I was wrong.
Nothing is horrible or tragic, but it also doesn't feel easier. Not by a long shot.
We haven't yet settled into a "rythym" where I find comfort.
But maybe that is to come. We've only been back in our house for a couple of months and are still trying to get settled. Maybe that's it.
Maybe it's my need to feel in control when it's not all mine to control anyway. Maybe that's it.
Or maybe life is just harder some days than others and I'm still trying to figure out how to find the blessings and gratitude that I'm supposed to find in the midst of everything.
That's probably more like it. It's my expectations that are out of whack, not life.
And I'm human. Can't forget that little fact.
It is with all of that newfound wisdom that I journal about the last few months.
Life is hard....and good....and fun.....and miserable....and daily.
You want the details? Probably not. That would fill chapters in a book. Here's the overview. Enough so I'll at least remember how it alll played out.
Every month I say "If we can just get through this month, next month is sure to be calmer. Not quite so busy." I actually envision God chuckling at me as those words roll off my tongue.
The second quarter starts in April, right? Feels like a year has passed.
For Logan, this hasn't been the best few months. We would like to say life is awful for him right now, but I just won't go there.
~~~~~~~~~~~~~~
HOLD THE PHONE.
So, I prayed this morning....and then promptly forgot what I prayed for. I needed to get on to the rest of my day, you know? Luckily God didn't forget.
One of the things I prayed for was to feel those little nudges He sends during the day to remind me to turn to Him. He sends them...all...the...time. But we don't always pay attention. So He sent one through Facebook, proving that there is some good to Facebook. Kirk Cameron posted something about how having an attitude that "life stinks" or "life is a bummer" really means you're judging God.
Ouch.
Now, in the world of perfectionism that we all live in I should have deleted all of the stuff I typed before I got that little nudge. I should have edited and filtered and massaged it so that you could feel the birds chirping and the sunbeams gloriously washing over my soul.
But in the world of reality I think we all SHOULD be living in, it's staying. Because that is where I started this morning. Right after praying for things that should have changed my view of life. Praying for things that would have eliminated all of those words and created only those that spoke of love and gratitude.
A shining example of needing more God and faith in my life. More time with my heart and mind focused where I know it should be.
I get so caught up in the world and finding comfort in those who will commiserate with me. Those who will agree with me about how hard my life is and how unfair everything seems at times. And I can find that anywhere. There is any type of group I want to seek out to fill me with reassurance that I am right. I am justified in however I want to feel. To remind me I have every right to be bitter.
Being the southern country girl I am, the song "Looking for Love in All the Wrong Places" keeps rolling through my mind. Another nudge, no doubt.
So...let's start again. Hopefully with a different approach to our last few months.
The fact remains that Logan is in a tough place, regardless of editing or filters or brutal reality. His seizures are no better, if not a little worse. And he sleeps a lot. I find myself bouncing between frustration and sadness that he misses out on life. He sleeps through so much and when he is awake he just seems to be in a fog. We miss the smiles and giggles and excitement for life that we know is in there. It's the part of living with Epilepsy that gets overlooked. It's not just when the seizures happen, but the emptiness they leave behind.
But.....and this is the gratitude part....there is more to Logan's story.
He's still in there. He reached up and patted Nana's face the other night, on his own. He may not be able to create a smile as we know it, but his eyes tell a different story. A story of a love and devotion to his family like nothing I've ever known.
I said to him the other night to call Daddy....call him loud and he would hear. Not a sound came out of his sweet little mouth, but his body was busy all over trying to call his Daddy. So I was his voice and Daddy came.
I mentioned the seizures were not any better even though we have adjusted meds. We had a nice honeymoon period with one adjustment, but it was somewhat short lived.
The next step is VNS surgery. You can read more about it online, but the gist is that they will attach a wire to the vagus nerve in Logan's neck and implant a pacemaker-like device in his chest. This device will be adjusted to create a pattern of signals that are sent to that vagus nerve which will essentially and ideally help control his seizures. I've heard mixed reviews and have my own thoughts about the success of this device, but he's been battling the effects of multiple drugs for too long. It's time to try this next step.
And with all of my faith and trying to turn things over to God, let go of any anxiety and remember this is a fairly minor and routine surgery for the docs.....I'm nervous. I'm anxious and get butterflies in my tummy because it's surgery. It's placing a wire in my child's neck that will never be removed. It's change. A pretty big change.
But it's also a chance for relief for him. It's the possiblity of getting a little, maybe a lot of our little boy back. Through God ALL THINGS ARE POSSIBLE. So that is where I will try and live....WITH GOD ALL THINGS ARE POSSIBLE.
The surgery is July 30th - 9:50am. Will take any prayers you want to throw our way.
So that's some of the biggest news that was planned during the last few months and will take place in the next few months.
What else has happened? Oh you know, little stuff. :)
We celebrated my 39th birthday, Logan's 5th birthday (in the hospital), Nana's birthday, Pa's birthday and Fred's 39th birthday. Some of these we did better at celebrating than others....sorry Nana.
