Promises

I love rainbows, always have always will, but really who doesn't? Last night after it rained we took the boys out on the front porch and there were two huge rainbows. The one you could just see but the other one was so bright you could make out all the colors. A few days ago Sesame Street was all about rainbows and Skyler remembered about the colors and we got to really talk about it. He is getting so big!

Funny thing about rainbows, I can remembered distinct times in my life and emotions I was feeling because I saw a rainbow. I remembered riding in a car with my best friend and her two sisters when we were like 10. We had all gone to see a movie and it started to storm and the power went out. It really sucked to miss the movie but on the way back to their house we saw these amazing rainbows and it just made the day better. I once saw 2 complete circle rainbows while playing tennis in Washington. Someone hit the ball and when I looked up to hit it I saw the rainbows. We all stopped playing tennis, laid down on the court and just looked at them for a long time. It hadn't even rained by us that day. Magical.

They just don't make sense, rainbows. I mean we all know about light and water and reflections and all that jazz, but really? You never know when you are going to get one, how big it will be, what part of it you will see. God is so creative and funny like that. Just showing off his sense of humor and love all at once.

Promises... they are a funny thing and I am still trying to figure them out with God. The entire time we were at the hospital and even in the past with jobs and money I would pray and pray. In the back of my mind though I knew there are no guarantees. Just because I want something to go one way does not mean it will. My will is not God's will so prepare for more than you think you can handle. Somehow everything turns out better God's way. Harder, yes, richer I guess you could say though.

Yesterday I had been thinking about how so many things in my life led me up to Gav being in the hospital and me having the ability to handle it. So many people have told me how strong I am and I just don't really feel strong. I take what is given to me and sort it all out. And for my entire life God has been giving me small pieces of this chaos to deal with so that at this moment in time he could give it all to me again at once. Over the years I have probably reminded myself of the promise that God will not give you more than you can come up under thousands of times. I did not believe it this time though. I really thought he was going to break me this time. I felt like Job and I wondered if my faith was strong enough to not curse God.

Can I hold this weight? There are no guarantees. The two prevailing thoughts fighting in my mind.

And then you have things like rainbows. We did hold up. We did not have our son taken. There are promises. It rained, it stormed, there are still bouts of thunder but there will always be rainbows.

Making you uncomfortable?

This might come as a surprise or a shock to you but this picture of Gavyn is one of my favorites. Not just one of the favorites from his stay in the hospital either, just one of my favorite pictures of him. One of the walls in our family room has a bunch of frames that I change the pictures out of periodically. Two of the frames are 8x10's and I just got two pictures of Gavyn printed and put them in the frames, this picture is one of them. To me it was natural to print the picture and frame it. Honestly, when I went to get pictures ready I knew immediately that this picture was one of them, it was the second picture that took some time to pick out. It never occurred to me that it would be odd to frame this picture. Yet I wonder if it makes others uncomfortable (not that I would ever take the picture down). We have had people over to the house and when they look at our pictures people comment on every or any picture but this one. It struck me the other day that maybe they found it odd, isn't that something you want to not think about? For me it is such a big part of his life and something that is not just going to go away. It is part of his life story, our family history, and something that will be close to our hearts and minds for a long time. I know a time will come when this all seems like a distant memory but I also know that it could be years before my thoughts do not frequently go there. He is my little miracle and what a story he has to tell. This picture for instance...

The day this picture was taken sucked. Down right sucked and I hated it. In my last post I talked about the day we took many steps back, this was that day. Early that morning was when Gav could not breath on his own again and the breathing tube was put back in. The night before I had been able to hold him for 2 hours and when I arrived that morning the breathing tube was back in. The worst part about a breathing tube is that you are not allowed to hold your baby. I had no idea how long it would be before I could hold him again. This was right before the external shunt was put it. He had such a terrible time keeping his temp. up and when he would get cold his heart rate would drop. At first he was in one of the little baby cribs that has a heater in it but the doc wanted him to be more elevated so they put him in a big boy crib. There was of course no heater so they brought in heat lamps, thus the lighting. One of the nurses went and found these sun glasses for him so that his eyes would not be hurt. It is the only time I remember laughing when he was in the PICU. We just all laughed out loud because he was so cute! He looked calm, chill, just tanning on vacation. It felt normal. Something cute of your newborn and you take a picture for the scrapbook, the picture frame, send it to the relatives over e-mail. It was a small present before all hell broke out and I thought that I would lose him.

There are all these stories that have a feeling of needing to be told. And how many lives will he touch, will I touch, that relate back to these times that no one will know about?

Mr. Pelican

Today I was playing with Gavyn in his crib and he was watching his stuffed animals. I picked up his little puppy dog and put it on his tummy. He smiled, laughed and started to grab for it, trying to put it in his mouth! These are the little milestones that bring tears to my eyes and a smile to my face. We still are not sure how Gavyn will develop, he could grow up to be a neurosurgeon or have delays of any kind. When a small or large marker is made it will always bring tears to my eyes for little Gavyn.

