up this was always one of my favorite holidays. I can remember every holiday my family making Irish Soda Bread and celebrating our Irish heritage. Making Irish Soda Bread with my parents and sister's has always been one of my favorite memories. This past weekend my husband and I made Irish Soda Bread at our house with Will. I enjoyed making this new memory with Will, but at the same time, I missed MJ so much. I could see it while we were making the bread: the four of us, with our babies in their high chairs, while we were busy in the kitchen. But one high chair and one baby was missing: MJ. It will always be like that, I suppose. Everything we do, there will always be MJ missing. It doesn't hurt as bad, either that or we are almost used to the pain.

Will has been acting different this week. It almost seems like he misses MJ. We were trying to feed him his dinner on Monday and he just would not stop crying. I was walking around holding him trying to calm him down and we passed by a picture of the four of us by MJ's isolette in the NICU. As soon as he saw it, he stopped crying and grabbed it. He was just looking at it with amazement. The only way he would eat the rest of his dinner was by having that picture in direct eyesite. Then after dinner I sat and cuddled with him on the couch and he reached up at a picture of him and MJ, a big 8 x 10 size photo. He simply put his hand on the picture and just stared, almost like  he was looking at MJ and just missing him. That just made me burst into tears. Out of everything we have been through, the pain and the hurt of us losing MJ, the biggest hurt of all is that Will is going to have to grow up without MJ. That special bond that only twins have, Will no longer has on Earth. It is broken by death.

That same night we were putting Will to bed and our routine consists of bathtime, then I feed Will, while Willie reads to him. Will wanted nothing to do with eating. He was sitting in my lap looking right next to me and laughing. There was nothing right next to me. It seemed as though he was laughing and playing with MJ, like MJ was right there and they were playing together. When Will does thing like that, it makes me think like that special bond isn't broken. And that warms my heart.

Next Tuesday we go to the City Council meeting here in Topeka to accept the proclamation that March 31st is Congential Diaphragmatic Hernia Awareness Day. The meeting starts at 6 pm and we will accept the proclamation soon after. The City Council meeting is held in the Municipal Courtroom Chambers, and we would love to have all who can come! We will have turquouise ribbons to hand out so that all may wear them on March 31st. I am excited and nervous at the same time. We will accept the award and the mayor ususally asks us to say a few words. I have an idea of what to say, but at the same time I am very nervous. Especially nervous that I will tear up. That just seems to happen all the time, and most of the time it doesn't bother me, but at a very public stage like this is going to be, I want to be able to control my composure. One of my good friends is going to come and take photos, which I am very thankful for!

This weekend we plan on getting a ton of stuff done for our gift bags. April is coming before you know it and that is when we would like to make another donation!

Thursday, March 4, 2010

Very Bittersweet Day

Today there are so many great things going on. I have received two emails from people wanting to donate to MJ's Memories! One of them had her son in the NICU at one of the hospitals that we donate bags to for four months before he came home. Her family and friends are organizing a fundraiser to help offset their medical costs and she wants to donate a portion of the proceeds to us! And she would like us to be there to talk about MJ's Memories and set up a donation box and sell our bracelets! Which is amazing. Each and every day I am surprised at the way people react to MJ's Memories. So many people want to help and in the best ways. It truly brings tears to my eyes knowing that all of this is happening because of my little boy.

The other email I received was from a lady who set up a donation drive at her office and would like to meet up with me so that she may donate the items that she collected.

The third amazing thing that happened today is for CDH Awareness! For those of you who don't know, March 31st is CDH Awareness Day. Governors and mayors across the country have proclaimed March 31 as Congenital Diaphragmatic Hernia Awareness Day, and I sent a request in to the mayor of Topeka, KS. (The state of Kansas has already proclaimed it). I heard back from the mayor's office today and he is not only going to sign it, but we will be able to receive it at the City Council meeting at the end of the month! What a great way to get as much awareness out as possible!

So while I am so happy that today brings so many things, my heart stings, I feel that sucker punched feeling in the pit of my stomach, and I hate it. I want to have my son in my arms celebrating these amazing things with me. I imagine that the rest of my life will be filled with these bittersweet moments. I feel them each and every day. With the little things that Will, MJ's twin does. The smiles he gives me, and the things that he learns each and every day. So incredibly bittersweet. I long for time when I was able to truly smile. But I don't think that I will ever be able to do that again. I think that throughout the rest of my life, I will always have the bittersweet smile. I will never stop missing MJ and I will always ache for him to be in my arms.

Tuesday, March 2, 2010

We Have Delivered One More Bag

To the parents of Baby Jaxon, who was born over the weeknd 15 weeks too early. He only weighs 1 lb 15 oz. My husband and I went to college with both of his parents and have known them for quite some time. I will never forget seeing his mom after we lost MJ in the bathoom at a restaurant where we went to college. Tears filled her eyes as she said how sorry she was that we lost MJ. It is moments like those that touch my heart. Knowing that my son has touched other people's lives. I don't think that either of us would have ever thought that she would be needing one of our gift bags. She wasn't even pregnant at the time.

I remember she asked to hold Will for awhile while we ate our dinner. I watched her walk around the restaurant with him in her arms while she whispered in his ear, and tears fell down her face. I can only imagine what she said to him. I hope that she knows how much that meant to me.

Now I am sitting here with tears in my eyes as I pray for her son. So R. and B. please know that our family is thinking of you and your family each and everyday as your son fights for his life. I hope that you receive your gift bag soon and it sends you a little bit of comfort.