Today begins Congenital Heart Defect Awareness Week or CHD Week. This is something our family feels very strongly about. During our CHD journey, I have developed a few things I am very passionate about. One of those is remembering the siblings. Every family is different only child, oldest child has a CHD, youngest child has a CHD.
For those families that have more than one child, please do not forget the siblings and helping them find a new normal as well. I can honestly say there is a small time period I have no idea who took care of my other children. While Madelynn was in surgery and recovering in the hospital, I don't know who took care of her older siblings.
I remember calling people telling them what happened and asking if they could pick my children at day care. I remember calling the day care telling them I do not know who will pick up my children. It may be a different person everyday. But I promise you it will be someone you it will be someone they know and trust. I do not know when and if they got a bath. I do not know what they ate for dinner.
What I do know, we had an amazing group of people jump into action at a moments notice taking care of Madelynn's siblings as if they were their own children. But I also know that Madelynn's experience not only changed her forever it changed her siblings forever too. Everything they knew also changed forever too.
Please take time to focus on the sibling(s) like you focus on your CHD baby. Imagine being 4 1/2 and suddenly mommy is never home, you think your little sister died and Mommy never picks you up from school anymore. The fear of not being able to trust mommy any more because she is always gone. When you are able to spend time with the siblings they are scared you will leave and not come back. I know it changed Madelynn's sister, forever.
The first night I was able sleep at home after Madelynn's surgery her siblings would not leave my side. They sat on my lap or so close to me they should have been in my lap. They begged me to sleep with me in my bed. Being questioned by a young sibling, questions your aren't prepared to answer. How do you assure a sibling their sister is still alive but you can not see her.
It is so many emotions for both the parents and the siblings. One of the things we changed about our family and made a new normal was birthdays. If it is your birthday you get to choose whether you celebrate with everyone or a night out with just Mommy and Daddy. One year my oldest child (not a CHD'er) decided she would not share Mommy and Daddy for her Birthday. Mommy and Daddy took her roller skating, shopping and dinner.
It was GREAT therapy for Mommy, Daddy and sibling. We continue to offer it today. The children are all so close they would all rather be together most of the time. I believe as the children grow and mature a Birthday with just Mom and Dad will be appealing again. As you go about this week please remember our Heart Warriors and all they go through, but don't neglect the siblings and how they are a warrior of a different kind.
Love you all.
TTFN~
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