Today is probably the worst day to post anything. My personal way of dealing with bad news, stress or anything hard is to have my day of crying and curling up in a ball... then pull up my breeches and continue on. Enter most Instagram or blog posts. The refined, almost have it together Jessica.
I wish I could say I was always refined. That I accept most news and Dr. visits with grace and ease.
I don't.
But what I've been thinking about a lot lately, ironically, is that I need to be more transparent in these moments. For the sake of anyone who cares to try and understand. Mostly for the sake of any mother in my shoes who would happen to stumble on this blog anytime in the future. I don't want to ever make our life appear fluffy and carried on a cloud of perfect attitudes. On the other side, I don't ever want to appear as a complainer or without hope.
Most days, we try and project our faith that God is in control. We DO BELIEVE THIS without a shadow of a doubt. This is our life, our rock, our TRUTH! But I'd be a liar if I pretended that we never have bad days. That our human nature of worry, fear and trying to figure everything out ourselves doesn't creep in on a regular basis.
God never promised a life free of challenges or struggle. But He did promise that He would always be with us and help us through it.
It takes effort and prayer and a lot of work to accept His peace and promises. It takes focus and a constant state of oneness with Him to tune out the world and hear only what He has for us.
It's hard.
It doesn't come easy.
But it's worth it.
In this moment, I am in the midst of struggling to allow His peace to overcome my worry and my overwhelmed heart. Oh my gosh we are overwhelmed.
A couple of weeks ago, after receiving the news about Griffins sleep study {he has moderate obstructive sleep apnea}, we were scheduled with 3 follow-up Dr. visits. First was ENT, with the probability that Griffin would have to have his tonsils removed. At first, I freaked! Because I HATE him having to have surgeries. But after another impromptu scope down the throat and a now petrified son who fears doctors {NEVER has he feared them, NEVER. He once had 5 viles of blood drawn, sat and watched them and never cried or flinched. Not once! He's now ruined.} ...after that traumatic visit, I walked away WISHING for a tonsillectomy. He couldn't promise it would work, his opinion was that Griffin's jaw has gotten to the point that it is not holding his tongue in place while asleep, causing him to stop breathing. We knew this would happen eventually. Just not now. Not at 4 years old. Not now. Not now. Not now.
We still have 2 more appointments to go through before this specific issue is decided. One with the sleep disorder specialist next week, where we will discuss his opinion and the option of using a CPAP machine. This sounds like a good, non-surgical solution... but we know it's temporary. The inevitable is surgery. Which is our final appointment with Craniofacial, where we will discuss the third option of beginning Griffin's jaw distractions. The dreaded distractions that we so easily could talk about when he was a baby... because it was so far away. We still thought we had years. We hoped we had years before this would begin. But here we are. The hardest thing? It has nothing to do with his face and what he'll look like, which is what the doctors always assume is your concern. Are you kidding me, how shallow do they think we are? But unfortunately, we have learned, this is what most parents are worried about. It's sad. Our worry is Griffin himself. The pain, surgery, and having pins in his face that we have to twist every so often to help that bone stretch. Ugh. It makes me sick. Physically sick. I just want it to be me, please oh please if I could just switch places... But, God, I will not forget your promise. A physical sign of your plan. His extra rib. When they first told us that they use a bone graft from a rib to place in his jaw... and that Griffin was born with an extra rib... I thank you for such a tangible promise of your hand in his life...
I wish I could stop there. We have been in prayer and working our attitudes to align with Gods as we await our appointment next week... But yesterday I took Griffin to his new hand doctor to establish care as we've been switching everything over to the U of M system. It was Johnny's birthday and I told him I was fine going by myself, it wasn't going to be a big deal. If anything, it would be fun because Griffin has been so proud of his little thumb lately, learning to move it at the base.
Griffin was born with an underdeveloped left thumb (hypoplasia thumb). He is missing muscle at the base and in his palm, also missing some key bones and joints. Which means he has trained himself to move it at the base (something he is VERY proud of) but he cannot bend his thumb or independently move it enough to pinch with his pointer finger. He has adapted well, his OT at school says he doesn't even need therapy because he is doing great! Our previous Dr. had given us hope that eventually when Griffin was bigger and there was more to work with; he could have surgery to add muscle on that side, that they could rearrange some tendons and ligaments to give Griffin more motion and use out of that thumb. It was just a waiting game, to see how Griffin adapted.
So the fact that Griffin was moving his thumb at the base was HUGE to us! HOPE! Right?! Well, my bubble was popped yesterday. Our new Dr. is great, let me say that first. But his opinion (I stress opinion) is that he personally would have surgically taken care of Griffin's hand at the age of 2. That we need to get moving. The options and decisions we have to make are so complex and so heavy, I'm not ready to share them yet. Johnny & I have a lot to pray about. A lot.
