Tuesday, May 16, 2017
We had heard some of this type of news before... actually just two years ago. Then, it cut deep and made us feel paralyzed by the unknown. We researched and gathered information, tried different medications, and had many appointments. All of that came to mind today hearing what I hoped we wouldn't but knew we could.
Elias has been diagnosed with a Chiari brain malformation (a neurological disorder where part if the brain, the cerebellum and more specifically the cerebellar tonsils descends out of the skull into the spinal area causing pressure and other issues), just as Samuel was in 2015. Their malformations are quite similar in size, but the fact that Elias has central sleep apnea (which causes him to stop breathing during sleep) completely changes things.
He will soon go in for a spinal MRI for further information and to rule out a syrinyx or tethered cord. If he has those, he is definitely going to need brain decompression surgery to help relieve pressure. However, if he does not have those, he still has a strong possibility of surgery because of his current prognosis.
As the doctor explained all of this today, I remembered the worry that overtook me when Samuel was faced with a small Chiari (that, thankfully, hasn't required surgery), but I wasn't feeling that way with Elias... It was peaceful. It was matter of fact. It was out of our hands, as it always has been, and completely in God's. It felt great to realize these simple things and truths.
This might not have been what I wanted or expected to hear today, but it was exactly what we had asked and prayed for... an answer to our son's medical concerns. There was power in knowing now how to proceed, what specifically to pray for, and WHO was blessing us with peace. God knew what we were to learn today, and He granted us wisdom and knowledge from two years earlier to face this news with strength, grace, and peace that completely surpassed all of my understanding!
Saturday, October 22, 2016
But, this morning, he wanted me to tie his shoe. I was busy. He started yelling seconds later because he tied it himself! All by himself.
As parents, there are so many things we try to teach our children, expecting and wanting them to figure it out right then. I am beginning to believe that God is actually using moments like these to teach ME to be patient and let them/it be. Continue to train and lead them, but wait on them (and Him) to learn it in their own time. It is much more rewarding for both parents and children when they learn it for themselves and take what we have taught them and make it their own. Statistics say hurry, but God says to trust in His timing.
Who knew something as small as his first tied shoe would teach me so much?!
Wednesday, March 9, 2016
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
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
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.