Tonight as the big boys went to bed and Gavyn was laying on the couch with me I got his puppy again to play with. I also grabbed his Panda Bear and Mr. Pelican. I lined them up on the couch for him to look at and talk to. Puppy Dog has a cute story, when Gav was in the hospital my parents kept Skyler and Nevin. One day when Mom took Skyler out he saw the Puppy and said, "Grandma, can I buy the puppy for Baby Gavyn, I have a penny." So sweet and innocent. The Panda was also bought by Grandma while Gav was in the hospital to sit in his bed with him. But Mr. Pelican was there from the beginning.

Mr. Pelican had been put in the bed Gav was laid in when he arrived at Glennon. We do not know where he came from or how he made it into Gav's bed but he did. The first few days he was in the PICU he had a wonderful nurse named Susan. Each time she would come in his room she would talk to him, joke with him, call him her little friend. She is the one who discovered Mr. Pelican in the bed and always made sure he was in a place where Gav could see him. She would lay him under his arms like he was holding him. It was a small thing that gave me so much hope. Gav's limbs were so weak that he was not moving them. I would sit there and stare at that Pelican under his arm waiting for him to just grab at it. Of course he didn't, he couldn't but I hoped.

Tonight we went to a worship night at our church. We took all three boys and we sang one of my favorite songs that had always brought tears to my eyes. I thought I had been through a lot until this happened with Gav.

My Saviour, He can move the mountains,
My God is Mighty to save,
He is Mighty to save.
Forever, Author of salvation,
He rose and conquered the grave,
Jesus conquered the grave.

He is a God who can move mountains and he did with little Gavyn. It has always been hard for me to comprehend how God could send his Son to Earth and let him die. And yet, now I can understand part of it more now. There was a moment when Gavyn was in the hospital... he was so sick. We took a few steps forward and then we took about 10 back very quickly. He had a breathing tube in, feeding tube, IV's in one hand and one foot and also his PIC line in his other leg. The pressure from his hydrocephalus had built up to the point that it suddenly pushed his brain down towards his spine, his heart was having trouble keeping up, he couldn't breath on his own... it was very scary. The neurosurgeon came and put the external shunt in which immediately relieved the pressure but he was still sleeping from the meds. I stood at his bedside crying, not sure if he was going to wake up or not. When he did open his eyes for the first time he tried to cry but there was no sound because of the breathing tube and his eyes shot open, filled with terror as they looked around. I touched his cheek, said his name, tried to soothe him, he fell back asleep. That is when I prayed for God to take him. It sounds horrible I am sure but I prayed that if he was not going to recover, if he was going to be brain dead, I wanted God to take him home. I wanted what was best for him, not for me.

Those are the feelings I am still trying to process. That is why I cry over him, I didn't think I would come home with him. God is good, He is mighty to save. He let me keep my angel, He didn't need to bring him back home yet.

My First Post

It has been 4 weeks and 5 days since Gavyn came home from the hospital from his last extended stay. We have only been back in the ER once since that day, have had 2 tests done and 3 doctor visits. Today has been a lot. He is 3 months today and must be going through his 3 month growth spurt. He has been crying a ton, wanting to eat more but than not wanting to eat because he is so fussy. Normally he is quiet, calm and a love to be around. If we had not just seen his Neurosurgeon yesterday I would probably be panicking right now. Thankfully he had been like this yesterday as well and they were sure it was just his normal growth spurt. How do you not panic though when all the sings for a shunted babies shunt not working are the same as a growth spurt or just colic? It is being between a rock and a hard place, take him to the ER every time he cries or wait at home and hope nothing terrible happens. Add to that all the Mommy guilt a mom like me is bound to have and there is no winning.

Today I finally broke down and realized that my Grandma did indeed pass away last weekend and I won't ever be able to call her or see her again. We have had a rocky relationship for awhile now. She had given up on life when my Grandpa passed away and she has been sick for a really long time. She had stopped leaving her house years ago and trying to go see her with my two wild toddlers was never easy. For the last few months (since Gavyn was born) she has not cared about anything, she never asked how Gavyn was when he was in the hospital. She just did not get it. But that meant that we did not make the time to go see her once things started to settle at home. She never got to meet her 3rd. Great Grandchild. Another spoonful of guilt added to my plate.

She was a wonderful woman though, she married a handsome adventurous man who took her all over the world. They were generous with the many blessings they had and she loved all of us a lot. The woman I loved the most and looked up to the most passed a long time ago and I had been waiting for her to come back... she never did and that is hardest of it all.

Maybe one day the intense feeling of panic and threat will go away that comes after having a child be terribly sick. I don't know when that will happen for me. Right now I am just trying to process the emotions I am having as they come to me.