“I think your husband has Vascular Ehlers-Danlos Syndrome,” said the Doctor as we were sitting in the ER. Greg was in extreme pain, and the scan results showed that his kidney was dying due to a dissection of his renal artery, which blocked off blood flow. As rare as vEDS is, some of my previous research had led me to learn a bit about it. I knew what it was, and I knew it wasn’t good. I went into shock, and was very close to passing out. Part of what caused the shock is that I knew vEDS is genetic. I knew my kids each had a 50% chance of having vEDS as well.
This was a lot to process at the same time. I think it’s accurate to say that I still haven’t completely processed it all. It is so much to deal with. Greg was in critical condition in the ICU for 13 days, which was enough to deal with all on its own. The reality that my husband has a life threatening condition has been a lot to deal with. But that is only the beginning of the story.
Through the following months, I had a lot of anxiety about which of my children have vEDS. I analyzed every facial feature, looked at their veins, checked their joints for hypermobility. Not knowing was its own kind of torture! The questions that went through my mind were difficult. What if all of my kids have vEDS? What if I have to bury ALL of my babies? Even burying one of my babies seems unbearable. No mother should have to outlive her child. Do I get grandkids? Will my children have the opportunity to get married and have children of their own? Will this ruin their lives? Will I be raising my grandkids and burying them as well? And on and on.
Nine months after Greg’s hospitalization, we felt that it was time to have our children tested. It was time to know. We have always been fairly open with our kids about what is going on, and they all knew that they had a 50/50 chance of having vEDS. They all knew what they were being tested for. It was a stressful time for our entire family. The anticipation was difficult. We had scheduled an appointment with just Greg and me to meet with the geneticist afterwards for results, but a week before the scheduled appointment, the Doctor called. He said he had the results and wanted to know if we wanted to know them. I felt shocky again just like that day in the ER. My heart started racing. I didn’t know if I was ready to know. How could I bear this? We decided to get the results right then. He told us that 3 of our children tested positive and 3 tested negative. I have to admit that my first reaction was relief. I was so relieved that some of my children do not have vEDS. I was so afraid they all had it. Knowing that half of my kids have vEDS has been hard to deal with, but the knowledge has been easier than the anticipation and wondering was.
How has this news changed my parenting? I can honestly say it hasn’t. Of course, I am more watchful for certain things with my kids who have vEDS. They take certain precautions, and I am definitely more likely to take any injury they have seriously. Otherwise, I feel I am the same mom to them that I was before the knowledge of vEDS. I feel that I have been prepared for this through other parenting experiences that I will go into more detail on in another blog post.
How have we dealt with the fact that our kids have a hard life reality? How have we helped our children during this difficult time? We have been honest with them (age appropriately). We have been there with love and support and validation. We will go into more detail on how we told our kids at a later time. I have noticed that as parents we naturally want to bail our kids out of hard things. We sometimes take it upon ourselves to make sure our kids don’t have any struggles. I know that has been my tendency in the past. When my kids had hurt feelings, I would have hurt feelings for them. I would do my best to make it better. If they forgot their lunch, I would rush it to them. The question I have learned to ask is, Why? Why do I want to jump in and save them? It is usually because their discomfort makes me feel uncomfortable. It is really kind of selfish. If they are hurt, it hurts me, so I want to make it better. Notice that most of my heart wrenching questions above were about me. We of course want our kids to have a fulfilling and joyful life. We want the best for them in every way. But I believe that usually the reason we want save our kids from heartache and trial is because it is uncomfortable for us to see them go through hard things or make mistakes.
In the past few years, I have had a new outlook on parenting. My job is to love my children, nurture them, and teach them the things they need to know to make it through the hard things in life. In the LDS church we believe that we came to this Earth to be tested and tried so we can gain experience, and if worthy, return to live with Heavenly Father again. We signed up for this. We all came to this Earth to go through hard things. Our children are included in this. It doesn’t help them when we try to take their trials away. These are the things that will help them grow and develop great qualities. These are their ‘classes’ in life. We can’t take classes for our kids and expect them to pass.
As painful as it is for me as the mom to watch my kids deal with some extremely hard things, I have learned that it doesn’t help for me to take on their pain or trial in any way. Not physically, and not emotionally. It actually makes it worse. I had a great mentor teach me through example that the best things I can do to help my kids when they are having a hard time is to:
- Listen. Truly listen. Let them tell me how they feel and just listen.
- Validate. It helps so much to be validated! Sometimes all I need is to have someone say, “Wow, that’s hard!”, or “I bet that really hurts”. It doesn’t help much when someone tries to tell me why I shouldn’t feel that way. This is the same for my kids, or for anyone.
- Love. Love is so powerful. If instead of trying to take away my children’s pain I can just feel love for them, it changes everything. It takes away the need for me to fix things. It helps my children to know they can come to me when they are having a hard time, and they will be loved no matter what.
The kids all know whether they have vEDS or not. That has been some hard news for some of them. Very hard. We did our best to prepare them beforehand, and they continue to receive professional support as needed. But, I don’t feel like this news has changed much about our family dynamics. We are still the same people with the same strengths and weaknesses. I am grateful for the parenting lessons I have learned to this point. I feel that I have been prepared for this.
My challenge for you is to become more aware of your tendencies as parents. Do you tend to try to run in and save your children? If so, ask yourself why. Is it to relieve your own discomfort? Try to listen, validate, and love, and see how it changes your relationships. It has made parenting so much easier for me.