Questions

I have seen this being done on a few other blogs and I have just loved to read them, so here is my turn!

I am going to give you all the chance to find out a little more about me. You can ask me questions and I will answer them all in another post. You can ask me what ever you want, it can be about Will or MJ, or my husband, or family, or anything really!

I am looking forward to answering all of your questions, so start asking away!!!!

It's a Blessing and a Curse

While we were at the CDH Summit this past week, many people asked me if my experience with losing one twin made my grief experience different. I don't really know how to answer that. I don't know any other experience in grief. (And God willing - I won't.) The only way to really sum it up is that it's a blessing and a curse.

It's a blessing because in my grief I have this amazing little boy to make me smile and hug and give kisses to. It's a curse because his every movement, his every smile, his every milestone is a reminder of what I am missing.

It's a blessing because I know what MJ would have looked like. I know what MJ's smile would be. It's a curse because I look at Will and see double. I can literally see MJ sitting right next to him and laughing right along with his brother.

It's a blessing because every time that Will achieves something, I know that MJ would have been right there with him. It's a curse because every time that Will achieves something, I know that MJ would have been right there with him.

It's a blessing because I didn't come home with empty arms. It's a curse because I came home with an empty arm.

It's a blessing because even through my tears and my heartache, I have so much. It's a curse because I know what I am missing, each and every day.

I could go on and on. Every day of my life is bittersweet, a blessing and a curse. People look at me and think that I had a singleton, but I didn't and I don't. I am forever a mother of twins, whether anyone chooses to recognize it or not. I carried two babies in my belly, I birthed two babies, I held two babies, I love two babies, and I had to say goodbye to one of them. I know that I am a mother of twins. To honor my twins, I got another tattoo while in Philadelphia - once you get one, they are addicting!

Will is William Glen Skaggs IV and MJ is for MJ :) I just love it so much, and I whenever I look down at it, I remember my twins.

A tragic, sometimes almost magic, beautiful week

So this past week Willie, Will, and I packed up the car and headed East. We had a great week. Many days were filled with memories that I will always cherish, and many days were filled with tears as I remembered the little boy that will forever be missing from my life. We made the most of out just about every day out of the last seven.

Last Saturday we met with a family that I think will forever be in our lives. We met online, through a due date club on Babyfit.com. I knew prenatally that MJ would be born with CDH, their family did not know that their precious son, Eli would be born with CDH, as well. Because of our experiences with our sons, we are forever bonded, and I am so happy to have that connection with them! Eli was a CDH Warrior and came home in just 30 days! Recently he got rid of his feeding tube and is doing wonderfull now. We met for dinner and had it not been for Will and Eli getting overly exhausted, I think we would have stayed there all night! Will was just fascinated with Eli . . .

Eli, however, did not share the same fascination . . .

After our visit and stop in Indianapolis with them, we headed on over to Cortland, NY to visit my sister and boyfriend. We had a great time with them! Tracy is pregnant and due in Decemeber, which is very excited for our family. Because we live so far away, we don't get to see each other very often, so I was so excited that we were able to stay with them from Sunday to Wednesday. We did a lot of stuff with them, including strawberry picking, which Will absolutely LOVED!

Once we left on Wednesday, we decided to swing by New York City for some quick site seeing before heading to Philadelphia. It was well worth it! Neither of us had ever been before, so we were very excited to make a quick stop! We stopped by the Statue of Liberty and Ellis Island and drove past the World Trade Center sight before leaving. We even stopped for some delicious pizza!

After NYC, we finally made it to Philadelphia for the CDH Summit. We got to meet some wonderful, amazing people who are doing some wonderful, amazing things for CDH and CDH Research. There is so much to talk about - I really don't know where to begin!

The Children's Hospital of Philadelphia (CHOP) was there and we learned how they treat CDH babies, pre and post natally. To say this was hard to listen to was an understatement. We spoke with CHOP while I was pregnant and seriously considered going there to deliver Will and MJ. But in the end, we thought we had made the best decision and we stated in Kansas to deliver our boys. Hearing them talk about how they treat CDH babies, what there statistics are, and to see how dedicated these doctors are, well, those what-ifs started to creep into my mind. Don't get me wrong - Children's Mercy Hospital is a wonderful place to be, and they are full of top notch doctors who care, as well. I just don't think that I can't not think about the what-ifs. Especially when I was able to see CDH survivors right there in front of me. One of them was born just after Will and MJ, and he was doing great. Will and him got along quite well, and it was too cute for words. But at the same time, seeing Will interact with another little boy just his age, who survived CDH, really got to me. I suppose it always will, and I am going to have to see him play with other little boys for the rest of his life, so I better start sucking it up. 

