At 5 weeks postpartum, we are finally getting settled into who our new girl may be. Calm and fiesty and an observer and lover of people. We’ve experienced enough of life with two littles that I now feel qualified, caffeinated, and rested enough to continue documenting our journey.
First of all, I am humbled by the parents who have started following or reached out through Instagram or other mutual friends. My blogging is never for the purpose of keeping an online diary (My journal, my husband and Jesus get to process my raw thoughts. Lord help them all. Lord help, the Lord?) And it’s not my personal cry for help (I’ve got some friends and family who have the obligation of watching me ugly cry 😆) But I keep writing in hopes that even one person on the journey of disappointment or special needs will know they’re not alone. So to know that people are finding our story and getting encouragement from it is what it’s allllll about for me and our family!
Our oldest daughter Jane has a complex form of epilepsy, most closely resembling Lennox-Gastaut syndrome. It’s not easy to manage and it morphs into all different kinds of seizures, requiring many medications. In addition she has diagnosed encephalopathy. Which basically means her brain is going haywire all the time. Every day has lots of brain “hiccups”, twitches, spasms, and when we are not so lucky, tonic seizures that freeze her whole body and potentially steal her developmental progress. And for all the inquiring minds, marijuana is not a good fit for her type of epilepsy. Not that anyone has ever asked us about that…
Jane was not born with epilepsy, but acquired it due to a blood sugar incident at 3 days old and mismanagement of medications. Jane was a completely healthy baby in utero and was sent home from her natural hospital birth with a clean bill of health. So when people would ask us about how my second pregnancy was going with concern in their eyes, we would politely answer “Good!”, knowing full well that it wasn’t the pregnancy to be concerned about, it was the hours, days, and months postpartum to watch out for.
This knowledge of what had happened to our first, while experiencing the new life of our second is a tension that we face every day as the parents of a child with special needs, and one without.
It happened only minutes after Haven was born. She looked just like her sister and the same midwife who delivered Jane delivered Haven. The same postnatal Doctor examined me then as he did 2 yrs prior and although Haven was born in a flash and I was told I was “made to have babies”, instant grief to relive, or get back the first moments of Jane’s life set in. The same feelings occurred when we were home with Haven and my mom and I watched Haven gaze out the open living room window, her little mind perfectly aware and her eyesight intact. Such joy mixed with tears of grief since at 7 months old our oldest daughter had experienced such traumatic seizures due to misdiagnosis and incorrect medications that the part of her brain controlling eyesight was for all intensive purposes, erased.
Never before had we experienced such a miriad of emotions. “Redemption” used to be such a positive word but now every time something was “redeemed”, it also pointed to how something was previously lost, and thus, worth redeeming.
But for every milestone we come up against, familiar appointments, faces, or accomplishments, what can be more challenging than facing the grief is allowing ourselves to completely rejoice. In the words of a close friend after my 38 wk appointment with Haven, an appointment that had gone so differently with Jane,
“Breathe in each step in this process of redemption. It’s hard. It brings new grief. But it’s right and it’s what is yours.”
And then I said, “Well put”
And then she said, “I love you”
And it was totally beautiful and it all happened over text message as most meaningful conversations do.
The point is that even in the tension of a disappointing journey that is not over, it is ok to sit back and expect things to go WELL. To expect HEALTH. To laugh when something is happy and clap when an obstacle is overcome. There is a time for mourning but there is a time for dancing. Sometimes the two are separated by days and years, but sometimes they occur simultaneously and you learn to dance through tears and rejoice through sorrow. The victories are that much sweeter and the process is that much richer. It’s a tension not easily managed, but it’s where we’re at and thanks to both of our beautiful, silly girls, we’re getting better at the laughing.
For everything there is a season, a time for every activity under Heaven. A time to be born and a time to die. A time to plant and a time to harvest. A time to kill and a time to heal. A time to tear down and a time to build up. A time to cry and a time to laugh. A time to grieve and a time to dance. Ecclesiastes 3:1