We moved back into our house at the beginning of May, after living with Nana and Papa again for a few weeks. Oh the journey. Which is why Nana's birthday did not get the celebration that it deserves. Truth is, we should celebrate Nana the entire month of May!
We've had wonderful visits with family and friends and are truly enjoying life back in our house. More so than I ever really imagined. We are home in a way we have never been home before and there is just nothing like it.
I've tapped into my creative side and have painted some furniture....which is so fun! Ok, so not much furniture and my creative side isn't huge, but every little bit counts these days. My feet have been a little orange from the overspray on the paint....so that counts.
We have had fun at the beach for a long weekend. Met some really fun new friends who we hope to visit soon and enjoyed Vacation Bible School so very much.
Freddie is now knee boarding and skiing and enjoying ski practices with Fred. I don't know who loves it more, the big Fred or the little Fred. Love seeing them together doing something they both love!
We had a new nurse who was finally filling the 16 hours that we have not been able to fill over the last year and a half, but she was recently in a car accident and may not be able to come back at all. We are praying for her recovery and praying for wisdom and guidance as we seek to fill these hours once again. Oh the journey.
We also had a little hospital stay with Logan not related to his seizures. When he was little we had this episode where he had violent vomiting after eating oatmeal. It happened a couple of times but we always associated it with something else. Well, it happened again recently and landed him in the hospital. He ate oatmeal with apples and cinnamon and loved it. A couple of hours later at school the vomiting started and didn't stop. I happened to be in Charlotte and missed the call from the school so they called Nana. She called me, I finally talked to the school, Nana, Papa and Miss Kim headed that way to pick him up and I headed home after calling Ga Ga to pick Freddie up. It takes a village.
I met Nana, Papa and Kim halfway and, along with Logan's pediatrician, we decided he needed to go to the ER. When we got there they quickly whisked him out of my arms, rushed him in and started bagging him to get his color and oxygen level back up. In all of our visits I have rarely seen the ER staff react like that.
After a night's stay and some testing since, we have learned a few things. Logan is allergic to oatmeal, but not the blood type allergy that we typically associate with food reactions. It's called FPIES and is a gut allergy that some babies get when they start eating food. Most children grow out of it by his age, but he just hasn't yet. We now have an epi pen and a protocol should he accidentally ingest oats, rye or barley. In a little over a year we will maybe attempt a challenge where we try and introduce oatmeal again....but in a hospital setting with an IV in place. I'm just thankful that when he was a little baby, we made it through these episodes unscathed. Oh the journey.
We do have a few more trips planned for the summer....trying to soak in all the adventure we can. Some with Logan and unfortunately some where Logan will have to stay behind. One in particular where Fred, Freddie and I are flying to Wisconsin and Nana is keeping Logan here. Prayers are greatly appreciated for that as well. As nervous as it may make her and as much pressure as it puts on her, she still is willing to do it because it is what's best for Logan. There is no other like Nana, that is for sure. It is heartbreaking for us and will never be okay that Logan is not with us, but we are so thankful to be able to leave him where he would get more love and spoiling that we could possibly give him on the trip!
Some swimming in the lake, an occasional visit to the pool and lots of time settling in to our house is making for a good summer so far.
Finally, I have another request.
One of the things about Logan and his life is that we have never really felt comfortable leaving him in his room alone at night. Okay, maybe I haven't felt comfortable. But there is this thing called SUDEP (Sudden Unexplained Death in Epilepsy) that is similar to SIDS (at least in my mind). They don't really know why it happens, but because of all of the factors that make up who he is, he is at a much higher risk. So I just can't leave him in there to sleep alone at night.
There are a few monitors and devices out there, but they are expensive and don't always work for Logan's seizure types.
There is a new one that a family created because they needed it for their child. Those are usually the best inventions because parents just know. They know stuff that other developers just can't know unless they have lived it.
So this family is in the finally stages of raising money to help further devlelop this product.
Please read about them and if you feel so led, please help them reach their goal. As with anything else, this may not be the answer for our family but it will be for countless other families. And we need to look out for each other and help each other find ways to create more peace and comfort in our lives. One way to do that is to help parents get some sleep at night.
I would also, once again, ask for prayers for this endeavor. That's how things really happen anyway.
Find out more about them at the link below.
https://www.indiegogo.com/projects/epilepsy-foundation-sami
Our next quarter has alredy kicked into high gear. My goal these days is to simplify. Our life, our things and our thoughts. Everything in my being believes that if we didn't all live at such a fast pace with the drive to do everything bigger and better and faster, then many of the issues of this world would disappear. If we remembered to live with values and morals no matter what the rest of the world does we would not lose our way. And if we remembered to fill our minds and hearts and souls with things that are good and pure and loving - the way God has asked that we do - then those things that are filled with evil and hatred would have no fuel to thrive.
I can only change me. I can only be me. And I can only live God's will for my life. Not that any of that is easy, but it's what is mine to do. And the way I live my life IS my impact on this world.
So we'll keep on trucking. Getting it wrong and occassionally getting it right. And looking for the good and simple and right that is still there.
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