.God is So Good.

I awoke yesterday with a bit of a stomach ache. Jamesy was scheduled for his EEG later that day. I just was not sure what to expect. It is impossible to predict how Jamesy will do in situations like this. I kept turning my worried heart to God every few minutes, but my morning was pretty frazzled. The hospital where Jamesy was scheduled for his appointment is an hour away, and we were told to bring him in sleepy and full. This meant that we could not let him fall asleep in the van during the ride to the hospital. Tricky. We dropped the bigs off at Jim's parents' home, ate lunch with Jim's mom, and headed to the hospital with a sleepy, full Jamesy.


On our way - attempting to keep Jamesy awake.






Jim treated my nerves with my favorite - gingerbread latte. My liquid courage - ha!



As soon as we walked into the room that the EEG would be administered in, the technician (nurse??) looked at me and asked how old Jamesy was. I told her, and she rolled her eyes and stated that if he was not perfectly still for the entire 20 minutes of the test than we would have to reschedule an appointment for a time when he could be put under anesthesia. My stomach dropped. Jamesy had to have anesthesia a few months back for his MRI, and it did. not. go. well. Without going into explicit details, that experience took Jamesy over a month to get over. I knew that God was going to have to intervene in order to get our almost two year old boy to lay still for twenty minutes, in a strange place, with strange wires taped all over his head. Remember, because of our attachment plan with Jamesy, we have made things very routined for him. He gets rocked to sleep every nap and night in the same place - same routine, same everything. He has only slept somewhere else twice (besides two hotel stays). Once this fourth of July for a nap at our friends' home, and once in November for a nap at Jim's parents. That is it.

We decided Jim would hold Jamesy during the test for a variety of reasons, one being that Jamesy is STRONG. I cannot even explain his strength, and no one believes it until they experience it. (Like the nurse that was with Jamesy when he came out of anesthesia with his MRI - she believes us now!) With my pinched nerve problems, I physically do not have the strength to restrain Jamesy. And in all honesty, when Jamesy is upset he always wants to be comforted by Jim. He has always been this way. So Jim held him in the big recliner rocker in the room, and attempted to give Jamesy a warm bottle of milk. Jamesy knew we wanted him to fall asleep, and he started pulling out every trick in his bag to not sleep. He was fighting with all he had.

Jim singing to J.

Internally I began to panic and pray, and I texted a friend who had been through this test with her daughter. I told her that Jamesy was fighting sleep, and asked her to pray. Jim switched Jamesy to his other arm, as the technician decided she was just going to attempt to attach the wires to Jamesy while awake. I received a text back from my friend saying that she was praying, and no sooner had I read the text and before the technician had placed one wire on Jamesy; he fell asleep!

It was supernatural.







And for the next 30 minutes Jamesy slept while the 20 or so wires were attached to his head (which was no easy feat with his curly hair!). He ended up waking when the wires were placed on his chest, but he laid still and calm and the twenty minute test went off without a hitch! I know that only peace that comes from God was filling Jamesy's little heart. Normally if Jamesy wakes up in a strange place or even here at home many times, all pandemonium breaks out. (We brought extra clothes just expecting there to be vomit, but he saved that for last night when we were home {wink}.) It went better than we could have ever hoped! Your prayers were so appreciated.

In two weeks we should know the results. The technician is legally not allowed to disclose to us whether or not she saw seizures while doing the test, but my husband is persuasive. Ha! He got her to say that "it certainly appeared like he was seizing". That was enough confirmation to me that we are on the right path. I cannot explain to you what it is like to be the mommy of a child with such a rare disorder. Honestly, most days I try not to think about it. I don't talk about it. I try to pretend it doesn't exist. Most days. But then things like yesterday come up. For example, when the nurse was going over Jamesy's medical background, we told her that Jamesy has Septo Optic Dysplasia. She looked at us as if we had two heads. What is that?! she exclaimed. It is in these moments where fear grips my heart, and I realize how very alone we are in this. Even when we go to the children's hospital in Philly, which is phenomenal, very, very little is known about this disorder. It is scary. I feel so much pressure to learn and research on my own, because if even medical professionals know nothing about this then who can we trust to care for our son??

It is in these moments that I have to remember the One who designed our Jamesy - perfectly. The One who knows Jamesy inside and out. The only One who knows Jamesy's past and Jamesy's future. That has to be enough. He has called us to Jamesy, and He will equip us. We are Jamesy's parents, and with Jesus, that alone is enough, even if we do not have all knowledge about his disorder.

Thank you my friends for praying for Jamesy yesterday. I ask you to continue to pray for him. As Jamesy gets older we are noticing more and more symptoms of his disorder. We are fighting to get him some much needed help in our home. We continually meet barriers when it comes to early intervention and vision specialists. He needs help. We need help. Please pray. Thank you for letting this be a place where I can pour out my heart. Today I am rejoicing. God is so good. So gracious.