You are not alone. There is a tribe of us, willing and waiting to take you under our wings. To help you navigate this scary, new and ever-changing world. We don’t understand exactly how you feel, but we can relate pretty well.
This isn’t on you. You didn’t cause this. You are not to blame for your child’s condition or any complications that arise from it. If you are trying your best, that’s all anyone can ask for.
Don’t be afraid to advocate. You are your child’s voice and you know them best. Ask questions. Sometimes you will feel stupid asking questions, especially if you’ve asked them before, but that’s ok. You’re smart for asking again. It helps you try to understand. Don’t leave till you are comfortable leaving, knowing that you understand what’s going on.
Every child is different. There is so much value in connecting with other Heart Families, but you also need to remember that every child’s journey looks different. You can have 2 kids with the same diagnosis take totally different paths. This makes us hopeful yet scared at the same time because your child has the opportunity to defy the odds, while at the same time having no idea what odds they will end up needing to defy. Draw hope from the good stories, and be a shoulder to lean on for the bad ones. You will see both. In the same day, sometimes for the same child.
Take it one day at a time. Or one hour at a time if you need to. Tackle challenges as they come up. We need to keep longer-term goals in mind too, but focusing on the day to day will help. Help to not get too overwhelmed all the time. Help to get things done, one task at a time. Celebrate wins. Even small ones. They matter and will be part of your lifeline when things are tough. Thinking too far ahead too often will make you miss the here and now, and being present and enjoying those is crucial.
You are stronger than you think. You’ve got this. Trust me. Days will come where you won’t feel strong, or brave, or capable of dealing with this. But you are. It’s okay to be sad, depressed, angry, frustrated or whatever you’re feeling. It’s okay to feel those all on the same day or the same hour. That does make you weak, it makes you human. This is your child, your baby. Emotions will come and some days they will flood in unexpected and fast. It’s okay to smile, laugh, feel joy even on the scariest days. Don’t feel guilty. Our kids have an incredible gift of sparking joy. Your support system is allowed to make you feel moments of joy.
You’ve got this. Never forget that. Some days you won’t feel like it, and it will feel like your entire world is falling to pieces around you, but. YOU. CAN. DO. THIS.
Love, a Fellow Medical Mom