Fortunately for me, Becki and I have been in a small group together over the past year through our church. Becki is a software product manager for Daxko. But her greatest source of pride is being a wife to Garrett and Mama to Gabe. To understand her best though, she uses the letters ESTJ; where as I am an ENFJ (Myers-Briggs, anyone?). Furthermore, Becki humbly described herself as “a really broken person that constantly makes mistakes, and stubborn too. So it takes a long time to learn from those mistakes.” Anyone identify with Becki? I imagine we all can.
Please, tell me about your son.
I love telling people about my sweet Gabe! Gabriel Lewis Irby was born in November 2012 on his due date. He is the sweetest five year old you will ever meet! He loves music, snuggles, our dog, and friendship. If he is being rocked by a parent or grandparent while Puppy Dog Pals plays in the background, he is as content as any human I have met.
When Gabe was born they called a code. The moment we thought would be the relief after a long labor was just the beginning of our story of hardship. In seconds, more than ten nurses rushed into the delivery room and began working to get Gabe breathing. I’ll never heal from that trauma on this side of Heaven. We spent almost a month in the NICU, riding a rollercoaster of bad news, followed by great news, followed by devastating news. An unknown, undiagnosed event somehow led Gabe to be deprived of oxygen for some unknown period of time. At 14 days old, we learned that the brain damage was global and that this tiny little baby we had longed for would face a life of physical and intellectual delays. Gabe’s official diagnoses are Spastic Quadriplegic Cerebral Palsy, epilepsy, microcephaly, and cortical visual impairment. Gabe has endured many hospital stays, several surgeries, a trillion hours in doctors’ appointments, and countless therapy appointments. And Gabe has done it with deep joy! He smiles and laughs and giggles. Gabe has changed our lives and he changes the lives of others. He is a true slice of Heaven right in our arms.
What are you most proud of Gabe for?
I am most proud of Gabe’s trust. We take this precious boy to have medical procedure after medical procedure, IV after IV, test after test. And he still finds comfort in our arms and smiles at us and communicates that he trusts us totally. It is the most overwhelming and humbling experience.
What has been the hardest thing about being a mother?
I could write a novel about this. The hardest thing about being a mother is being kind to myself and offering forgiveness to myself. After Gabe was born, I asked a million times what I did to cause it. The doctors couldn’t even pinpoint when his stroke occurred, much less what caused it, but there I sat blaming myself for everything. Gabriel was not strong enough to breastfeed when he was in the NICU. Also, I did not have skin to skin time with him until he was four days old. Nursing was doomed from day one for us, and at six weeks my OB had a serious heart to heart with me about letting go of nursing him. To try to write the amount of shame I felt (and if I’m honest, still feel) is impossible. My internal narrative kept saying, “Of course you cannot nurse him! You could not even deliver him safely into this world. You are unworthy/unfit to be his mother.” That is difficult to write, friends. But it is honest. I worked with a fantastic counselor who helped bring me back to life after Gabe was born. I learned to be kind to myself, and worked on negative dialogue in my head. However, the negative internal dialogue is persistent. When Gabe gets sick I immediately think what I could have done differently. When he has a seizure that is worse than normal, I criticize each and every component of our schedule the previous twenty-four hours. When I take a nap that is most necessary, I wake up and feel guilty about the time I missed out on. The list goes on and on. It is impossible to avoid mom-guilt on this journey. It is improbable to avoid self-shame.
I continue to do my counseling exercises, and I also do my very best to tell a trusted companion about my internal thoughts so truth can be spoken over me. This will always be a part of my journey. I do not like it, but I am learning to accept it.
What is the best thing about being a mother?
The best thing about being a Mama is the deep and inexplicable bond that I have with my Gabe. There is nothing that will ever take it from me, or lessen it, or threaten it. He is my son, and I am his Mom. And I have no doubt that Gabe feels it as well.
Having a non-verbal child introduces certain challenges though. It was very difficult in the beginning, as I struggled to find deep peace about not hearing Gabe call me Momma, tell me what he needs or what hurts, or say “I love you.” Just as I found a place of peace, I started to realize that Gabe may not speak words to me, but he is constantly communicating. Through our deep bond, I almost always know what is hurting him, and can use his physical cues to understand what he needs. I have no doubt that he loves me. And he absolutely calls me Momma by craning his neck to the extreme to find me when he hears my voice. Friends and family frequently ask, “How did you know he needed x?” or “What made you realize y was bothering him?” The answer is this unspoken, almost subconscious language that we speak with our son.
None of this would be possible without the bond God has granted us. It is something we savor and appreciate with all of our hearts.
How did the Lord feel near to you in your grief and mourning?
