A Letter Concerning My Son
The past seven months have been some of the most challenging months of my life. As I look back over my 33 years on this earth, the Lord has been faithful to bring me through all sorts of trials. I've survived nursing school while working full time and raising a family. I've counselled through issues of sexual violence. I've shepherded through the many trials of my church members. I've fathered five children and homeschooled each. But with the arrival of Remington (Remy) Luke Gruber, our sixth, mental, spiritual, physical, and emotional challenges have surfaced unlike anything I have ever experienced.
I have a few goals with this article. Firstly, I want Jesus Christ to be glorified by my words and actions. Next, I want Him to use my gift of writing to encourage and strengthen the Church and point those around me to Christ as the ultimate comfort. Third, I'd like myself to be reminded of His faithfulness to me these past few months. Lastly, I'd like to provide a real, raw perspective on navigating the challenges of a medically complex child so that those going through something similar might have something to relate to, as well as provide those who aren't facing this challenge to gain new perspectives and compassion on those who are.
Regarding Remy - History
In order to understand our challenges and struggles, you first must know and understand what's going on with Remy. I'll try to be as brief and clear as possible.
In early November, 2023, I received the text that no father wants to receive. They're concerned about something with his brain. They're scanning me again. Hannah was at a 32 week ultrasound anatomy scan while I stayed home with the rest of the crew. Up to this very moment, everything was going as swimmingly as it could, considering Hannah was carrying our sixth child. There were no red flags, no issues with the pregnancy. Until this very moment. I remember the pang of anxiety that flashed through my mind and body. Finally, I went into damage control mode, Are you freaking out? I asked. Trying hard not to. But it's pretty overwhelming, was the response. That would be the understatement of the year.
They doctor was concerned for ventriculomegaly and a possible arachnoid cyst in little Remy's brain. Being a nurse, I racked my brain trying to figure out why a 32wk old baby would be experiencing these things. They were concerned with several different infections, cytomegalovirus (CMV) being one of the primary. More tests would be needed, including a fetal brain MRI at Nemours, one of the nation's leading children's hospitals, in Delaware.
The next few weeks were a blur. Little did we know, we had 3 weeks to prepare ourselves for Remy's arrival. He was born via urgent C-section on November 27th, 2023. His week-long NICU stay was a challenge, to say the least. Our family was diligent to keep the kids home almost every night so we could attend to Remy and learn as much as we could about his condition and outcomes. Praise God he did not need much support in terms of his airway, and once his labs came back to confirm a "congenital CMV infection" (cCMV), he was started on a 6 month course of antiviral medication to reduce his viral load and to possibly preserve his hearing (one of the most common complications of cCMV).
It's impossible to be brief when considering the journey the last seven months has taken us on. In terms of specialists, he's seen infectious disease (ID), pulmonology (pulm), neurology (neuro), physical therapy (PT), speech therapy (ST), hematology (not continuing to follow), ENT, developmental intervention, ophthalmology (eyes), audiology (ears), gastroenterology (GI), and his regular pediatrician. He's got a lot of eyes (and stethoscopes) on him, sometimes multiple times a week.
One of the hardest parts for me, considering I work in healthcare, was that there's no definite prognosis for Remy. Each patient is unique and has different outcomes based on a multitude of factors. They see abnormal brain formation because of the cCMV, but God has made the brain to be a fascinating and amazing system, and it can reroute pathways and basically build around the damaged sections in an attempt to regain as much function as possible. Amazing, right! The prognosis for cCMV can range anywhere from mild hearing loss and learning disabilities to full blown wheelchair-bound living with significant neuro complications. Just recently, he was diagnosed by his neurologist with spastic quadriplegic cerebral palsy. Our doctors did a great job preparing us for this diagnosis at some point, but neither Hannah nor myself were prepared for a CP diagnosis so early. Spastic quad is the only CP that’s diagnosed under 1 year of age (at least according to the internet). The diagnosis is descriptive. Spastic meaning that he has tone issues resulting in abnormal contracting and movements, quadriplegic meaning in all four limbs, and cerebral palsy meaning originating from the brain and affecting muscle movement, coordination, and spasticity.
At this point, we simply have no idea how Remy will end up, but one of the great things is that there are TONS of stimulation points in our home with all of our children showering him with hugs, words, touches, and love to help build strong neural connections that will hopefully last a lifetime.
How Is Remy Doing?
We get this question several times a week. It's a hard thing to explain to those unfamiliar with all of the above, so hopefully that will provide a helpful explanation of what I'm about to try to communicate.
We've discovered some things about Remy that are actively being addressed. Because of his brain injuries, Neuro has discovered that he has high tone (think constant flexing and tightness) in his extremeties and low tone (think floppiness) in his core (head, neck, chest). The high tone causes him pain, and he was placed on gabapentin to help relax his tone during the day, and it has been a huge help to him. He's a different, happier baby when his meds are in full effect, and that's a huge blessing. The low tone in his core brings its own set of problems. He has a hard time keeping his airway open due to lack of strength and tone. He has poor head control, and can't keep his head up (yet). He has very noisy breathing and several forms of sleep apnea that cause his oxygen levels to drop when he sleeps deeply at night, setting off jarring alarms for us to wake him up to keep his oxygen levels up. For now, he can see and hear, but will be closely followed for both of those things, as it is possible for those senses to wane at any given time.
