I have to be honest with you all I have been avoiding this post. Not because of Judah and what has happened to him since I last wrote, but because of what has happened to me since then. I have not wanted to write because I have not wanted to face the feelings and emotions that have swirled just beneath the surface. I have not wanted to face the monster I feel that I am because of these feelings. But, as life always does, it forces you to deal with the very things you wish you could sweep away and forget about. So today is my day of reckoning and coming face to face with my own emotions and feelings about my son, his journey, and my own sinful nature. As in all my writing I vow to be open, real, and honest. This may come at the very expense of people’s ideas about me or thoughts of me being shattered. I still stand with my convictions to be open and honest. Because if this helps one person but costs me all others it was worth it. So, with mercy and grace, I ask that you proceed to read as I continue Judah’s Journey.
Since we last talked I have developed a page on my website dedicated to Judah’s Journey. It includes all my writing and our vlogs of his birth. If you have not read or watched these please do as this blog will be based on where those left off. From the moment we got him home there has not been a minute of relaxation. Not that we expected any time to relax having two small children. But, due to Judah’s diagnosis of fluid on the brain and the lack of knowledge we have had about the situation keeps my wife and I on alert 24/7. After his birth we were told we would just watch the fluid and if it began to increase then he would need a shunt. So we would go in weekly and sometimes multiple times a week for pediatric appointments and then to Sacramento to his neurosurgeon. Our first visit with the neurosurgeon produced great results. The MRI showed that the piece of Judah’s brain that was missing was actually there. In that moment we felt the first relief we had in a long time. It was then that the Dr. informed us that both chambers of fluid in his brain were enlarged meaning he would need possibly 2 shunts or we would have to poke a hole through the thin veil that separates the 2 chambers. Needless to say, wasn’t the greatest follow-up news. In the next week Judah began to develop an eye infection which is common, but something new for us. About this time I began to notice an eye twitch that we passed off as baby twitches since infants tend to be twitchy. During this entire time Judah had an immense problem with throwing up, out of both his nose and mouth. This again kept us on high alert as one of the things we had read about shunts and fluid on the brain was vomiting. Although the Dr.s say it’s all normal it did nothing to calm our nerves. Every noise Judah makes has been reason for us to jump up and check. Sometimes with good reason and others with no reason at all. Imagine the middle of the night hearing the normal baby sounds but because of all that has happened you jump up wondering if your child is choking on their own vomit. Needless to say you never really get the rest you need when you are on edge. I must say my wife has handled the brunt of that during the nights like the Superwoman she is, but it definitely has us both up constantly during the night. To make things a little more interesting our daughter has been teething and during this period of time had four molars coming in. The symphony of crying at times in our household has been devastating to say the least.
As Judah continued his appointments we once again found ourselves in Sacramento meeting with the neurosurgeon. It was at this particular point that we finally saw the 3 foot tube that would be inserted into our sons body. Needless to say it was shocking to think he would live with this long tube in his head and down his neck over his clavicle and into his abdomen. It was at this point that we had heard he’s gonna need a shunt one too many times and asked if we could just make the appointment. It was right here that as a father I began to feel like a complete selfish failure. My desire for wanting the shunt appointment made was because we wanted it in before the end of the year for insurance payment reasons. I couldn’t help but think I had just placed finances over the faith that God was going to heal my son. Turns out it was already going to happen even sooner than we had planned. Remember that little twitch, well it continued and became more frequent to the point we called the Dr.. They ordered the medication Kepra which is supposed to help with seizures. It was that moment when it became darkest for us. Mentally, emotionally, spiritually we felt numb in every way possible. We became machines getting things done out of necessity.
We had never hoped more that a medication would not work. The idea was that if it did not work then he was not having seizures. It worked. From that moment on his procedure became a priority and they had him scheduled that same week. That week didn’t even feel like a week. It really felt like I was in slow motion and the world around me was moving at warp speed. I was buying seizure medication Tuesday and taking my son in for neurosurgery on Friday. Truly it was a numb week.
