Unknown
For the most part my life has played out pretty much according to plan. Even if it wasn’t planned, I can’t say it has been unexpected. As I get older the more and more I realize that this is a blessing I never knew to count. There were no surprises in the stability of my home life. My parents have always cared deeply for each other and loved on their six kids with care for each of us individually. I always had clothes, and even though I joke about having a lot of hand-me-downs, I also had a lot of new clothes to wear. I never once questioned where other needs like food or shelter would come from. Even beyond these basic necessities that I was so blessed to be oblivious to the fact that they are not a given for everyone, my life folded out naturally and easily and with a lot of goodness.
The first real experience that rocked my world, seeming to come from no where, was death. I have now lost several family members, some very tragically, and some as a relief from bodies worn down in old age. I miss them terribly. Loss is hard. Grief can be overwhelming and sneak up on you when you least expect it. Not knowing what life will look like without someone is even more difficult.
It is unknown.
That is what I am struggling with now. The unknown. If you haven’t read my previous post, here is a quick synopsis: I have received a prenatal diagnosis for Down Syndrome with my second child, Ben, and his heart is growing with an AVSD.
I do not personally know a single person with Down Syndrome. All I know is the sweet ads that I have seen run on TV featuring a person with DS (I realize this is a new privilege that I even have this exposure) or the Instagram account I have followed for the past 5 years called The Lucky Few, previously @macymakesmyday, because she did just that. Macy would make my day with a cute face or dancing at her hip hop class. But I would leave it at that. A smile, and then click my phone off and forget all about anyone in the world of Down Syndrome.
I haven’t had a friend I can turn to, and say, “You have been through this, what is next for me?” Being in an unknown space, where you don’t know even where to start to find resources to reach out to is incredibly isolating. A silver lining I am seeing in this is that I have 5 months to prepare. I have been so blessed to have family and friends who just let me talk.
They let me process.
I received the first “DS is a possibility” message from my doctor 10 weeks ago, and after follow up tests, have received the “We are almost certain he has DS” message 3 weeks ago. It is new and fresh, and I have finally gotten to the place where I am giving myself grace for that. It has been my reaction to try to put on a brave face for my family and say I was fine and that I am just taking it one day at a time. My insides were writhing in fear and anxiety of not knowing what the heck my life was about to look like. Here are a few of the things I have heard when sharing our diagnosis:
“Oh, I can’t imagine.”
”Well, I can’t imagine better parents for a child like that.”
“We will love him no matter what.”
When we found out we were pregnant with Gennie, I was scared, we weren’t trying and I just was not sure I was ready to be a parent yet. That fear pales in comparison to my fear of what parenting Ben will look like, and we were trying to have a baby this time! It seems silly to me that I would be trying to have another child, but only one that I have special ordered exactly perfect from God.
All of these things that I had been feeling and not expressing came crashing down last week. I got in touch with another mom that I have come to know through Instagram. @acefaceismyfriend or Micha Boyett is actually from my hometown as well and I have known her family for a long time, but not her personally. Almost 4 years ago, she received her prenatal diagnosis that her son Ace, would be born with Down Syndrome. Last week I stumbled my way through her old blog posts and found some things she had written about her experience in the early days of being Ace’s mom. It shook me, because this is what I had been looking for. A first hand account from a real mom, walking exactly where I am now. I will link a few of the best ones that have helped me work through my feelings here:
I sent her a message to thank her for the things she had written, and to my surprise she wrote back. Her message to me said, “I would love to chat with you more through this season. It’s so hard and the grief is real.” Waves of emotion swelled up in me and crashed through that wall I had built keeping my real emotions from penetrating my heart. Grief is what I had felt. I was grieving the loss of the son I had pictured in my head. I was sad that my day dreaming of what his life would be like and the kind of man he would become were smashed the day I heard the diagnosis. I was grieving, because the son of my imagination, was not my son at all.
All of the things people had been saying to me came from a place of love. I would say thank you, or just nod in agreement, but inside I was shouting, “But I don’t want this!” I don’t want Ben to have DS. I don’t want him or my family to have to experience these specific difficulties. I don’t want to have no idea what his life will look like. The next few days were hard, messy, and filled with allowing myself to just say out loud, all of the thoughts that I had been too ashamed of to say before.
“I don’t even know what to hope for Ben.”
“I don’t want Ben to have Down Syndrome.”
“I am really having a hard time with this, and don’t have any positive emotions about having another baby yet.”
My mom listened. My sisters listened. One of my dearest friends and a cousin listened. Cody listened. None of them tried to offer feedback or advice. They just sat with me in the gap of my sadness and listened. This has been the number one most freeing thing that I have ever experienced in my life. I allowed myself to acknowledge my fears and the unknown and then just rest.
It has allowed me to feel it, lay it down and let it go. I know I will still have hard days. Today is a hard day, but I can surrender those to the Lord. I can lay it all at His feet, say that I am unsure and allow Him to be all that I am not. I still have a long way to go in releasing it, and finding joy in this new life that is unexpected. But what a peace it brings to know that it is not by my strength or my ability that I can do any of it. It is God’s grace that allows me to live today, to have this breath, to write this blog, to pray for my sweet Ben, and to one day meet him. God’s grace will fill the spaces where I feel like I am lacking or unprepared.
His Grace is all I need.