This sweet boy was 19 days seizure free yesterday!
However, last night, he had one, making today a bit difficult. I am so thankful God hasn't called us to be strong and that He understands us in the moments of our weakness.
I will continue to praise God for His blessings!
When Samuel went to sleep last night, it was quick. He had complained about being dizzy so I wondered what the night would hold. I went to my room, trying to calm my thoughts, and was typing his symptom into my calendar when I realized he was 14 days seizure free. How my heart filled with praise!
It may not seem like much, but we haven't had to wake in the middle of the night to the sound of him having a seizure for 14 days. Sure, the possibility is there every evening (and day truthfully), but to our knowledge, Samuel has had two weeks free of this.
We don't know what lies ahead or what God has in store, but we're thanking Him in this moment for rescuing our son for this brief time... for clearing his head, for freeing his body, and for giving us peace. Last night was a blessing I don't take lightly.
As I sit beside Samuel in this hospital bed while the last few hours of his epilepsy monitoring come to an end, I cannot help but feel grateful. He has gone 10 days without an episode, and 3 of those 10 days were in the hospital without medication preventing it. I realize that these facts alone are reasons enough to praise God!
The past year has been a difficult yet hopeful one for Samuel. In January, he began having daily headaches. By March, he was diagnosed with a chiari brain malformation and a pineal cyst. Not long after that, his neurologist confirmed he was having migraines. He has been on different medications, and the side effects have been intense at times. In September, he began having these episodes that were later diagnosed as seizures in October.
However, despite all of this, he began Kindergarten (homeschooling). He learned how to ride a bike. He played his first season of soccer. He knows how to add and subtract. He enjoys writing letters for others and putting them in envelopes. He is a giver and has taken on the joy of blessing others with this. He has learned to save his money and keeps a wallet. He knows sight words and is reading. He loves church, singing, and praying.
I had hoped the doctors would get more information from this hospital stay and that they could tell us exactly what was going on. I wanted to wake in the middle of the night last night, as we have so many times over the last 3 months, to the sound of him needing me. I needed more so they could help us help him.
But God...
In the midst of my wishfulness, God tells me that I already have all that I need. He is the Creator of this unique, precious boy, and He knows exactly what is going on inside of him. He knows when he is waking in the middle of the night, and God is there before my husband and I can rush to his bedside. He tells me that wavy lines aren't the answers I need today. He reminds me to trust that He is in control. He already knew that the doctors wouldn't get what they needed because He has something else in store. What that is may not be for me to know right now, and I have to realize that God Himself is enough.
Whatever you may be facing today, do not let what you want get in the way of what God has planned. Last night, I was selfishly hoping for an episode. However, as I look in the smiling face of my boy this morning, I see that God wanted to bless us with ten days of being seizure free! God's ways are good, and He knows what is best. Allowing Him to have His way makes room for hope. That is what I feel this morning more than anything else.
Last night (Saturday), it was close to midnight before Samuel fell asleep, and I prayed over him that God would watch over and protect him as he slept. It's a strange thing... wanting your child to be safe from harm but waiting for him to have an episode.
When the first neurologist arrived around six something this morning (Sunday), I was reminded that God's plan was no seizure on night one of epilepsy monitoring (EMU). Samuel had slept well, and when the team of neurologists came an hour later, they asked questions concerning his episodes and how they normally present themselves. The attending epileptologist was grateful for my detailed descriptions and said that Samuel's sound very indicative of seizures. She decided he would not take his medication for a second day in a row to induce seizure activity. They said we would just keep waiting.
Samuel had a long day, though. He became more frustrated and bothered by the gauze and wires, saying they itched. He played app after app, but he was just so exhausted, he wasn't too thrilled doing anything. He got a big surprise when his Aunt Jessica and Mimi came and brought a bag of goodies! He was so tired after they left that he fell asleep. While he was sleeping, another visitor came. Daddy came and brought more cookies.
However, Samuel has been quite the tough one to break because he ignores most anyone who walks in the room - all of the nurses and doctors! He has not enjoyed getting his vitals taken or having to take his antibiotic for a cough he has / had prior to arriving. He has not talked to his nurses at all!
Tonight ( Sunday still ), we rented a movie from the Vanderbilt DVD kiosk. The nurses told us it was like the uncool cousin version of Redbox or Netflix. They gave us a card, almost like a library or gift card, that is ours while we are here, and we can rent one movie at a time with it for free. We watched 2 tonight. Samuel thought it was great!
It seems so simple to wait. Wait until he has an episode. Wait until we get what we need. Wait until he has a seizure then press the black button. I think that I am starting to realize that it isn't about the wait as much as it is about my surrender. I have sat in this room looking at Samuel thinking the reason we are here just cannot be possible, yet I have prayed to the Lord to protect him at least a dozen times since yesterday. Lord, if it be Your will. No matter what happens here or at home with Samuel, God is and will be exactly what we need and have been waiting for. So, tonight, as our sweet boy sleeps, if God has chosen this path for us, then I will wait.
