It’s a strange time in my life right now. Relationships are dissolving with people I never would have expected and others are having a large role in building me back up after losing Jonah that seem to have come out of thin air. Several Trisomy children have been called Home in the last few weeks and I have multiple friends having children this season. And most strange to me, this day – November 30th, 2016 – that Jonah has officially been gone longer than he was with us. He was born at 36 weeks and six days, which was exactly 37 weeks ago today… I don’t quite know what to do with that, but it hurts just as much as it did the day he was born. I’ve been described as ‘simmering under the surface’ by my mother for quite a while now, never really settling in to what this new normal means. I know it takes time, but there are so many things I wish I had insight to when this journey began with Luke almost two years ago. The things I’m laying out below are for others who have joined me as parents to children they cannot hold, but also as a window into a world you only truly understand by entering. Please tread lightly.
First, people will say things with the best of intentions that are hurtful to us on the other side. ‘You’re still young’ and ‘It just wasn’t the right time’ are the two I heard the most, but there are a million responses out there. Part of it is education – there is no right thing to say but there are a few that should never be said – but the other part is intent. Remember that they are words of heart, not hurt. They care about you and want to help.
The second most important thing I have found in almost fatherhood is to find something that you can come back to. Losing Luke at sixteen weeks was hard because we only had so much time to know him (or her – we didn’t make it far enough to find out). At the time we lost him Cassy’s small group was using numbers from receipts to look up verses in the Bible, so I took the date we found out – February 6th – and plugged it into my app. Luke 2:6 happened to be one of the passages about the birth of Jesus, and I started referring to our baby as Luke. Using this for both of our children has made a huge difference in my life afterwards. For some people that means doing something that reminds you of them like writing, running, or volunteering, while others have something physical that they can grab and hold when they need to. But finding something to come back to can be the difference between finding yourself in the dark or reaching out only to grasp at air.
Third, understand that some questions will always mean something else to you now. For example, “Do you have children” is always an awkward question to answer. Saying ‘no’ feels like I’m denying our children but answering the other way invites questions about them and stories from the person asking. I’ve seen in many places where the parent says something along the lines of “I have two children, but none at home”. I have personally taken to just saying ‘It’s complicated’ since that tends to get funny looks but less inquiry. You’ll find your comfort zone, but it will always sting.
Fourth, is lean-in. Lean in to your spouse – they hurt just as you do and something like this will either rip you apart or sew you closer together. Listen to each other without trying to fix it, and understand what is in their heart at a time like this. You have the opportunity to know each other so deep in a way you never would have if it weren’t for your child, and that doesn’t change after a loss. Lean in to your faith – it took me six months after losing Luke to sit through my first sermon without losing it, but hearing the Good Word was something my soul needed even when my heart couldn’t focus. I’m still working towards that after losing Jonah, but I listen to sermons online and have my working-prayer time to lean on. And lean in to your family. This loss is every bit about both parents losing the chance at a life with this child regardless of if it is your first or fifth, but it also effects grandparents, siblings, aunts, uncles, and other people in your life who care. One of the greatest things you can do in this loss is acknowledge that we all hurt together, and the biggest impact I’ve felt is having the community around me acknowledge Jonah in some way. So take this opportunity to let your child bring you closer together and honor their love with your own.
Lastly I need to make an important point – take time for yourself. After losing Luke we stayed in our house for two solid weeks before starting to go back out because we were afraid of running into someone or seeing all of the people who got to enjoy the things we just had taken away. Whatever amount of time you need to grieve is ok and however you feel the need to express it is what it takes to find some level of peace, but know that this is a dangerous place. Depression and isolation often go hand in hand, and it takes many times as long to come back out as it does to get there. Many loss parents who have been working through this for decades have told me that time doesn’t heal something like this, it just gives you a chance to learn to live with it. After these last eight and a half months I understand also that it’s hard to trust that we can move forward and live a happy life without forgetting them. Give yourself some grace in realizing that it’s ok to be happy again, however it comes.
This experience is a hard one to navigate, but you are not alone – we are many. You are still loved. You are still worthy. You are still Mom, and you are still Dad.