After the surgery we thought everything would get better, no more spitting up, no more seizures but it wasn’t quite the end. When we got him home our new project became wound care for a gnarly wound on his skull. This past week has been crazy watching the area where the shunt has been swell like there is two hot dogs under the skin. After a week of watching that thing swell whenever he would get frustrated we called the Dr. and found out that we can put a headband on to put pressure on it as most likely some fluid from the hole in his skull is coming out through the hole.
This is where we are at currently, his head looks worse than when the shunt went in. He had a seizure this past Sunday morning while still on Kepra. We cant take him off Kepra because it can make him worse. The Kepra makes him sleepy and agitated. His spitting up has gotten somewhat better but still has us on high alert 24/7.
For me personally this entire journey has been overwhelming. I honestly don’t feel as if I have connected with my son. I have a hard time holding him. When I feed him I put him right down afterward. I just don’t feel a connection the way I did with Lily. I haven’t had one moment to enjoy my son. I just keep worrying about him, praying for him. It seems like one thing after another after another. And to illustrate that principle even more, we found out that Im receiving a pay cut starting the first of the year. My job as the husband and father is to be the protector and provider. My ability to provide has been challenged and I could not protect my son from his condition. I have felt more like a failure than I really want to admit. There have been times where thoughts of Judah dying have crossed my mind. The moment they do they are met with a stern rebuke but also a misleading glimpse of hope, that at least there would be an end. I feel like such a monster for even having that be a thought. But, I must say that in the midst the idea of all of this being over when you are tired, worn out, and have nothing left is one that can be alluring. But, its in those moments that I refuse to be who Job’s friends wanted him to be. The guys who cursed God and died. I’m nowhere near that, but I am broken. I feel on the verge of tears almost 24-7 for no reason. I’m tired, stressed, worn out, and concerned about my family and my son’s future. I must confess that in these past weeks I have failed. One night in my frustration I told my wife I didn’t know if I could do this. I relinquished my role of head of our house and put more pressure on my wife to take care of 3 people. Rather than have two people taking care of two. As my wife always does she responded with grace and humility and loved me, and I apologized and vowed never to fail her again.
You see my family is in a season of transition in more ways than I can even begin to share. From adding Judah, to traversing this journey with Judah, and financially we are in a season of transition that I can’t see the end of. That is the hardest part of having faith. You see having faith when there is hope is easy. But, having faith when there is no hope of an end in sight is simply tough. But then again I would have to say that hope is the byproduct of faith. Therefore when we live by faith we have hope in all situations. God has truly been faithful from Judah being born with a complete brain to my wife and I’s marriage getting stronger. We truly have seen God work. But sometimes you just have to stop and ask God why? I believe that this is a grey area. I don’t suggest questioning God; I suggest trusting God. But more than we have asked God why its been more of the response “really” when something else happens. Its been my experience that these small responses are just our flesh. And in an un-blamable situation we use these responses to start to blame God or get caught in the victim mentality. When I stop and ask God “why?” and stay there too long I become a victim because the very asking of “why?” is a breakdown of my faith and results in — no matter what response God gives or does not give — my flesh and logic will be discredited and I will become bitter and catch the victim mentality. When I ask God “why?” I always very quickly answer the question myself, “because God will be glorified in a major way by this.” Thats the answer I give myself. Because if my life is drawn out by God to be full of tough roads and hard seasons then the only answer that will suffice is that God is going to get glory out of what I’m going through.
You see my feelings can’t dictate my faith, my faith has to dictate my feelings. So many others have it flipped around that we end up with flakey Christians who dip or rebel the moment life gets tough or God says no to what they want. Faith is about trusting in things unseen. Like trusting that there is a day that Judah and I will be playing catch and I’ll be teaching him how to be a man and cheering him on at his games. I have that faith because Gods word gives me that faith. Therefore I have hope, and my hope gives me joy, and my joy gives me strength, and my strength gives me the ability to put one foot in front of the other.