let it be yours.
After Max’s diagnosis I often found myself looking for someone on social media who related to me and our situation. Finding anyone and everyone who had experience with PVS or other moms who had heart babies. Often it was because I needed someone to show me that Max living with this disease was possible. For hope, similarity, and even for comparison. I would search and read others journey and either be grateful we weren’t in some of the situations that were definitely possible for us or feeling hopeful see where the place where others got to. Sometimes it felt selfish, to see how our diagnosis compared to others with similar and other times it made me at least feel a little less alone in a fight with a really sick little boy.
After Max passed I found myself doing the same thing. Only this time it was searching for different accounts. Those who have lost their babies, moms after loss, families experiencing grief. Instead of filling my page with kids fighting the fight, I’m filling it with those who no longer have to. For what its worth, both situations helped. It’s comforting knowing you aren’t walking alone, knowing there are people out there who have experienced or who are experiencing the things you are going through and have made it through. But one thing I have learned with this process, no matter how hard I search or how hard I try to find someone who has gone through exactly what I have – I am not going to find it. Everyone has their own story, every kid fights their own fight, and just like Max’s disease, no one story will ever be like the other.
Don’t get me wrong.. I still long to find those who resonate with me, those who have a little glimpse into the loss of a child, but I now know that even though our stories may be similar, they are not the same. Nobody’s story will be the same, not mine, not yours. So find those who connect to you, but don’t compare what your path looks like and don’t try to follow the others. Let your story write it self – let it be intentional, let it be authentic and let it be simply yours.. whatever it may be.
