Light in the Darkness

The months following Bryce’s diagnosis were rough. Trying to accept the challenges our son would face was an emotional battle for us. Most days I felt we were losing, everything seemed so dark and lonely. All we could focus on was the fact that Bryce would die. Honestly, some days it was hard to function. We were in a rut and had to get out, so we pushed on, taking things one day at a time.

Although those days seemed unbearable, we learned a lot from them. We began seeing beauty in the simplest of things. For me, it is found in my sweet boy’s smile, the twinkle in his eyes when we are playing, his little fingers holding mine. We found joy in the little things, like snuggling, getting peed on while changing his bum, nap time, and especially his laugh (a rare treat!). We learned how important patience is. As mentioned before, Bryce is a horrible eater, and it takes a LONG TIME to feed him. Finally, we discovered happiness could be found in every moment, even the dark ones.

From the beginning we knew Bryce would be special, that our time together would be precious. With the revelation of his genetic differences, our belief in God and his eternal plan gave us the added boost we so desperately needed.  When we hit our lowest of lows we recalled that God knows our pain and he can comfort us in our time of need. After all, he knows what it’s like to have a son who he would one day see lose his life. With our Father in Heaven helping us, we have become a strong and loving family.

Despite the emotional battle we faced, we received so many blessings! The first of these came a few weeks after the diagnosis. Bryce was accepted into the Early Intervention program through The Learning Center for Families. This is an AMAZING program, and has been so helpful! We have a Care Coordinator, Physical, Occupational, Vision, and Speech Therapists who come to our home on a regular basis. They teach us different activities (exercises, stretches, games, etc.) to do with Bryce so we can help him have the best quality of life. For example, we have been taught how to help him learn to reach for objects, hold onto things, rollover, keep his bowels moving, and many other things you would generally not think of as being a big deal. Everything they have helped us with is slowly paying off! I could EXPLODE with excitement at how much Bryce has progressed!

Our next blessing came a month after the diagnosis. Justin graduated with his bachelors! Now, I just have to brag about my hubby for a bit. When Bryce was first hospitalized for seizures, Justin had just begun finals week. He had five finals he had to study for on top of all the stress and anxiety we had from discovering our baby has seizures. Justin believes in ALWAYS doing your absolute best, and that is exactly what he did! He graduated Summa Cum Laude! He is such a strong, hardworking man, something I admire and love about him.

Two months after the diagnosis, we received yet another blessing. I was able to quit my job! Jus and I knew this was the right thing for our family, but it made us a little nervous. With me no longer working, we lost almost half of our income. We weren’t sure if we could make it, but we knew Bryce needed me at home. What a blessing it has been! Not only am I able to care for my son (he is a lot of work, but I love it!), but Justin and I were finally able to actually see each other! Before, I would work all morning and early afternoon while Jus took care of Bryce. Then we would switch and Jus worked all night long while I cared for Bryce, so we NEVER saw each other and it was taking its toll. Since I have been home our relationship has only grown stronger.

Another huge blessing was that Bryce wasn’t having any convulsions! Since we did the steroid treatment in an attempt to stop his Infantile Spasms, the only types of seizures he had were absence and the spasms (the steroid didn’t work). In fact, his convulsions stayed away until he was 10 months old! Up until that point, he was still only on Phenobarbital and Keppra, but once his convulsions returned it was time to start a new medication. Our neurologist gave us a few to pick from. We researched them and asked other parents if they had tried any of them. It was a difficult decision to make. The side effects associated with all of the meds were pretty scary (such as permanent blindness, kidney stones, etc.). Some of the best advice we received was that sometimes you have to make the least worst choice. That is exactly what we did, and Topiramate was started. We first tried to replace Phenobarbital with Topiramate, but after a few decreases of Phenobarb, Bryce’s seizures became much worse, so we stopped. Currently, he is on all three meds.

Although we couldn’t get Bryce off the Phenobarb, the decrease did help him become more alert. This change was almost immediate. The morning before his first birthday Bryce did something we NEVER thought we would hear. He had just woke up and I was feeding him. He was having a hard time paying attention to his food, he kept looking around. It was like he was noticing something for the first time. Then, out of nowhere Bryce started LAUGHING! I was so excited I started crying! I yelled for Jus to come and enjoy this beautiful moment with us. He jumped out of bed and ran as fast as he could to us. Bryce laughed for almost five minutes straight! This is by far one of our most cherished memories! It has been several months since Bryce’s first laugh, and we have only heard him laugh two other times, both in his sleep.

Finally, Bryce’s first birthday was here! With all the emotional uncertainty of the past year, we were so excited to celebrate with him. Bryce had been through a lot, but he also proved what a fighter he is and surprised us and his doctor with many accomplishments. When he was diagnosed with EIEE 4, one thing we were told was that he would have a feeding tube before he was six months old. Here he was at one year, and still eating orally! He was beginning to track objects, he was keeping his hands open about 50% of the time, and he had started making lots of different noises.

We threw Bryce two parties, one with my family while we were visiting a month before his birthday, and one with Justin’s family while visiting on his birthday. Both were so much fun! Having the love and support of family is one of the greatest blessing in our lives. We love sharing the triumphs of our wonderful boy with them.