Another Year. Another January. Part 2. 

I have put off writing this blog. I honestly don’t want to dive into it. To re live it. To dig up the emotions or rather have the emotions come bubbling to the surface. I’m afraid that once I write it, once I let this become black and white in words, it becomes real. Right now I don’t know how much more real I can handle. 

At the end of January Olivia received yet another life-changing diagnosis – seriously at this point you would think I would be a pro-  

Autism. 

This was not a shock to me. I had known for several years now that this was a possibility. I had that gut feeling. Mom instinct. Call it what you will. However, seeing it there wrote in black and white on her chart.

  It was no longer a possibility but reality. 

We spent three hours in the doctors office that day January 27th to be exact. I answered question after question, they did lab work, Olivia answered question after question, they watched her play and interact. After 3 hours it was decided. Official. “Olivia has mild Autism” Despite the fact that I knew it was coming, it felt like someone had punched me in the stomach. I was given several instructions an outline of how the next few months would look. A thousand questions flooded my mind. None, of them could be answered by the doctor. Questions that involved quality of life, college, bullies, things most parents wonder but here I was facing the dark reality that Olivia’s life may not be what we imagined. 

  • Can she hold down a job if she is constantly throwing tantrums because she can’t control her emotions? 
  • School, will the other kids be understanding? 
  • Can she do extracurriculars and not feel different? 
  • Will she be able to stay in a mainstream classroom?
  • Will she ever not be dependent on me to help her vocalize her needs, and emotions? 
  • How are we gonna pay for all the therapy? 
  • What does our life look like now? 

Things we won’t know until it happens.  Then comes the parenting questions. How do we tell other people? How much do we modify for her, and how much do we make her cope? Again, questions without real answers. 

Already at the tender age of just turned 5, we have dealt with some pretty emotional events. Olivia being bullied because she needs to wear a sensory vest –she was so excited to get it, and now she won’t touch it- .  Olivia asking “why other kids don’t understand her?” because she processes things a little different or because she can’t handle too much stimulation. 

It is heartbreaking to watch your kid struggle with things they can’t understand. It’s a hopeless feeling knowing there isn’t much you can do to help. It’s frustrating knowing society just hasn’t caught up to your kid yet. 

Friends mean well and say things “she doesn’t look like she has autism” or “I never would have guessed”.  I wish someone would tell me what Autism looks like. (Another long blog, I’m sure). To me Autism is my child screaming for an hour because I need to clip her toenails-something that because of her sensory problems causes her physical pain. To me Autism is my child needing a schedule of the days events, needing to touch me 80% of the time. To me autism is my kid getting so frustrated at herself that she loses communication skills. Things that nobody else sees unless you are with her 24/7.  

If I am being truly honest the past few months have been excruciatingly hard emotionally. I’ll say it again. I’ve wrestled with God. I’ve yelled at God. I’ve ignored God. I’ve yelled some more and wrestled even more. In my head I know that God has a plan, but sometimes I question if my heart is able to take it. Then I am reminded that I am not meant to shoulder this alone. I am not meant to carry this burden. I’ve said it before and I’ll say it again God has mighty things in store for Olivia. I am blessed to have a front row seat to watch it all play out. 

Olivia has such a sweet, caring, servants heart. I am truly excited to watch how she uses her gifts to further the kingdom. 

Some days are hard, others are impossible, then there are the days that are simply easy. It’s the days that are impossible, the days that I sit back and wonder how we even survived, those are days I live for because those are the days where I can see God working. See him working in her, see him working in me. 

Another year. Another January. Part 1.

A few years ago I wrote a post about a pretty terrible January we had. You can read it here. Ironically enough, this January was even tougher. I remember a few years ago thinking, this is terrible is it ever going to get better?  It did get better. Then…

BOOM.

