I am writing to share some hard and heavy news we received a couple of weeks ago now. It’s taken me a bit to even think about sitting down and writing this. Because my heart is grieving and sometimes it’s hard to get through even the simple daily tasks.
Most of you know we are expecting our 6th child in May. And while it took some processing, “6 kids!!” We were excited. And as I entered the second trimester and started to feel better. That excitement just kept growing.
But just as our excitement was growing, the wind has been knocked out of our sails.
I went in some weeks ago now for my first ultra sound and blood test. And the results were that my little one has Trisomy 18.
I had never heard of Trisomy 18 until now. Trisomy 18 is a genetic mutation, a chromosome abnormality, where a person has 3 chromosome 18s instead of only the two you’re supposed to have. And that slight imbalance, that one extra chromosome, affects almost everything with the baby’s development. It causes extreme birth defects, including, but not limited to, key organs, like the brain, heart and kidneys.
It is very fatal.
95% of babies that are born with this pass away within the 1styear of life. And most babies do not even make it full term, passing away in utero. A lot of babies that are conceived with this chromosome abnormality are often miscarried in the first trimester.
We’ve been informed it’s totally random. It’s not something that is hereditary. There is no one to blame. I didn’t eat bad romaine lettuce and Daniel didn’t eat too much raw cookie dough. Its super unlikely to have this happen.
It’s like winning the bad lottery.
We hoped that this would be a mistake, a false positive. But when the blood test was compared to the ultrasound findings the diagnosis was confirmed. This past week we went in for a second ultrasound, and the doctor said they could see the cysts forming in the brain of our little baby.
Receiving the news that unless God starts knitting differently in my womb we are going to have to say goodbye to this little one has been heartbreaking. This is never a road I anticipated walking. The unknowns and the questions, mixed with the reality of the diagnosis can make the walk overwhelming, scary and debilitating.
How do you prepare for a birth and a funeral at the same time?
News like this clouds most thoughts through the day. And some moments I’m grieving, and some moments I am filled with God’s peace, and some moments I have no choice but to laugh at my boys and their silliness or funny comments, and then I’m back to crying.
I am grieving, but I am not grieving without hope.
Weather the Lord decides to make this little one whole and healed in heaven or decides to heal this one for life here on earth, I know with certainty that this little one is in the Lords hands. And for that matter so am I and my family.
Processing through this has just highlighted so much to me the brokenness of the world we live in. This is not punishment for Daniel and I or this baby. This is not “fair” or how things are supposed to be.
This happened because you and I live in a world that is broken. Broken by sin.
Ever since sin entered the world at the time of the fall with Adam and Eve, the world has had a sin condition which has resulted in separation from God, and things falling apart. God created the world, He said it was good, and then we got involved and corrupted the whole thing with our sin.
Sin is trisomy 18. Sin corrupts this world with defects, just as Trisomy 18 is corrupting my beautiful little baby with defects.
And so, this world is broken and filled with hurt and I am reeling from the consequences of that right now.
However, as Christmas approaches and we think of this season that is, or should be, filled with joy, I can’t help but be reminded of why we are filled with joy. It’s not the food, or the presents or even spending time with family and friends. All of that is wonderful and joyful. But the real reason we can have joy in this season is because Christ came.
Christ came and walked the hard road to the cross and took our sin, shame and brokenness so that we can have forgiveness and reconciliation in Christ. So that He can restore and make things new.
Christ came to make things right, Christ came to restore our relationship with Him and the Heavenly Father. Christ came to heal our brokenness and hurts, and to make us whole. Christ came so that we don’t have to bear the weight of our burdens and sin. Christ came so that some day we will live with Him, where there is no more death and no more sorrow, no more trisomy 18, and He will wipe away the tears from our eyes. And things will be as they should be.
Christ came and walked the hard road to the cross, so that I can walk this hard road now with hope and His peace.
Because of the gospel I can praise the Lord in my grief. Because of the gospel I can say that God is good. Because of the gospel I have hope and assurance in my sorrow. Because of the gospel I can have peace in the storm.
14 “Let not your hearts be troubled. Believe in God; believe also in me. 2 In my Father’s house are many rooms. If it were not so, would I have told you that I go to prepare a place for you? 3 And if I go and prepare a place for you, I will come again and will take you to myself, that where I am you may be also. 4 And you know the way to where I am going.” 5 Thomas said to him, “Lord, we do not know where you are going. How can we know the way?” 6 Jesus said to him, “I am the way, and the truth, and the life. No one comes to the Father except through me. 7 If you had known me, you would have known my Father also. From now on you do know him and have seen him.”
We have shared with the kids about the baby and the situation. They are sad. Silas’s response to the news “But Mommy, I wanted to play with this baby!” Me too Silas, me too. But they are doing well. And looking forward to Christmas.
I will try to be open about this hard journey we are walking right now. I’m not sure how long or short it will be.
When I feel like it and when I don’t feel like it, God is right here with me.
We covet your prayers through this time. And are thankful for all your encouragement.