11-23-2010

So much to be thankful for... God has blessed us in so many ways this year. I never thought I would be the mother to such a precious little guy. I find myself just looking into his eyes thinking he is perfect! This is not the path I would have chosen but obviously God thought it was the journey he wanted us to travel. I have recently heard a song - No Matter What by Kerrie Roberts when I heard it for the first time I knew it was meant for me. Some of the lyrics are:

I'm running back to Your promises one more time

Lord that's all I can hold on to

I gotta say this has taken me by surprise, but nothing surprises You

Before a heartache can ever touch my life

It has to go through Your hands

And even though I keep asking why

No matter what, I'm gonna love You

I know You can find a way to keep me from the pain

But if not, I'll trust You no matter what

When I'm stuck in this nothingness by myself

I'm just sitting in silence

There's no way I can make it without Your help, I won't even try it

I know You have Your reason for everything so I will keep believing

Whatever I might be feeling, God You are my hope

And You will be my strength

I find myself being so thankful for every second I have with Jordan but I still question Why? It just doesn't seem fair...everyday I live in fear of the unknown, wondering what our next doctors appointment will be like and the worst of them all is knowing we still have open heart surgeries ahead of us. I know God has blessed us so much in the last few months and I feel so guilty and selfish for questioning why my son has to be unhealthy. I blame myself everyday for his sufferings. Wondering if I had done one single thing different would he be healthy. It's so hard to look at him so perfect but know he is very sick. Those are the words you hate to hear come out of the doctors and nurses mouth. I know he is sick and he will NEVER be healed but I hate being reminded every week, every day, every second. Every time I look at his chest and know that he only has half a heart and how long will his heart last. I can't imagine my life without him. He is my everything!

I have found a new meaning to my life and my life as a mother. No one could have ever told me not to have Jordan- He is the little boy I have always wanted. I have asked God for him so many times, I even knew what his name would be when I was 12 years old. When I found out I was pregnant it was the best day of my life. Then when I found out he had a heart defect that would never be fixed it was the worst day of my life. I experienced so many emotions during my pregnancy. I can remember sitting at the table looking into Jordan's room and thinking "what if he doesn't get to come home." I am so lucky to have been able to bring him home and have a normal life for almost three weeks now. We are home as a family for the holidays. There are so many families we met this last stay at Children's Hospital that weren't as lucky as we were. My heart still breaks for them. I pray for them daily to continue to find comfort. God has been good and just like the song says I will trust you no matter what and I will find my strength in the Lord. That is so true! So many people ask "How do you face each day?" the only answer I have is lots of prayer and knowing God has a reason for everything and I have to keep believing.

This past week has been very hard. We have several doctor appointments weekly and home health care comes once a week. There is not much sleeping going on in these days. He has so many needs (medicines, breathing treatments, vital signs being checked) that sometimes it becomes overwhelming. But every night before I go to bed I thank God for one more day with him.

We have a cardiologist appointment tomorrow so once again my mind is going round and round. I have so much alone time with him that its hard not to let your mind play tricks on you. I am constantly looking at him to make sure he is breathing and that he isn't turning blue. I will post an update on doctors appointment after we get home. I want to say thanks so much to everyone that has prayed for our family. It is the prayers that get us through so many days that I didn't even want to get out of bed. Thanks for all the unconditional love and support. Times like this is when you see who the people are that love you for you and the ones that really matter in life.