One truth that not many people know about our journey is that Gabe was absolutely miserable for the first year of his life. There were numerous contributing factors, primarily his struggle to eat and finding the right balance in his medications. I refer to that first year as the “dark days” and I honestly struggle to remember them. Gabe cried most of the day, and rarely slept more than four hours in a twenty-four hour period. I worked full-time and my husband was working part-time and pursuing his Masters. Many of the expected joys new parents experience that keep them going in the difficult times were not part of our experience. For example, Gabe did not smile or show enjoyment in anything until he was eleven months old. Overwhelmed is an understatement for that first year. We were financially underwater, isolated from everyone except family, struggling to understand medical files, and totally unsure about the future. In the first half of the year we were consumed with how Gabe was tracking on his physical milestones. By month six, we realized milestones were not going to be a part of our journey, and began begging God for inchstones.
“Would Gabe ever be happy? Would he connect with me one day?”
I was a believer before Gabe was born. I grew up in church and knew scripture. I knew about God’s promises. I never once doubted God’s existence. But mercy, if I did not question His goodness. I remember praying, “God, how do we do this? If You have a bigger plan, how will we even survive to see it? I can’t do this, Lord! Rescue us! Rescue this sweet baby! I’m not a good enough human or mother to handle this!”
In all of those prayers I never heard a booming voice of reassurance. I remember reading my favorite Psalm that is now our life Psalm, the thirty-fourth Psalm, over and over again. I thought maybe if I read it enough I will believe it.
“I sought the Lord and He answered me; He delivered me from all my fears.”
Gabe’s middle name is “Lewis” because of what C.S. Lewis has meant to our faith. I read Chronicles of Narnia, one of the ways I have connected with the Lord over the years,
“He is not safe, but He is good.”
“How can I believe it, Lord. Where is the goodness?”
I had hope, but it was a frail hope that God would allow us to care for this baby who was so unhappy. Eventually, I accepted that life on this Earth would be bitter.
In October 2013, we returned from a trip out of town to visit family. Gabe despised the carseat, so we were all glad to be home. I took him into his room to change his diaper, and he passed gas (something he had done a million times since birth, just like all other babies). And all of the sudden I saw a tiny, crooked smile on his face. “It’s possible! He can smile!”
For anyone that knows our Gabe now, you know that he has a million dollar smile that he displays 99% of his waking hours. He just needed to experience happiness and embrace his smile.
“How did I doubt you, Lord? How did I doubt Your goodness? Would I have realized the sweetness of Your love if I had not reached the depth of the world’s bitterness?”
Have you heard of the concept of an Ebenezer? In Hebrew, it means stone of help. In 1 Samuel 7, Samuel sets up a commemorative stone and names it Ebenezer after the Lord rescues Israel from the Philistines, saying “Thus far the Lord has helped us.” In the same way, people of faith look back to the times when the Lord rescued them from doom and make conscious effort to remember that Ebenezer, that proof that the Lord is good and keeps His promises. That tiny, crooked smile when Gabe was eleven months old is my Ebenezer. I will never, ever forget the way that God pursued us in the dark days and brought us the sunshine.
I won’t say that I will ever totally mourn the physical milestone. I would love to hear Gabe speak words, have him wrap his arms around my neck, feel a kiss on my cheek, or make eye contact with him. But let me tell you how the world’s measure of achievement melted into oblivion when my son started to reveal his happiness in spite of his disability. No longer do I obsess over charts, but I thoroughly obsess over the way God has revealed Himself to so many people through Gabe. What a joy he is! God knew that Gabe would come into his own. He knew the exact day and time and cause. And He knew He could carry us to that place to see us through. What a kind and gracious God to allow me to pray that untrusting prayer over and over again. This is why I beg anyone struggling with their faith, or with their trust in the Lord, to press into Him. Keep reading that scripture that you loved before, even when the words sound and feel empty. Keep praying honest, angry, and anxious prayers to the Lord. He will not abandon you. He will not leave a promise unfulfilled. He is so very good.
“Oh taste and see that the Lord is good; Blessed is the one who takes refuge in Him.” Psalm 34
When you realized that your life was forever changed, was there any particular thing (song, book, verse, piece of advice, etc.) that helped you to continue to wake up every morning and get out of bed?
As I mentioned, I read Psalm 34 over and over again. I didn’t know what else to pray most days, so I prayed that scripture. Additionally, I read the amazing devotional Streams in the Desert. It dives headfirst into grief and mourning with scripture and stories to affirm our faith in troubles.
I also used imagery from a passage by C.S. Lewis in The Great Divorce where Lewis said:
“That is what mortals misunderstand. They say of some temporal suffering, ‘No future bliss can make up for it,’ not knowing that Heaven, once attained, will work backwards and turn even that agony into a glory.”
That passage opened my eyes to a Truth: that our Lord is not going to erase our memory of the bad, but actually work our pain backwards and restore what was lost. I don’t know what that looks like, of course, but it is such a healing thought. I can see the imagery of things being undone to be redone the way God intended, before sin shattered the world.
What are you most looking forward to about Heaven?
I am so anxious for Heaven – to have an understanding that we have never had before. I think that we will have no more questions about Gabe’s health, and will never again have to ask “why?” And of course, I look forward to Gabe’s freedom (and mine) from earthly struggles. No more weeping or sadness – how amazing!