Just So You Know...

 Living in a small town there are a lot of people, who know people, who know other people, who know someone that you know. I have had several people come up to me (or one of my family members) and tell us that they read the blog. Sometimes I don't know what to say. It still catches me off guard a little bit that people actually read here and that they care so much about our family. Then they usually say something about how brave or strong we are or something along those lines. Honestly, I get a little bit embarrassed (although I appreciate your kind words!) because I'm just a normal person, trying to figure out how to deal with life.

I forget to take out the garbage. My house is only clean sometimes. Danny does the majority of the cooking around here. Sometimes I put things in my online shopping cart just to feel like I've been shopping. I throw couch pillows at my kitty when he sharpens his claws on the couch. I have this disorder called "hangry": a state of anger caused by lack of food; hunger causing a negative change in emotional state (ask any of my friends or coworkers). I spend too much time on the computer. I am not a morning person. It is really hard for me to see or look at pictures of twins because I am jealous. I stay up way too late at night because I hate going to bed and tossing and turning waiting for my brain to turn off. I am happier staying at home with my family or a few friends than going out with a big group. I don't do my devotions every day. Sometimes I have trouble keeping my mouth shut and I say things I should keep to myself and end up with my foot in my mouth. After Carter died, I was given a teddy bear that I slept with the entire time I was in Seattle. I get irritated when things aren't done how I think they should be. I eat way too many jelly beans and bowls of ice cream. I don't usually get dressed before noon and even then, sometimes "getting dressed" means changing out of my pajamas into sweatpants.

Whew, now I feel better. Thanks for listening.

Wonder

I wonder a lot of things about Cohen. I wonder how losing his twin is going to affect him. I wonder if he will think about what could have been, the way we do. I wonder if he will feel the loss of his brother. After he was born, I wondered if he wondered where Carter went. The last few days before the boys were born, whenever they did ultrasounds, Carter would have his head resting on Cohen's chest. Maybe he knew what was coming and he just wanted to get one more snuggle in before he left this world. It is hard enough to lose a child, but I think one of the things that makes me the saddest is not getting to see my boys grow up together. You always hear about what a special bond twins have and it breaks my heart that Cohen won't get to experience that and that we won't get to see that happen.

 {Pictures from Auntie Karen}

As I sit and rock Cohen at night, I look at his little face and wonder who he is going to be. I wonder what he is going to do in his life. I have to think that God has some pretty special plans for a little boy with such a dramatic story by the age of 7 months. I wonder why God chose him to face everything that he has. Not in an angry sort of "why him" way (although I've been there), but in an "what is this preparing him for?" kind of way.

When Cohen went in for his Synagis shot (for RSV), we were going over his history and the nurse was asking lots of questions. I was going through the usual... he was born 15 weeks early, lost his twin brother, was in kidney failure, had an enlarged heart and a PDA, couldn't have surgery because of a horrible skin infection that they thought was all throughout his body, has chronic lung disease, multiple blood transfusions, brain bleeds, bleeding in his lungs, etc. And then she asked "So what medications is he on and what are his current issues?" And I told her that he really doesn't have any other than chronic lung disease and being on oxygen to help him grow. He doesn't take any medications, which is quite unusual for a preemie. I knew that Cohen was doing well, but it really hit me that day that for everything Cohen has been through, he really is mostly healthy. His lungs are improving, his heart is better, he has no problems from being in kidney failure, his infection is gone and wasn't anywhere else but his skin, his brain bleeds were the lowest grade possible and most babies have no effects from that kind. He hasn't had problems with hernias or reflux which are really common in preemies. How great! God really has taken care of and protected Cohen and I can't wait to see what he has in store for this little wonder boy.

Adventures

Yesterday we went on a little adventure. By adventure I actually mean something normal, but that we don't get to do every day. We went on another little walk around our neighborhood. Usually I put Cohen in his stroller but today it was actually sunny out so I wore him in the little carrier that I have and faced him outward so he could see what was going on. Anytime we go anywhere he usually doesn't get to see what is going on because we have him all covered up to keep out germs. So, I wanted him to experience the great outdoors and actually get to see what was going on. It was a little colder than I had anticipated so we walked rather quickly. But, it was nice to get outside and even see a little bit of sun. We can't wait for spring!

