When Casey was born in 2006, we were told she would not survive the night. One night turned into two, and each day we were told it may and would likely be our last.
After Casey made it past one month, the NICU staff were all left scratching their heads and without any real answers for us. All they could tell us was that we were on borrowed time. Casey had already far surpassed the time they expected her to have.
When we finally took her home for the first time, around 2 months old, we were told she would never see her first birthday. She did see her first, and many more after. We were always very aware that our time with her would eventually run out. But we did our best to prepare for that day and to make the most out of the days that we did have.
No matter what anyone tells you, you can never be prepared to lose a child. And if you do lose a child, you will never be the same. You will never get over it. You will go on, and you will find a way to live, but there will always be a part of you that is broken or missing.
On days when I feel more broken than others, or sometimes on just random days, Casey finds ways to send me little signs. Some days I get a lot of signs in one day. Sometimes, I get signs every day for days on end. Other times, I may not get a sign for a long period of time. I never know when they will show up, but I am always happy to see them.
I have talked with many other mothers who have lost a child. They see signs from their child as well. It seems that we all have something specific that we know is from our child.
For me, it's butterflies or elephants. For another mom I know, it's rainbows, and for another, foxes.
Sometimes it will be a song that comes on at just the right time. The other day I was in my car and I had just parked to go in and share Casey’s story. I was really missing Casey a lot and having a rough morning. Just as I put the car in park, "Over the Rainbow" by Iz came on the radio. This was one of Casey’s favorites. I knew it was her way of letting me know she was with me. The rest of my day went much better.
If you have lost a child or know someone who has, this information may help.
Over the years, parents of children with disabilities and special health care needs have told us many stories about dealing with bias, unfairness, racism, ableism or discrimination against their child.
Categories: Family Support
As the parent of a child with mild Cerebral Palsy, I learned that the word “hurry” doesn’t apply to my son, Jason. With motor planning difficulties, hurrying just wasn’t something he could do. I learned to adapt and accommodate our schedule to allow extra time. However, when I found myself in the situation of caring for elderly parents & parents-in-law, and our son, I struggled to find the patience I once had with Jason.
Categories: Family Support