Originally published on August 22, 2015 this post is such a good reminder to me. On days when things are hard and I can’t seem to find the good, I can look in the rear view mirror of the last three years and see the many and mighty ways God has worked in our lives.
I remember diagnosis day like it was yesterday. I remember anxiously sitting in a sterile NICU conference room listening to a geneticist tell me, “He may never walk, talk, or be able to live independently.” She went on to say that I would probably need a home health nurse to take a shower, curl my hair, and paint my nails.
My first thought was, I rarely curl my hair or paint my nails.
And then all at once: I will have an adult child living with me for the rest of my life. What will happen after my husband and I die? We have just burdened his brother with a huge responsibility. And how in the world will we ever afford all this?
It was too much to process. That doctor painted a very bleak picture for what life would be like for our then two-week old son. It was definitely my darkest day. We received a lot of information, but very little hope.
I wish I had known then what I know now.
I wish I had known that my friends would stick around.
After receiving our son’s diagnosis, I went into a season of deep grieving. Like Job, I feared that I would scare friends away with my intense emotions. I feared that people wouldn’t want to be around me because my child looked different, acted different, and needed A LOT of extra help.
When hard things happen, you learn about the substance of your friendships. You learn that some friends are able to handle strong emotions even in your darkest hours. These are the friends who,”Rejoice with those who rejoice, and weep with those who weep.” (Romans 12:15 NASB) Some friends have servant hearts and can meet your needs before you even know what you need. They do things like drop off meals and take care of your kids in a pinch.
By far the most amazing and mysterious thing happens when a Church family understands what Paul was talking about when he said “the members of the body which seem to be weaker are necessary.” (2 Cor 12: 22 NASB) My friends not only stuck around, they showed me the depth of the worth of my own son.
I wish I had known that anything becomes normal if you do it long enough.
Our son’s medical needs were consuming in the beginning. They still are, but I’ve figured out how to deal much better. Having no medical background I doubted my ability to care for him well once we left the hospital. Over time I have learned lots about feeding tubes, suction machines, medications, and catheters. I have researched my son’s affected body systems and can manage my way through a specialist appointment without feeling like I need a translator (most of the time).
By far the hardest symptom of my child’s diagnosis was that he could not eat without aspirating. The doctors put in a G-tube at five weeks old. I had never met anyone who ate with a feeding tube before. It didn’t seem normal to me. Initially, when we went out to eat I wanted to cover up his car seat and feeding pump bag in a dark corner of a restaurant. Now I am more confident in my ability to feed him just about anywhere. It may not be normal to others, but it has become normal to me.
I wish I had known that God abundantly provides.
I knew this in my head before my son was born. Now I know this in my heart. Jeremiah 33:3 NLT says, “Call to me and I will answer you and tell you great and unsearchable things you do not know.” I have witnessed God weave together a beautiful team of therapists to care for my son’s developmental delays. He put the right doctors to help guide us along a meandering path of medical mysteries. God has provided caregivers who truly love my child when I questioned whether or not I would get a break. And He has given us the finances to care for all of our son’s ongoing needs in unexpected ways.
I wish I had known that I would laugh again.
When I first learned about my son’s diagnosis I started Googling it like a crazy woman. I had to dig deep for the good stories, because nearly everything I read told the hard stuff. I imagined that I would be trapped away in my house with my son forever, truly turning into a crazy woman. There was nothing to laugh about in the life I saw when I looked around me and into the future.
I began to realize that none of the textbook descriptions of his syndrome accounted for my child’s unique, God-given personality. No other parent’s war stories accounted for the stories of grace that God wanted to write in my family’s life.
Now we laugh a lot. We laugh at the way our little guy giggles, especially when his big brother goes whizzing by or when you dip him in a cool swimming pool. He’s just another silly member of our bunch.
I wish I had known how my heart would be transformed.
I didn’t expect to learn about unconditional love and acceptance through my child. I didn’t expect to meet amazing and caring people along this path. And I didn’t expect God to use my pain over my child’s disability for a far greater purpose than I ever imagined at the outset.
My son’s diagnosis was something I never expected, never planned for, never wanted. On diagnosis day all of my dreams for the future when out like a light. Slowly as the days turned to weeks, turned to months, turned to a year, I began to see the beautiful ways God was providing through friendships, medicine, finances, and most importantly through Himself. He was transforming my heart.
I wish I had known then, how God would transform a heart of despair into a heart of hope.
I had the honor of sharing my “then and now” story over at ellenstumbo.com last summer. Ellen was one of the first bloggers I found after Nathan was born who had something real and really helpful to say about disability. Please check out her website if you get the chance
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!