Pictures include: waking up, smiling with Mimi, grins with Aunt Jessica, movie with Mom, napping, cookies with Daddy, and bedtime.
As we drove to Vanderbilt this afternoon, Samuel was quiet. I had prepared him. Brian had prayed over him. Daniel was genuinely concerned about him. Elias had hugged him. However, the silence in the van was deafening, and I was worried that maybe he was worried.
He wasn't, he assured me.
We were short on time, but we were listening to the radio when we were just over 10 minutes away when a familiar song came on. Tears filled my eyes, and I snapped a picture of my watch. I didn't want to forget when God reminded me to let go of worry and to let Him hold us. It was perfectly planned, if you ask me.
Here are the lyrics that comforted me:
"So, when you're on your knees and answers seem so far away. You're not alone, stop holding on and just be held. Your world's not falling apart; it's falling into place. I'm on the throne, stop holding on and just be held. Just be held, just be held."
Just Be Held by Casting Crowns
Tonight, we are settled in our room. He is flipping through channels with his sweet head wrapped in gauze. Earlier today, he had to sit incredibly still as a tech strategically placed the 21 EEG wires on his head, then glued and dried them. It was physically uncomfortable for me to watch because he was so nervous through each placement and drying. His eyes would fill with tears and he gripped my hands. I was so amazed at how this timid child bravely got through this. The tech wrapped the wires in gauze so that they wouldn't be exposed over the next few days.
He then had to endure a series of tests that induce seizures. He did fine, but he was soon complaining of a headache. It is still bothering him 2 hours later.
The rest of the day, he has eaten supper, played electronics, and walked around the room. He even had his favorite people visit! Daddy, Daniel, and Elias brought cookies that had an I ♡ U and a :) on them and actually had him balloons. It is going better than I could have imagined thus far, but of course, God's plan are far better than mine.
The doctor has decided not to give him his regular medication tonight in the anticipation of bringing about a seizure with the addition of today's testings. We are thankful to have nurses and doctors watching him during this process!
Pictures include: the moment God blessed me on the way to the hospital, two thumbs up to arriving in our room, Momma and Samuel, attaching the wires, gauze in place, Daddy and Samuel with the special cookies, brothers in the hospital bed, and sleepy buddy.
The past season has been one of quiet anticipation. We have waited for doctors' calls and new medications to take effect. We have watched as the leaves changed and Samuel as well. Seizures came and vacations went. We spent special moments with loved ones and enjoyed times together we will never forget. We laughed a bunch, cried some, and were frustrated often.
I have to be honest, Samuel's migraines and seizures aren't "big" in comparison to what others are enduring in this life, but they have changed our way of living. We have to anticipate when the next one will be, when exactly in the night he will wake, how long it will last, and how he will feel the following day(s). His medication(s), though they have a positive effect on the length of his seizures, have had made some adverse changes in his personality (anger, aggression, etc). We are adjusting and being reminded that God is faithful in our times of fear.
To further his care, Samuel is being admitted to Vanderbilt Children's Hospital for epilepsy monitoring on Saturday, November 28th. We are being admitted for four days or more with the anticipation of catching a seizure under testing. This will provide specialists the information they need to know exactly which type of epilepsy he has and the best plan for him.
Please pray for comfort and peace over Samuel as it will be physically uncomfortable for him. We, of course, are somewhat anxious, but Jesus is holding us. He alone is our strength and HELP.
"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand." Isaiah 41:10
*Pictures include: swimming with Daddy in Pigeon Forge, holding Mom's hand after a seizure, and loosing his 1st tooth.
See, in this picture you don't see that I had been rushing them from the table and telling them to "Hurry up!" repeatedly so we wouldn't be late to meet our friends. However, they understand the importance of showing our friends how much they love them, and instead of hurrying, they paid careful attention to their drawings for them, even included pennies and rocks from their collections so that their friends could start their own. In my frustration, I almost missed it...
UNTIL, they said, "Just a minute, Momma."
In that moment, I realized what they were doing was important and had meaning, and I watched in complete awe as their friends (who didn't seem to mind that we were a few minutes late) were given their special gifts. They were so excited to get them, and the boys were thrilled to give their things away! My heart was so full.
Oh, me (and mommas just like me)... it's only a minute, and there will never be another like it. Don't miss it.
Brian turned 35 today, and we celebrated big. The boys made him cards, a video, a painting, and we got him a photo of our family that his sister Kim took on canvas. My dad came this afternoon and surprised him with a new blower! We went to dinner with our family, who gave him such sweet gifts and had a great night. We are incredibly grateful for his big love for us!
