CHD Week - Day Three - Siblings

When I found out in March of 2005 that the child I was carrying was going to be a boy, I cried. There was absolutely nothing I wanted more than to have a boy. I already had a 15 month old girl; my life was complete. I realize I am just a little bit biased, but they were so stinking cute too.

Kaitlynn at just a hours old.

Jackson at just a few hours old.

Kaitlynn is so cute. I love her blue eyes.



One of my favorite pictures of Jackson.

I just wanted to live a simple life of raising my two children and give them the best life possible. Three years later everything I wanted for my simple life changed, FOREVER. We found out we were having a third baby. Our third child, Madelynn came with surprises of her own. She was diagnosed with a CHD at 10 weeks of age.

The day I found out, I received a phone call from a doctor and Kaitlynn and Jackson were in the room and saw me crying. They came running over too me and asked why I was crying. Trying to be present for them I had to think fast on my feet. I told them that Madelynn's heart was not shaped like theirs and we needed to take her to a special doctor to fix it. I remember taking my two index fingers and tracing a heart over Jackson's chest. He then gave me a hug. One I will remember forever.

CHD Siblings have a hard road to tow. Madelynn's CHD Siblings are older than her so they have some memories of the chaos. Kaitlynn's fifth birthday was basically cancelled because the day before Madelynn was admitted back into the hospital due to complications after surgery. Jackson didn't believe me she was still alive. 21 days in the hospital to a 3 year old was forever. I can't tell you how many times I had to cancel plans and Kaitlynn and Jackson would wail, "But Mommy you promised!!" Words even today make me want to hide in the corner and cry.

Kaitlynn and Jackson have memories that Madelynn will never have. One of the most treasured bittersweet memories is fishing with Uncle Jason. They were old enough to remember catching their first fish spending a few days with him and Uncle Jon. Madelynn met Uncle Jason before he died but she did not have these kinds of memories. She barely remembers Uncle Jason other than what we tell her so she always knows who he is.



Daddy and Jackson holding his first fish.

Kaitlynn and Uncle Jason holding her first fish.

As a parent your hope is to always give your children all the same opportunities. As a CHD Parent it is 200 times more stressful and difficult trying to balance doctor appointments, specialist visits, tests here and there for your heart warrior and heart healthy kindergartener and preschooler day to day living. There were so many days by the time I would go to bed I just wanted to cry. I had always felt I had failed my CHD Siblings again. IT SUCKED!!

Looking back at all the tears shed, failures experienced and pure exhaustion felt we came out better people. I have learned patience. I have learned failing is okay. I have learned just because daddy does it different, doesn't mean it is wrong. I have learned to stop and savor the moments, however small they may be.

Jackson was three when Madelynn was born and had her open heart surgery. He was in preschool at the time. When it came time for Madelynn to join him I could not afford it. I had to withdraw him and have someone babysit he and his sister while I worked. Jackson did not graduate from preschool. As his mother, EPIC FAIL!! He was the only one not to have that experience. It makes me sad even today.

But something amazing came from what Jackson lost. He didn't have the social experience of preschool or the graduation like all the other 5 year olds. What he gained was a gentle soul. Spending everyday with Madelynn after surgery and learning about her needs he wanted to help her all the time. But this carried over in everything he did. If there was a smaller student in the class he wanted to help them. If someone didn't understand the math assignment he is there to teach it not just give the answer. If I allowed him he would give the shirt off his back everyday.

What would have happened to his gentle soul had he had all the same experiences as his sisters?? As I cried that I failed him.....I later learned that God's plan was much greater. Jackson's loss turned into one of his greatest gifts.

As crazy as he makes me, the joy is always so much greater.



This is the Opie Taylor smile he acquired from his daddy.

My sweet boy and his gentle soul.

 

His first soccer season.

I wish I could say that Kaitlynn had the same type of "AHA" Moment that I did with Jackson. For her this journey has been one more of anger and lots of yelling. Even though Kaitlynn is the oldest she never experienced being an only child. Before her first birthday I found out that we were having Jackson. She has never known life without Jackson.

I love those blue eyes and freckles.

Because of my high stress level I was more often than not very short fused. One day as Kaitlynn and I were arguing about something she looked at me and asked, "Mommy I know you are mad at me but do you still love me??"

She is the reason I wanted to have more kids.

It stopped me dead in my tracks.

My response......."I love you every second, of every minute of every day, no matter what".

I didn't know it at the time but that is what she needed to hear. She has stood back and been short changed so many times. She had to hear "No",  "I'm sorry I forgot", "Can we do it tomorrow". For the longest time I had to stop saying' "I promise". I could no longer promise anything. That realization was very depressing.

Love her....

However, one day it was not turning out to be a very good one, I had to tell the kids I had to cancel our plans and do it another day. I was waiting to hear Kaitlynn get upset with me. Instead she walked up to me, hugged me and said, "That's okay, you still love us right".

Every second of every minute of every day........

I love to watch her play soccer.

Being a sibling of a CHD Warrior is a fight of a different kind. It is hard on everyone involved. The only advice I can give to both parents and siblings is never give up. Never stop fighting. I had to work just as hard for my heart healthy kids as I did for my CHD Warrior. Yes some of it is guilt for all the additional time my heart warrior consumed. But I also had to do it because my heart healthy children deserved everything I had to give as well. Even on the days I felt like I had nothing left to give.

I love you to the moon and back Kaitlynn and Jackson.

TTFN~