Lessons Learned

I read about a new mother in a support page who is expected to have a Trisomy 13 baby in a few months and relived our process in a flash while typing out some small advice for her this weekend. Last week a very close friend of mine – one I consider family – told me about a choking episode his newborn had and how he felt it scared him that it could have been so close to a situation like mine. This morning I read about a family very close to my extended family who just lost their daughter. These things happen every day to families the world over, only we don’t realize it because it’s a topic that doesn’t make us feel fuzzy. It’s a dark reality that a huge community of people are a part of. There are always some things I that I hope people have the good fortune to learn when they start looking for support. Here are a few:

  • This is going to hurt. Like, forever. My son was born and called Home two months ago today and I’m crying right now as I right this. My parents grieve for their lost son after more than 33 years. It won’t get better, but it will get easier as you learn how to live with it. It will take you a while to learn what triggers you have and even longer to understand the impact those have over time, but it doesn’t diminish the love you have for your little one.
  • This does not make you less of a mother or father. Whether you lost your child in the first trimester or were fortunate enough to spend time together creating memories, you had a chance to bond with your child that no one else will ever be able to fully understand. Your parents are still grandparents, your siblings are still aunts and uncles. You are still a parent, they are still your child, and nothing can take that away.
  • There is no correct period of time that it takes to grieve something like this. Everyone reacts to loss differently and finds their own way to cope. After two months, I still go into Jonah’s room several times each week to say hi and feel closer to him. Men and women have their differences the same way that any two people would, and it’s perfectly fine to take time for yourself.
  • Serve the memory of your child. Lean into your spouse as you grieve and provide a safe place to cry or yell or just be quiet. Find something you love to do and incorporate them into it as you find that ‘new normal’. Take this horrible situation and turn it into something your child will look down on with pride.
  • People will sympathize with you and say things that won’t actually help, might even make it worse in that moment. It’s ok. This is a hard situation for everyone, and they’re doing their best to express how much they care for you and your family. This isn’t something you can understand without going through it, and it’s a hard place to be when the best thing you could say is ‘I’m sorry and I love you’. It won’t matter right now whether or not you can have other children or may already have them, but people will say it anyway. I still want my Jonah the same way you still want your child. Just know that they’re trying, and they love you.

It breaks my heart every time I find out someone else has joined this community. If you’re out there searching for something, look within yourself – you’re strong and capable. If you’re waiting to hear from someone, remember the love you had when you found out you were pregnant or got to experience their birth. That kind of love speaks louder than anyone’s voice ever could. You have the courage inside of you to confront each new day and whatever it brings, because you’ve now been through hell and are on your way back.

Love your child, love your spouse, love your family, and put one foot in front of the other.

You can do this

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