But this sent me over the edge.
I'm just being honest.
We haven't even figured out facial surgery that may happen this year. Now hands. I am desperately thinking of the perfect hole to dig and climb into with my family and hide. Hands off people. Hands off my boy.
Yesterday during X-rays the tech told Griffin to put his hand on the table. Griffin instinctively put his right hand up, he's right handed, and he's four. The tech says "No, we need pictures of your bad thumb, right?!"
Excuse me? Bad thumb? *insert not nice thought and name calling in my head. not proud. just honest.*
"Silly Griffin, put your SPECIAL thumb up there so they can get a picture!" I responded LOUDLY.
It's not the techs fault. We live in a society that anything out of the ordinary is "bad" and needs to be fixed. We are conditioned this way. It takes extra effort, a positive open mindset and literally seeing through the eyes of Jesus to see people for exactly who they are. That this is their normal.
7 years ago this week, Hunter was born with 2 toes on each foot attached to each other. The first thing we all thought and our doctor confirmed "We can get those separated!" I seriously THANK GOD that the foot specialist we were sent to saw this as Hunter's normal. He gave his medical opinion, saying separation would be very painful... & that keeping them attached would not effect his ability to walk correctly. But the part I remember the most was his relaxed "what's the big deal" attitude. I remember walking away, new young parents, feeling like idiots! We got in the car and it was like, "Yeah, what is the big deal?!" Now, Hunter thinks they are so cool! This year, he has made a new best friend in his class and after a sleepover at his house, he came home proclaiming that his new friend had toes just like him! I mean, seriously, how cool is that?!
So when the first thing the nurse said to me yesterday was "When will they fix Griffin's jaw? How will they make his ear bigger?" Trust me, I'm asked the jaw thing all the time, for medical reasons. Her question was NOT medical, it was based on looks. I have NEVER been asked the ear thing. I said "Um, we are not touching his ear. It's perfectly normal. Perfectly perfect!"
Yeah. She left that alone.
Folks, this is me in the midst of finding God's peace. I'm still allowing some anger to dwell in my heart unfortunately. I don't like exposing myself with any kind of bad attitude still in existence. But I need to. Because if you are a mom feeling this way for whatever reason, don't feel like a horrible person. It's the human nature in us. It's a process of receiving the worlds perceptions and opinions, then deciding what to do with them. Just promise me you'll move on. Stop clawing at the side of the pit and trying to get out by yourself, reach up and grab the hand of the One who has promised He'll help. I'm trying ... I can feel the warmth of the light of hope is close. Why is it so hard to turn and let it shine on us...
Last night was dark. Spiritually dark. I sobbed and sobbed. Ugly cried in the tub. Soaked my pillow with tears and felt guilty for crying while laying next to my husband who feels the same way just deals in a different form. I kept saying "I just need to fall asleep. I just need to fall asleep." The morning always brings joy. I did feel better this morning. But this time around, it's still a lingering heaviness. This morning I'm frustrated and angry and overwhelmed. The joy is here, God has not abandoned me... it's just sometimes circumstances in life weigh a little heavier and we have to work a little harder to allow our hearts, minds and attitudes to align with His.
I'm not giving up. Don't give up either. Whatever is weighing on you...
So this morning while digging through my pile of appointment reminders, maps to various offices and medical release forms... looking for today's ophthalmology reminder... I threw it all. It was stupid and childish. I sobbed. I might have growled. You know, the UGH kind of "I'm so flippin ticked and so over this" kind of growl? I know. Not proud.
Again, I beg, could I just take his place?
I keep holding in my line of vision the healing miracle that happened just weeks ago. God, you healed our sons spine. For only a short time, or forever, we don't know. But it doesn't matter. In this moment when we had expected a spinal fusion, you granted us a miracle of healing his spine to the point that he is nowhere near the radar of a fusion. I remember this. I know this. I have not forgotten this.
I trust your wisdom will help us overcome our fear and worry for our son, that we can think logically and clearly. That we can make the decisions necessary to keep him true to who you have designed him to be, not based on what any Dr or person thinks is 'best' for him.
The surgeries in our future will be led by You and covered in your protection. I trust this. I believe this.
Right now, God, you know my heart. You know it's taking everything in myself to overcome the opinions and worries of this world.
We are focusing on You. We are focusing on the face of our child... the one you have entrusted in our care. Always, always, always... we pray Your Glory shines bright from his life...
