There is a moment.
That moment when the world feels like it is crashing down on your shoulders.
That moment when you are sure you are alone, no matter how many people are around you right then.
That moment when God feels so far away but you have nowhere to turn, nowhere else to go.
So you pray. But, deep in your heart are the doubts that this prayer (or any, really) is reaching God. That He even cares. The lies Satan is whispering have taken root and are spreading.
And, we hurt. Because that moment is pain. It is deep, unrelenting, excruciating pain. When all we can scream is WHY?! Why me? Why now?
This story is indirectly related to why we later homeschooled the boys, but that is not why I am starting here. Somewhere out there somebody needs to hear that God is there, even when we can’t feel Him. That our prayers are not going into thin air. That we can trust Him, even when His answer isn’t to turn back time and somehow make the bad news, in this case the diagnosis, go away.
The date was April 1, 1997. My husband was 27, I was 24. We only had two kids at the time: a 26-month-old easy-going, talkative son (Alex), and our 10.5-month-old daughter (Angela). Because Angela was our second child, her doctor, Tim, and I noticed some red flags in her development. For example, she only weighed 14 lbs 9 oz, and was about 20 inches long (a nine-pound weight gain and only about two inches in length in 10 months). She was tiny and not growing well. She also couldn’t sit up, roll over, hold her head up, or interact with us; she choked on all solids, and she didn’t really play with toys. And, as a mom I knew, absolutely knew, there was something wrong. (Of course there were other things as well, but you get the idea.)
So her doctor referred us to Children’s Hospital in Seattle. They sent us a schedule that had us in appointments from 9 a.m. to 4 p.m. First on the list was aptitude testing, so they could get a baseline, as well as a variety of other tests throughout the day.
After being told Angela was 57% behind other kids her age, I was already feeling … lost. But, we had yet to see a doctor. So, the second appointment was with a geneticist. She walked into the room, introduced herself, and then asked us three questions. Just that. Three. Questions. She then left the room and came back less than 10 minutes later with a book. And a diagnosis.
It was that moment.
Because feeling something in your heart and being told something concrete, with proof, are two completely different things.
Now, I am not going to tell you that getting the diagnosis that your daughter has a permanent disability is the hardest news ever. Because it isn’t. After all, we could have been told so many other things. However, it was devastating and the loss of a dream.
By 3 p.m. that day, I had a raging headache and felt dazed. Too much information, too many tests, too much emotion. Honestly, it was just too much everything. And the emotional pain, I cannot describe the pain – or the guilt that seemed to come from it. Could I have done anything differently? Did I have caffeine, not get enough water, not eat enough? What did I do wrong? The moms out there know this guilt. It’s called Mom guilt, and I can tell you from years of experience, it’s a useless emotion that Satan uses to derail us.
Angela was diagnosed with Cornelia de Lange Syndrome (CdLS for short). This can be genetic; however, after blood testing it was concluded that hers was a mutation that occurred at conception. There was quite literally nothing we could have done differently. At the time of her diagnosis, there were 2,500 cases known worldwide (there are now more than 2,500 people in my Facebook group alone), and they didn’t yet know which gene or chromosomes were involved. There is a lot of information about those afflicted with this syndrome at www.cdls-usa.org since I could fill pages and pages with just details about it. I will also be sharing more about exactly how the syndrome has affected our lives and her medical, physical, and intellectual challenges in my next blog post.
And, that was just the beginning. She had more tests added to the schedule that day and over the next few days. Then, her first surgery was just 16 days after that. We went from thinking we had two healthy kids, to one healthy son and a daughter with needs we were only beginning to understand (and still struggle with, if you want the truth).
In that moment (and many others) I related to Job when he said, “I cry to you, O God, but you don’t answer. I stand before you, but you don’t even look,” Job 30:20. I felt so alone in my grief, anger, and pain. But, just like Job, I wasn’t going through it alone. God was there the whole time. Jeremiah reminds us in Lamentations 3:55-57, “But I called on your name, Lord from deep within the pit. You heard me when I cried ‘Listen to my pleading! Hear my cry for help!’ Yes, you came when I called; you told me, ‘Do not fear.’” Oh, thank YOU, Lord! You are there, even when we cannot feel You. You have not left us or forsaken us. There is a relief in that thought, isn’t there?
However, as you all know, prayer is hardest when your faith is weak. And, the devil strikes then! The deceiver wants us to feel alone in our pain. Have you ever felt that your prayer isn’t going past the ceiling? In a recent discussion about prayer, someone mentioned that David said in Psalm 23:4, “Even when I walk through the darkest valley, I will not be afraid; for you are close beside me. Your rod and staff protect and comfort me” (emphasis mine). What a comforting thought!! “God is right there with us,” my friend said, “listening to every word we say.” We don’t have to worry about the prayers not going past the ceiling, He is sitting with us in that moment!
I won’t lie to you and say that feeling of being alone went away quickly. It didn’t. I won’t tell you I felt God’s arms around me in that moment. I didn’t. I will tell you I did slowly start to feel less alone and could eventually feel Jesus holding me as I cried, raged, and screamed out my pain. And, I did keep my faith, even if I was hanging on with torn fingernails.
And, He is right beside you in that moment, and the next, and the one after that. Let me say that again: JESUS IS SITTING WITH YOU RIGHT NOW! The pain and anger may keep you from feeling Him, but turn to Him anyway. Our Lord is waiting with open arms, a big lap, and strong shoulders to cry on. Let Him comfort and heal you. No, it’s not an easy process, but it is worth it.
There is so much more to tell you (and look how long this one was!) that I have to make this a two- or three-part series. So, watch for my next blog to hear more about Angela, her diagnosis, learning to cope, and learning to trust God with all of it. For now, I leave you with this thought:
Lamentations 3:20-24 (NLT)
20 I will never forget this awful time,
as I grieve over my loss.
21 Yet I still dare to hope
when I remember this:
22 The faithful love of the Lord never ends![a]
His mercies never cease.
23 Great is his faithfulness;
his mercies begin afresh each morning.
24 I say to myself, “The Lord is my inheritance;
therefore, I will hope in him!”