Night Owl.....

I am feeling like a night owl tonight, The pain I am feeling is overwhelming right now. I can't sleep, I feel sick to my stomach and don't even want to be right now. At this moment I am at the point where looking at the positives in life are just nonexistent. Deaken would have been six months old today and this is hitting me hard. I long for what could of been, what should of been. I also think about if Deaken was here we would be preparing for a plan for his second surgery that he would have in the next couple months. Wow how time does fly, I feel like it was not too long ago he was here and had his first. I can't even imagine what he would be like at this age and what it would be like to hand him over again to the surgeons. I see people having a hard time bringing their baby in for shots and mothers can't handle that. Imagine handing your baby over for open heart surgery, they just don't compare. I hate that any parent has to hand their children's lives over to the hands of the surgeon to keep their baby alive they have no other option, it just breaks my heart. A dear heart mom Natalie, her son Aidden was due for his second surgery this past Monday the 13Th. Unfortunately he had a bump in the road and surgery was postponed. Please keep Aidden and his family in your prayers.

The week of the 12Th and the 17Th are never easy, It is a struggle to get through my week. I find what gets me through is the simple "Thinking of you/Deaken" or "praying for you" whatever it may be that keeps me going... This Sunday the 12Th I was feeling a little low when it was the first time I didn't get anything. I know this past weekend was about Deaken and I did receive lots of support. I knew that with time things would be different. Maybe it was just harder because the past 4 months I had all that support on the 12Th and then for there just to be nothing... I don't want anyone to feel bad about this so please don't. I am just dealing with a lot of emotion over this and just putting it out there is helping take the loud off my chest. I do wonder when I will stop counting the months Deaken has been gone and when it will just be the years.... Same with his birth date the 17Th, will I continue to count in months??? I don't know. I realize I might expect too much from people, but please know this is what my life revolves around.

Happy 6 months to my sweet baby boy, Daddy and Mommy miss you very much and love you more than anything. We will be sending 26 red balloons up this evening for you and all your angel friends.

Staying Positive when everything is negative

First I have to say what a great weekend and tribute to the CHD warriors and angels. This weekend was the first annual walk in Alexandria for CHD. It's My Heart did an awesome job and it was so much more than I expected it to be. I had the best support team with me, Thanks ladies for making the trip! I also loved to see and meet the other CHD families.

This weekend also marked 5 months without Deaken. Instead of wasting the day away, which was all I really wanted to do. I decided to be somewhat productive. We went for a family walk that morning, ran some errands, had me time with a magazine and I finished my story for Matters of the Heart Vol. 2. As I was writing the end to Deaken's story I happened to look at the clock, it was a little before 9:30pm and it made me think what we were doing 5 months ago at that same time. I remember thinking this is the end, the end to everything...Our hopes, our dreams, our life...
When I think back of course I would feel that way in that moment and still sometimes do. It isn't the end of Deaken, it is true he's not here but it is just the beginning his story lives on, his memory lives on.

I try to live my life as positive as I can. No, I am not perfect and far from it, there are times when I can be the most negative person. Without going into detail, our family has been dealt a very unfortunate hand this year, with lots of struggle, disappointment and hurt. In the end I have faith all will work out and just try to be a good person through all this and stay positive. Nobody is guaranteed another day. Would you want to be remembered on your last day as negative, hurtful to others or depressed? When I'm gone I want people to think of me as a person who always saw the good in a bad situation. Going through unfortunate situations help us to learn from mistakes, grow a little stronger and make you who you are.

You never know the struggles that another person is going through, some just don't care to. I am fortunate to have a neighbor that came over today and she knew something was going on and asked if I had a baby. She said she saw flowers being delivered and the other day in the window she saw a crib mobile, but hasn't seen a baby. I explained what had happened and she shared with me this Oct. marked 4 years since her little boy passed away. It is so nice to talk with other mom's that get it that unfortunately lost their baby also. It reassures all the pain, hurt, and anger I feel is legit. I have a great support group but it is just different talking to those who have lost a child.

Life is what you make it. What would it be without the ups and downs? I will get through this, all I ask is for time, understanding and keeping Deaken's memory alive.

Not Alone

It has been a tough morning.... After Jeff left for work, I went back in bed to sleep a little bit longer. All I could think about was that dreadful night walking into Deaken's hospital room, His lifeless body, two nurses performing CPR and the doctors all around Jeff and I. This is a vision I often play over and over in my head, I wish things could of been so different. I often think about all the nurses that took care of Deaken, he was so loved. We could tell his nurses had a special bond with our little Deaken. His night nurse called him her "little boyfriend" and we knew he was well taken care of at night when we weren't there. That night when we chose to stop the CPR, the two nurses performing were in tears. I am so grateful for the angels who took care of Deaken and hope that someday when we are ready we can go back there and let them know how much we appreciate them.

I know God was with me this morning as I cried and know he continues to carry me....A good friend shared Deaken's story and about CHD to co-workers, each month they choose a charity to raise money for and the co-workers voted to raise money for CHD! She said nobody ever heard anything about Congenital Heart Defects....How is it that every 13 minutes a baby is born with a CHD, yet most have never heard about it???? I think it is safe to assume these people have children or plan on it. Deaken sure has made an impact on so many people in his short 26 days, I am so proud to be his mommy. Thank you Mil for sharing Deaken's story and for helping raise awareness=)