Day Two of the Summit was probably the most wonderful part of it all. Willie, my hubbie, delivered an amazing speech called "How to deal with people who just don't get it - Communicating Grief and Needs" He did so amazing - he even surprised me!

My favorite part was how he talked about how people try and throw you a life vest - but you really get an anchor instead. Basically just that people who are not in the Babyloss world will never get it, and too often they say the wrong thing, even if they don't mean to. (If anyone would like a copy of his presentation, please email me at megan@projectsweetpeas, and I can send it to you - it has wonderful tips on how to communicate and deal with people who don't get it)

Then the very best part came - the CDH Researchers presented. I was eagerly anticipating what they had to say the whole time. I always thought that we would never be able to participate in the Research Studies because we lost MJ. But I was wrong! We had an autopsy performed and they save samples for a few years, which means that we CAN participate. I was so excited because it means that MJ's life will help so many others. But that's not even the best part. Their presentation was on genes and how they are trying to find the gene that gives you CDH. Well, I raised my hand and explained that I have identical twin sons, one with CDH, and one without, so how can it be a gene? They said that somewhere, somehow, something happened to one of these genes and that gave MJ CDH. They then asked how I knew that they were identical twins, and I told them that my placenta was tested after birth. After their presentation came over and asked if we were willing to enroll in the CDH study because having identical twins like ours - one with CDH and one without is how they are going to get a breakthrough, because they can compare them to each other and see where and why there is a difference. Currently there are over 400 families in the study, with only eight sets of identical twins. I am so extremely happy to say that we are the ninth family of identical twins! To know that my sons, BOTH of my sons can contribute so greatly to research makes my heart fill with joy. MJ can and will go on to help and possibly save the lives of so many. I am filled with tears of happiness. My little boys are so incredibly special. So we all got our blood taken, Will, too, and he was not too fussy about it! He did great!

 

So to sum it all up, it was a tragic, yet sometimes almost magic, beautiful week.  Tragic because I so missed my little boy and was constantly reminded of what we are missing. Yet magic because we were able to meet so many amazing people who have made an incredible difference in my life during the past 10 months. Beautiful because I know that this is only the beginning of great things for our family. My family of four is able to contribute to something incredible.

How's Motherhood Treating You?

Today I was asked a very simple question. How's motherhood treating you? As I sit here and ponder the true answer to that question, not the one I gave, I feel as though I have two separate answers to that question. On one hand I am in love with every single minute of it. Will is such a happy baby and brings so much joy and laughter and love into my life. When I am with Will, it's almost as if everything is right in the world and there is no heartache or tears. Almost.

And then I remember. I look at Will, and I know there should be another smiling baby sitting right next to him. I should have two identical babies in my arms to love and hold and cherish. I know that MJ should be able to live his life just as Will does.

So how do I answer that question honestly? How do I explain that sometimes I feel as though I am living two separate lives? In one life I am a happy new mother with an amazing son. In the other life I feel as though my insides are shredded and the pain on knowing my son died in my arms is too overwhelming to bare. I don't think I could ever answer that question truthfully if and when I am asked again.

Lately I have been thinking a lot about twins and why my twins are separated by death. There has been a commercial for Best Buy on lately about sending two identical twins to buy the same thing at different stores. The commercial goes on to reveal that these identical twin women go on to marry two identical twin men. I hate that commercial. It's like every time I see it, I am reminded that my identical boys will never have that bond. They will never dress alike, they will never pretend to be each other, they will never get to stay up late and get in trouble together, there are so many things they will never get to do. It's so unfair. And not just for me, but for each of them. Will will never get to know his brother. He will never remember seeing him alive. He will only have pictures and the memories of his parents. Sometimes I just want to scream WHY?! WHY ME?! WHY MY TWINS?! How on earth did this happen? Why did it have to happen?

This has been a pretty rough past five or six days for me. Sometimes I feel as though nothing can ever be easy for me and Willie. I just want something to go our way. I want something to be easy for us. I don't understand how some people just have so many good things happen to them, and others have this hard and difficult road to follow. I want one thing, just one thing to go our way. We are trying and have been trying for baby number three for quite some time. I had to used the fertility drug chlomid to conceive Will and MJ. I was on the drug for two months, and both times I was able to ovulate. Two weeks ago was my first month on chlomid, and Friday I went in for a follicule scan to see if the chlomid was going to work. It didn't. So now we wait to hear back from my doctor to see what our plan is. He is out of the office until tomorrow, so we are just waiting now. I assume that next month we will try again with chlomid, just double the dosage and hope for the best. I don't know why, but for some reason I have this feeling that it's going to be even harder this time to conceive. I have this feeling that my c-section did a number on my uterus and I just won't be able to conceive without a lot of help. I am scared. I am frustrated.  And I don't understand why yet again, life is only getting harder for us. So many people around me are popping up pregnant, without even trying, or planning for a baby. I just don't know why we can't be one of them. One thing, I really just want one thing to go our way.

