Wednesday, March 9, 2016

One Year Ago

It was one year ago today that I held my 4 year old in a recovery room waiting for him to awake from anesthesia from his first MRI. It was eerily quiet, and I remember as I held him feeling so peaceful in that moment. He had suffered for over a month and a half from awful headaches, sickening nausea, frustrating tingling in his hands, and the worst numbness in his legs and feet leaving him unable to stand at moments. Yet, in that room, with the steady beeps from hospital machines and nurses footsteps, I felt a calm.

I didn't know, in that moment, that he would be diagnosed with a brain malformation or that he had a cyst on his pineal gland in his brain as well. I didn't realize that he would need to have further MRIs throughout the week and his life to check on the size or growth of both. I couldn't foresee that he would need a neurologist or a neurosurgeon and that we would need to speak and visit one or both of them every few weeks/months. I couldn't have guessed that he would need medication to control migraines and his symptoms or that, when not well controlled, they can cause other problems within the brain as they did. I had no idea, in that moment, that he would be stricken with seizures. I couldn't imagine then how helpless he would seem as the medicine tried to help actually caused terrible reactions to his body. I wasn't picturing in that room what might be ahead for him or us... I only felt peace.

The past year has been one of the toughest of my life, but as I look back to the day before Samuel was diagnosed, I am overwhelmed by the fact that God wanted me to feel His presence. He didn't want me to look ahead. He didn't want me to worry or try to figure it all out ahead of time as He already had. He wanted me to be still, hold our son, and rest in His perfect peace.

I have struggled with resting lately. I have been saddened by Samuel's situation and how he's hurting, but I was reminded by a friend that it's possible I am looking back today as a reminder to rest in that peace all over again. God knew what was coming, yet He provided the calmness I needed that day on March 9, 2015, to hold my resting son and to prepare my heart for what was to come. Peace. It's what I must choose one year later... for my son AND for me.

Thursday, December 10, 2015

We are Weak, but HE is Strong!


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!

Saturday, December 5, 2015

Last Night...

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.

Tuesday, December 1, 2015

Hope

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.

Monday, November 30, 2015

Waiting on You

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.