I have two children. Mary Ann is four years old and William will be two in May. Raising my kids is obviously the hardest and most joyful part of my life. There are so many things I want for my children. Most of all I want them to be happy and healthy. I also want them to be kind, educated, confident, and resilient.
Resilient? I feel like that’s not a common trait parents wish for in their children but bear with me. Life is hard. We all know that. We all have hard times in life and I believe that how you handle those situations is part of how our character is developed. My upcoming heart transplant is one of those situations and it’s not only impacting me, but my whole family.
My main focus is to ensure that this time in our lives positively impacts my children. Will is the easiest. For him I found that routine was going to be important. He also needs to have consistent loving faces that he trusts for the times when Dan and I can’t be there. Right after Christmas I started making sure that Will had frequent, part-time, daycare. Using the daycare that is located in the same building as Mary Ann’s preschool makes pick up and drop off easy for me. The other benefit of this particular location is that Will gets to see familiar faces while he’s at school.
Mary Ann is a little bit trickier. She is very aware of my situation and like to be included. She enjoys going to the doctors office with me and helping change my PICC line at home. We want to make sure she has the appropriate amount of information for a four year old. My fear was that they would call me in the middle of the night and she would wake up with no parents at home. For that I wrote her a small book. It had one line on each page and went something like this.
This is Mary Ann and her mommy.
Mary Ann’s mommy needs a new heart.
Late at night the phone rings. It’s time for mommy to get her new heart.
Before she leaves she kisses Mary Ann and Will.
When Mary Ann wakes up, Mommy and Daddy aren’t there but someone who loves her is here to play.
Mommy is at the hospital doing great.
Mary Ann will get to see her soon.
This book was super simple. I added pictures of Mary Ann and me. I also added pictures of the people that might be staying with her. She loves the book and can “read” it back to me.
The important thing to remember is that kids won’t entirely grasp the gravity of a situation. They may not think this situation is scary unless you let them know they should scared. For now I have this “swan” in my neck. Before we brought Mary Ann to the hospital we got on FaceTime and showed it to her. We were a little silly and explained to her that it does not hurt mommy. Then we said, “Mary Ann, what do you think?” She replied, “Mom, that’s just weird.” Done. Discussion over. When she came to the hospital she asked to touch it. Now she barely notices it’s there until she wants to explain it to a new visitor. We try to keep Mary Ann’s schedule as consistent as we can and get her to the hospital frequently.
While I am in the hospital, Mary Ann and I have a super secret notebook! She started by writing me a note with a picture in the book. Then whoever comes to visit me brings it down. I write my note and send it back.
Mary Ann knows that her mommy needs a new heart. She doesn’t know how serious that is or that transplanting a heart is a big deal. This summer we took her to the transplant picnic to meet hundreds of other people who have had heart transplants. On a smaller scale she’s met my friend Sadie and her kids. Sadie just transplanted this past July. Mary Ann will say, “My mom’s getting a new heart just like Sadie.”
I want to be honest with Mary Ann in a way that is appropriate for a four year old. I believe that keeping secrets won’t get us anywhere positive. The trick is to let the kids take the lead and answer their questions. If you are not sure of the answer right away feel free to say, “What do you think?” and let them babble a little longer while you try to come up with an answer. Whatever you do, make sure everyone is on the same page and presenting a united front to your kids so they feel confident and safe. Situations like this are hard no matter what. I think dealing with them honestly helps to make your children stronger and more resilient.
Since I’ve been in the hospital, my mom and in-laws have been here helping with my kids. This makes it so much easier for me to be in the hospital! My kids are happy to have family around and I don’t worry about them as much knowing my family is taking care of them.
Now for a little update. I’ve been in the hospital a week. To reduce the risk of infection my doctors have decided to take the swan out of my neck and place a subclavian balloon pump. The balloon pump will reduce the amount of work my heart will be doing. They will most likely keep it in place until I get my new heart. If my heart comes tonight then I would get to skip it (fingers crossed).
Thank you all for the prayers, love and support. I can’t wait to be on the other side of this journey. While there are parts of it that are hard for me and I certainly don’t enjoy I know that I am a stronger woman because of what I have been though. I share my story so that we can make more woman aware of heart disease. Heart disease will kill one in three women. It won’t be me.
Courage, dear heart. ~ C.S.Lewis.