However hard things may be in our life, I am always thankful for what I do have: an amazing husband and son, a wonderful family to fall back on for support, and a few close friends to get me through the really rough days. In closing, I found this poem on Rachel's blog and found it very fitting. If you are not a babyloss momma, please know that in no way am I trying to discredit you as a mother. It simply means, to me, that because of what I have endured, I am more thankful for what I do have.


Thoughts on Becoming a Mother

There are women that become mothers without effort,
without thought, without patience or loss and though
they are good mothers and love their children, I know
that I will be better.

I will be not be better because of genetics, or money or that
I have read more books but because I have struggled and
toiled for this child. I have longed and waited. I
have cried and prayed. I have endured and planned over
and over again.

Like most things in life, the people who truly have
appreciation are those who have struggled to attain
their dreams. I will notice EVERYTHING about my child.
I will take time to watch my child sleep, explore and
discover. I will marvel at this miracle every day for the
rest of my life.

I will be happy when I wake in the middle of the night
to the sound of my child, knowing that I can comfort,
hold and feed him and that I am not waking to take
another temperature, pop another pill, take another
shot or cry tears of a broken dream. My dream will be
crying for me.

I count myself blessed in this sense; that God has
given me this insight, this special vision with which
I will look upon my child that my friends will not
see.

Whether I parent a child I actually give birth to or a
child that God leads me to, I will not be careless
with my love.
I will be a better mother for all that I have endured.

I am a better wife, a better aunt, a better daughter,
neighbor, friend and sister because I have known pain.
I know disillusionment as I have been betrayed by my
own body. I have been tried by fire and hell many
never face, yet given time, I stood tall.

I have prevailed. I have succeeded. I have won.

So now, when others hurt around me, I do not run from
their pain in order to save myself discomfort. I see
it, mourn it, and join them in theirs.

I listen.

And even though I cannot make it better, I can make it
less lonely. I have learned the immense power of
another hand holding tight to mine, of other eyes that
moisten as they learn to accept the harsh truth and
when life is beyond hard. I have learned a compassion
that only comes with walking in those shoes.

I have learned to appreciate life.

Yes I will be a wonderful mother.

-author unknown

A lot on my mind

Today I am packing for the CDH Summit in Philadelphia that we are going to next week. We are making a road trip of it, and we are really excited. We get to meet another CDH momma that we met online on our way. When we were pregnant we belonged to a due date club on Baby Fit.com We both had CDH babies. I knew ahead of time, where she did not know ahead of time. We lost MJ, and her son survived and is doing wonderfully! I can't help but think about if we didn't know and what sort of emotions that we had. I don't konw which would be better, knowing about CDH or not.

Anyway, after our stop in Indianapolis to meet them, we are headed to my sisters for a few days before the Summit. I am really excited to see her and her boyfriend. They live in New York and we have never been there before, so it will be really great to see them and where they live. Then we head to Philadelphia for the Summit! Which is really exciting to finally be able to meet so many different people that I have met online, and never in person before. Plus, we have never been to Philadelphia before, so we are excited to eat some Philly Cheesesteaks! We have traveled with Will a few times before, via both car and plane, but this roadtrip is going to be quite a drive and a long time on the road. I hope that it all goes well and we don't have too many hiccups. But knowing life, we will :)

While I am packing today and getting things ready for our trip, I can't help but think how different life would be right now with MJ. We probably wouldn't be going to the Summit this week. MJ would hopefully be home from the hospital, but he may not, and our life would be drastically different. I look around our living room and its scattered with Will's toys. I think, if MJ was home right now, what would our living room look like? He probably would have come home on a ventilator or at least oxygen. He probably would have needed a feeding tube. What would our home look like? I remember when the doctor told us that MJ would be in the hospital 6-12 months. He was talking to us and was very frank and matter of fact. No emotion. I so desperatly did not want to cry in front of him. Dr. K was the head of the NICU and one of the most respected doctors at Children's Mercy. I bit my lip so hard to keep from crying, it bled. He left the room and I just lost it, I was holding Will and I was crying so bad. Our nurse that day, Phyllis, held me and I just sobbed. At the time I was thinking MJ would be home before Christmas, which would have put him at five months. I was thinking, how are we going to manage a year in here? And a ventilator at home? How will I ever figure it all out? But Phyllis, she talked to me and she said that no one had ever talked to us about MJ coming home because they didn't think that he ever would come home. And I remember her telling me that she truely though MJ was a survivor, that he was going to make it. She said she felt it in her heart, and the other nurses did, too. It made me feel so much better, and I kept repeating what she said in my head, he's a survivor, he's coming home. We lost MJ three days later.