Danny also went on a little adventure over the weekend. He and some of his friends went to Winthrop to try their hand at ice fishing. They didn't catch anything, but they had fun. We both like to be outside, but we kind of missed out on that over the last year, spending the majority of our time in the hospital. Danny needed a little outdoor adventure time so off he went. And, since they are guys, I don't have any pictures to share with you. The only picture I saw was of the boys feeding peanuts to a deer...boys will be boys.

I stayed home with Cohen but also had some friends from Seattle come up for a visit. My mom watched Cohen for a little bit while we went out for dinner and got our nails done. Hooray for adult time outside of the house! Then we came back and watched movies and ate a pile of junk food. Thanks for coming up Tiff and Tamara, I had fun!

January Calendar

This is our calendar for the month so far (this is more for me to remember :)

What Next?

I'm going to be honest here, sometimes I wish this wasn't my life. But, it is. This is my life as a 26 year old mom of twins, one in heaven and one on earth. I wish it didn't have to be this way, but it is.

So what am I going to do with it?

This is the question I keep coming back to. Yeah, we got dealt a crappy hand in life and I wish it wasn't this way. But, it is. Normal grieving aside, am I going to let this define the rest of my life? Is how unfair it is going to be what keeps me from moving forward? Now, of course I do and will continue to have bad days where I am going to think it is unfair, I am going to be mad, and I am going to wish things had been different. But overall, this thought just keeps coming back to my mind.

What am I going to do with these experiences?

I want to help other people whether NICU moms or parents who have lost babies. I want to do it for Carter. I don't feel like it was a mistake that we went through what we did. I believe that somehow, somewhere some good is going to come out of this. It has to. It just seems so clear to me that I could go one of two directions: lay in bed and cry "Why me" (which I do sometimes), or figure out what to do with this. To find out what I will do with the emotions, the pain, the experience of what its like to lose a child and to have a NICU child. I'm not "over it" and I never will be. But I will moved forward and figure out how to make good out of hardship.

That's where I am at right now. Waiting to see where our story is going to take us. Waiting to see what ways we will be used us to hopefully make things a little better or easier for someone else. Rolling ideas and projects around in my head, you know...in all my spare time.

And, since it's been a few days, here's your picture fix. You're welcome :)

 

Sunday Song

JJ Heller - Your Hands

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away
That You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crookedly lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

When You walked upon the Earth
You healed the broken, lost, and hurt
I know You hate to see me cry
One day You will set all things right
Yea, one day You will set all things right

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

Your hands
Your hands that shape the world
Are holding me, they hold me still
Your hands that shape the world
Are holding me, they hold me still

When my world is shaking
Heaven stands
When my heart is breaking
I never leave You when...

When my world is shaking
Heaven stands
When my heart is breaking
I never leave...
I never leave Your hands

Someday Heaven

On our way home from the pediatrician's office today we drove through the cemetary. As we made our way out, I saw that they were digging a new grave. It just brought back all the memories from the day of Carter's memorial. Of seeing that tiny grave for my son's tiny casket. I remember getting his casket with Danny and carrying it over to the table for the memorial. I remember lowering that little casket into the ground with Danny and thinking that it was the last time that I would see my son on this earth. I watched as Danny began putting the dirt into the grave, a dad burying his son.

I have been hearing of so much loss lately and it just breaks my heart. It has never been more clear to me that I am not made for this earth. I always thought that heaven would be a nice place to go, but now more than ever I know that it is my true home. I can't wait to get there. I can't wait to be reunited with my son who has been made whole. I can't wait for the day that I get to be made whole. The day when the pieces of my broken heart are put back together. I want to be in that place where there is no more pain, sorrow, or tears. I want to be in the presence of the One who can heal me.

"Never again will they hunger; never again will they thirst. The sun will not beat upon them, nor any scorching heat. For the Lamb at the center of the throne will be their shepherd; he will lead them to springs of living water. And God will wipe away every tear from their eyes"    Revelation 7:16-17

He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away."  He who was seated on the throne said, "I am making everything new!" Then he said, "Write this down, for these words are trustworthy and true."  He said to me: "It is done. I am the Alpha and the Omega, the Beginning and the End. To him who is thirsty I will give to drink without cost from the spring of the water of life. He who overcomes will inherit all this, and I will be his god and he will be my son.   Revelation 21:4-7