Our life has been pretty uneventful lately, staying busy with little family trips to the mountains, the zoo, parks, or just swimming. Trying to soak up the last summer I have before Joseph becomes a kindergartner! I try not to remind myself that I will go 6 hours a day not seeing my first baby (tears come regularly, if I think of it). He deserves to be in school though, he can't wait to learn more. Hyrum is starting to share some of his super cute words and I can see that he is very smart. He is pretty busy most every second of the day, he loves to spend hours outside playing in the sand. Joseph is more of a homebody and prefers to be inside playing with his toys. He is very imaginative these days, he loves to play vet and dinosaurs, or color pictures that tell a story (usually about scary stuff, like scorpions, and haunted houses. Haha).
Eliza continues to be our miracle baby who is an absolute mystery. She is the cutest thing in town, smiling NON stop. Her giggle is AMAZING. She loves her family. She has two little teeth on the bottom and is having fun biting people. She is just about crawling now (by far the fastest mover out of my children). It's times like these, with Eliza, I think the doctors are completely off their rockers and all science is a crock. I get excited with Eliza hitting all of her milestones (and way faster than her brothers) and think maybe the tests are wrong or that one of her Drs will call and tell us that everything is "just perfect", but usually it's the opposite. Liza has had three major tests done in the last two months that slapped me in the face (for lack of a better way of explaining my feelings).
First one was her EEG, it wasn't all negative, actually it was quiet positive. Abnormal EEG showed few tendencies for seizures but not enough to keep her on all of her meds (so we were able to take her off all meds except one). That was great news, but I had it in my head that the test would be completely normal with everything being perfect. Lol. I guess I can laugh about that now, not sure why I was hoping for that. The EEG also showed some slowing in another part of her brain that the Neurologist was not exactly expecting, so he ordered a second MRI.
While waiting for the MRI appointment we received her results from the DNA test. This was the epilepsy panel, scanning the DNA for mutations known for causing epilepsy. It came back with two different mutations one of which is a dominant gene that either she inherited from both Jason and myself or she mutated on her own. To find out for sure, Jason and I have donated our DNA to science (this makes me laugh because we have suddenly become a science experiment). This was not exactly the news I was hoping for, once again, I think I was hoping that everything would come back normal and perfect. Everything I read about mutations on this specific gene is pretty sad and my heart hurts for the people who are affected by the disabilities that are caused by certain variations of this gene mutation. The variation that Eliza has is not documented ANYWHERE so she may very well be the first documented infant with this specific mutation. So with that knowledge we know absolutely NOTHING. The mutation could mean that she will be physically or mentally handicapped by the time that has already passed, to simple delays, or she will have nothing more than her "normal" seizure tendencies. For now, I will consider the unknown an annoying blessing. We have an appointment in August with her geneticists to talk more about the results and what they could mean for Eliza in the long term.
On Thursday Eliza had her MRI. She was such a cute little doll in her little hospital gown. Because she is so young she had to be sedated and that is always hard for me to see. I hate seeing my babies groggy, especially after Eliza spending the first few months of her life like that. Jason got the report back a few hours later and it pretty much confirmed what we already know, that there are abnormalities in her brain that there is really no written science in babies this young. I am just patiently waiting for the call from her Neurologist to get his opinion, but he won't call until he has literally read every medical journal on everything related and possibly spoken with his colleagues (one reason why I love this doctor). He will likely call next week.
So I end my day feeling a tiny bit defeated, but mostly mad at myself for feeling defeated. When this whole challenge started I told myself it would be a new way of life for us and everything would be fine. Deep down (maybe not super deep) I just thought that "everything would be fine" meant "everything will be perfect". So you see why I am mad at myself! Not everything has to be PERFECT for it to be fine, or even great! Miracles happen every single day! I don't at all want to wish away these beautiful moments with her soul, they are some of the most sacred moments I have ever had in my entire life (and if I wish her to grow up so that I can know her actual outcome I may behold a teenage redhead daughter who feels like I am ruining her life and slamming doors in my face. haha). I look in my daughter's eyes daily and know her and she is perfect. I see Heaven in her eyes, I feel it when she touches my face, when she sleeps in my arms, when I watch my boys with her. I wonder if every parent feels with their children what I feel when I am with mine. I hope so.
A year or so before our children came to us, Jason and I took our bikes to the beach and rode about 16 miles. It was a very hard 16 miles for my chubby self, I was really not prepared for it at all. I remember having to stop after each hill, which was about every 5-10 minutes, haha. The ride was amazing though, it was full of such beauty and at the end, accomplishment. It was FULL of super tuff hills, hills I told myself that I couldn't possibly get over. Seriously, the only way I could keep going was to walk the bike up the hill, because I couldn't peddle fast enough to keep from falling over. Then there were the glorious moments of coasting down a hill with the sea breeze wisping through my hair and the small breathers where we just soaked up the view. I suppose the ride was a lot like life. Life is full of hills and sometimes mountains, and sometimes when the mountain is so large and you think you can't possibly go on there is our Savior, pushing us up. There are vista points to give you what you need to go on and to remind you of all that you are blessed with.
I like to think, my life has really been a pretty easy ride, I don't think there have been too many hills to climb and I don't think I have encountered a mountain yet. I don't know, maybe I'm climbing a mountain right now, slowly. There have been amazing vistas though. Sometimes I think it would be nice to just stop peddling and turn back around and continue down hill, but I guess that doesn't really get us to the amazing finish line. Beside that, with every hill you climb, the next hill seems a little more manageable. Right? So in my life I keep peddling, enjoying the vistas a long the way.
"Life is like riding a bicycle. To keep your balance, you must keep moving." - Albert Enstein
The other day I came across this scripture and I just love it! What a beautiful reminder that, so long as we keep our faith in the God who created us, He will support us in everything and in the last day He will lift us up!
"...whosoever shall put their trust in God shall be supported in their trials, and their troubles, and their afflictions, and shall be lifted up at the last day." -Alma 36:3