I miss him so much, each and every single day. That hole in my heart sometimes seems so huge. So while today we pack to learn more about CDH and meet the people that have gotten me through the last nine months, I miss MJ even more then I did yesterday. However, I think that every day. Each day without my son makes me miss him more. I will never stop loving MJ. I will never stop missing MJ. I will always be his mother, and he will always be my son.

That's Quite a Story

Yesterday I had a dermatologist appointment for a mole check. (Being Irish I have tons of moles and get them checked to make sure none look cancerous.) As my dermatologist was checking over my skin, he asked the dreaded question. "How many kids do you have?" I was hoping he wouldn't ask because last time I was there getting checked, the nurse asked me the same thing, and it was just maybe six to eight weeks after we lost MJ. I broke down crying last time, and I was hoping that she put it in my chart not to ask that question. So I told him, we had twins, and we lost one. Many people assume when I say that, that MJ was stillborn, and he asked if that was the case. So I then explained to him that MJ had CDH and what CDH was, and I was very surprised when he wanted to know all about CDH and MJ's short life.

It made me feel good to talk about MJ and tell someone about him. Hardly anybody asks about MJ any more, and he really is one of my favorite things to talk about. I think about him constantly and when someone asks about him - no matter how much I cry while I talk about him - it makes me feel good that I can tell someone else how hard he fought to live.

Just as he was leaving, he said, "Thank you for sharing that with me, that's quite a story you've got." 

Well, it's not a story to me, it is part of my life. It's a part of my life that brought me the best 34 days of my life, and one day that will always be the worst day of my life. It's part of my life that makes me more comfortable in a hospital then around a newly, happy, pregnant women. It's part of my life when I had to sign three times for my son to be cut open by a surgeon attempting to save his life. It's when I had to make a decision that no parent should ever have to make, it's when death tore my heart out and took my son. 

So my story, MJ's story, some people look at me in amazement when I tell it, shocked beyond belief at all that I have endured. And to me, it's my life, it's 35 days that have changed my entire way of thinking, it's shaken me to the core, and I wish so badly I could go back and do it all again. I wish so badly that I could take those 35 days with MJ and turn them into eternity.

Missing Him

As each day passes without MJ, it brings along new feelings, thoughts, and heartaches. I wonder more and more each day what life would be like with identical twin boys. Would they look alike to me? How hard or how easy would it be to tell them apart? Would my heart be filled with joy every single second? (I know the answer to that one - YES). Will brings me so much joy - I can't help but wonder how different it would be with MJ along for the ride, too.

I never thought for one second that I would have to live without MJ. I mean, I thought about it, but I never really grasped the thought until probably a good month after we lost him. It didn't really hit me actually until about three months after we lost him. I didn't really accept it until six months. And now, we have been without him for nine months and four days, and I think I am accepting that I have accepted it. My days are filled with unexplainable highs, and unexplainable lows. One minute I am simply amazed with Will and the joy and love he brings to my heart. And the next minute I am crushed with grief.

And no one wants to talk about MJ anymore. It seems as though people are scared to talk about him. Scared that they will hurt my feelings, or bring back all the pain. The truth is that the pain will never go away, and I think about him constantly. Every sunny day, every rain drop, and everything in between. I think about him. I miss him. I am consumed with grief and missing my baby boy. And honestly, the pain - that raw emotion that brings it all back - it makes me feel closer to my son. I actually like feeling it all over again. Because it means that I haven't forgot, and I haven't let go, and honestly, I never will. The raw pain and the raw emotion are good. It's the kind of pain the cuts you to the core, and physically hurts. It feels like being stabbed over and over again in your stomach. But its good, it means I love him.

But I can go on. I have to go on. I owe it to my husband and my son here on Earth. I have to smile, and I have to live. And that hurts, too. It hurts knowing that I must live with a scar on my heart, one that will never be repaired and will never go away. I have to smile, and laugh, and love, and live. And I will, and I am.

But what I wouldn't give to be this girl again:

This is me the morning my water broke - I was so full of excitement for meeting my boys. I knew, I just knew that MJ would be one of the lucky CDH babies that survive and thrive. I couldn't wait to see both of my boys, and for MJ to have his surgery and come home. We had everything ready: our living was full with two swings, two bouncers, diapers and wipes stockpiled, two cribs in their room, the name Will hung above one, and MJ hung above the other, two of every outfit that we had, two high chairs, two car seats, and one double stroller.

I was ready to become a mother of twins. I still am - just never in the way that I imagined.