He gets weekly PT (sometimes twice a week) and speech therapy (coordination with feeding) biweekly. They'd like to add occupational therapy to the mix as well to continue working on strength and coordination.
He is a wonderful and amazing baby, but he certainly has his struggles that can't really be seen from the outside or at first glance.
Our Struggles As Parents
When we first discovered Remy's cCMV diagnosis, we knew we were going to be stretched and challenged in ways we have never been before. We had been preparing ourselves simply for caring for 6 kids instead of 5. We had no clue what we would have to prepare for with a cCMV baby. In addition of the "new baby exhaustion" and parenting the other five kids, Remy brings with him many new thoughts and questions to the mix.
To give you a glimpse into some of our struggles with Remy, I'd like to list out some questions we are constantly ask ourselves since his arrival. Some of these questions are "normal parent" questions that we all ask ourselves, but I list them too because they are even more emphasized in Remy's case for us.
Is that tick a seizure?
Will he be able to walk?
Will he ever be able to hold his head up?
Will his pulse ox drop tonight?
Is he sleeping TOO deeply?
Is he tired, or is he coming out of a seizure?
What kind of equipment will he need as he gets bigger?
Can our house accommodate a handicapped child?
Is he choking on his milk?
Will he be contracted (stuck) in this position?
Am I strong enough to carry him if he needs a wheelchair?
What milestones has he missed this month?
Should we take him to the hospital?
He's crying...is he in pain?
Did his medicine stop helping?
Will he always be able to hear?
What will his quality of life be like as he gets older?
Will we need to learn sign language?
What if he loses his eyesight?
What if I look at him, and he can’t see his Daddy?
Should we let the kids hold him when he's so floppy?
Will he make it through this sickness, or is this it?
Does he know how much we love him?
How are the other kids handling all this?
Do the other kids have any understanding about what’s going on?
Are we balancing time and attention between all the kids properly?
How old is _______ baby? Remy's not doing that...
These questions are constant. They do not go away. I'm not sure they ever will. We've never been so concerned about one of our children before. I don't list these questions to make anyone feel guilty about their situation if it is less chaotic than ours. Trust me, I know how hard even one child can be, and all the stress that comes with parenting. That's not my goal. I simply want to give a glimpse into our new lives in an effort to help inform those around us. It's not to garner sympathy or money. It's to help those in our direct community understand what's going on day in and day out.
The God of All Comfort
One of my other main goals was to see Christ and show Christ in the past six months. Even before Remy, I remarked often how hopeless we'd be as parents without Christ guiding our every decision. I cannot imagine parenting without Him, so right now, if you're a parent and you have not given your life over to Christ, I urge you to do that right now. Come to my church, we can explain it all and help you every step of the way.
The guiding passage for this section is 2 Corinthians 1:3-5:
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. For just as the sufferings of Christ abound to us, so also our comfort abounds through Christ.
No other religion can offer such a high purpose for suffering. For the Christian, suffering and trial are never without purpose and direction. Don’t get me wrong, we’re not masochists, we don’t desire the hard things that God directs us through, but He, being a good Father, tells us that we will experience these things. What’s more, He promises His presence and guidance along the way.
Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me; Your rod and Your staff, they comfort me.
Psalm 23 tells us that we can be in the darkest place, yet God is with us. His rod and staff correct and guide us through the most challenging trials, and lead us to green pastures.
Hebrews 4 tells us this about Jesus:
For we do not have a high priest who is unable to sympathize with our weaknesses, but one who has been tempted in every way as we are, yet without sin. Therefore, let us approach the throne of grace with boldness, so that we may receive mercy and find grace to help us in time of need.
Jesus was not born with a physical disability, but He did live his life among the disabled. Jesus, through the painful suffering of the cross, knew and intimately understood the frailty of our human bodies. He knows the limits of our flesh, muscles, tendons, and bones for His were pushed past those limits. And He did so for our comfort and salvation. Remember 2 Cor 1: For just as the sufferings of Christ abound to us, so also our comfort abounds through Christ. We suffer as Christ did, but because He did, we are also comforted by Him. We’re not getting a Shepherd on His first day. We’re getting a seasoned Shepherd, that knows the terrain, and will do everything to steer His sheep in the right direction. He protects them with His life. He loves them as a husband loves his wife. He lays a strong foundation so the house can be built strong and sure.
Friends, this is where we are trying to place our rest and hope. It is not easy. In fact, even the most menial tasks feel like mountains these days. Many tears have been shed. Many losses have been grieved. But there is comfort for us in the arms of Christ, and in His body, the Church. We’ve been so blessed by our family, our church community at Missio Dei, and by Christians all over the country. Your prayers are effective. And even though we continue to struggle, even though we continue to grieve and process life with Remy, we do not grieve without hope.
Again, if you haven’t placed your faith in Christ, and are living without this hope, please reach out to me and I’ll be glad to help you see the glorious truth, power, and sacrifice of Christ on your behalf. Then you, too, can walk through your trials with hope as we are.
Thank you all.