Support. It is such an important thing. Over the years I have been able to seek support from friends and family. But there’s a type of support that doesn’t usually come from those we are close to. It often can’t.
In some situations we need support from those who have been there. Those who can say “I get it”. “I know how it feels”. Sure, they may not know EXACTLY how we feel inside (no one truly can). But those people who have walked the same path as us understand in a different way than others can.
Shortly after Gabe was born I found a great group full of people whose children also had Truncus Arteriosus. It was such a blessing to have this group of people who all understood. Those people could say they had been through it and could offer their wisdom and advice. And perhaps the most important thing was that they could say that despite the hard times their children were still there, still thriving. That encouragement was priceless during some very uncertain times.
Later on when my youngest son was diagnosed with a neurological disorder called a Chiari Malformation, I sought out more support. I found other parents who were able to give advice on tests and specialists. It was wonderful to have that support so I wasn’t entering yet another world of medical complexity alone.
When Gabe died support became even more critical. Death of a child is brutal. Death is brutal, but losing my child who was there every day was a particularly difficult pain. I needed to talk to others who had been through it and were still thriving. I needed to see that although I felt like an emotional basket case I would not always feel like an emotional basket case. I needed reassurance that the hard days wouldn’t always be so hard. Reassurance that the constant sadness would one day be less constant, and reassurance that eventually happiness would come again.
Now I’m going through this new struggle and I’m needing support. Thankfully I have found it in the form of a great counselor, a friend who is going through it, and a face to face support group of others in the same boat. This newest struggle is hard. I had someone by my side to get through the other struggles and that person is no longer here. So I will rely on others- those going through it and those who have been there. Those people will reassure me, just like after Gabe’s death. They will reassure me that one day the hard days won’t be so hard, the constant sadness will one day be less constant, and that eventually happiness will come again.
What I Can't Control 