2017

2017 has been a year for the books, and we are only 38 days in.  On the first Olivia started complaining of some pretty weird symptoms, abdominal pain (this wasn’t new) but she stayed up all night swallowing like something was stuck in her throat. On the second I took her to the ER (this in itself was a giant ordeal). The first ER sent her home, I was not impressed by this doctor, so I called her regular pediatrician who agreed to see her within the hour. They admitted her to a different hospital for observation. At this point Olivia was turning red and her oxygen levels were dipping into the 80s each time she did the weird swallowing thing. She tested positive for the flu A and B, so we settled in for a night of tamiflu and IV fluids.

Twice that night Olivia wet the bed. This should have been my first clue that something was seriously wrong… Olivia never wets the bed. EVER. Not since she was 2 years old.

Around 7 am – I am a little fuzzy on the time frame- I woke up to Olivia doing the swallowing thing. AGAIN. When I looked over it was every mom’s worst nightmare. I witnessed up close and personal Olivia’s eyes rolling back in her head as her tiny body began to seize inches away from mine. Frantically I called for the nurse, because at this point my nursing education was out the window. My mom called, after I responded to her text checking on us with a simple “Come up here. NOW”.  Honestly, my brain was spinning in a thousand different directions, yet nothing was making sense. I remember telling my mom to call Matt because I hadn’t even got a chance to call him. I remember them calling a pediatric code blue. I remember watching helplessly as the drugs had absolutely no effect on my little girl, she continued to seize. I watched them draw blood, start another IV, call the children’s hospital. I watched her continue to seize. At some point Matt got there with Sophia, she was supposed to stay with me that day at the hospital. After all it was just the flu. Apparently my mom, had not got a hold of him because as he walked into his little girls room full of doctors and nurses his face was not one of someone who knew what was going on. I walked out and attempted to explain what was going on. I’m pretty sure all I managed was “she won’t stop seizing” between sobs.  My brain wasn’t working but I knew that at this point it had been 20 minutes and that is a long time to seize. I spent the next 25 minutes watching them pump my daughter full of more drugs and draw more labs. She was still seizing. During this time they asked if we wanted to go to the Children’s Hospital in our state or the one that was a little closer out of state. We chose in state because that is where all of Olivia’s other doctors are. However, it was too foggy to fly, she would have to go by ambulance. Which meant she had to go the children’s hospital out of state because it was closer and their ambulance was already on site. After 45 minutes Olivia stopped seizing. She was being loaded up into an ambulance, she still hadn’t woke up. I rode in that ambulance in shock. I barely said two words to the driver who was my companion up front.

I stared out the windows and thought this was never supposed to be me. 

I am not supposed to be the parent in the ambulance. I am not supposed to be here. The nurse in the back asked me if Olivia was able to move all of her arms and legs. Yes, yes she could. Why what’s wrong was my response. Olivia was moving everything but her right arm is what I was told.  At this point I still wasn’t crying. Not since my one outburst when I first saw Matt. Shock. Adrenaline. Call it what you will. We arrived. Olivia still wasn’t awake still wasn’t moving her right arm. They did a CT, and sent us up to the ICU.

We were greeted with a team of doctors outlining a very long hospital stay. It didn’t look good at this point. It took Olivia 12 hours to wake up. It took another two days for her to fully be able to walk and talk again. We were sent home after several days with the parting “we think its viral but we aren’t really sure”; and several follow up appointments.

TWO DAYS later…

We were back in the ER, she had broke out in hives completely covering her body from head to toe. An allergic reaction to the anti-seizure medication we were told. Another hospital stay to determine if it was an allergy to the medication or if it was just the mysterious virus rearing its ugly head again.  Longer story short..we still don’t know.

We still don’t have answers to any of it. 

We may never get the answers we so desperately want. The reassurance that this won’t happen again. That is was a fluke.

Here we are a month later and she seems completely fine, it is like January was just a small bump in the road.

I’ve wrestled with God a lot the past few weeks. Why Olivia? Has she not been through enough? Does she not have enough diagnoses in her file to last her a lifetime? What good can come of this?

In my heart of hearts I know that God does have a plan. That Olivia will have a miracoulus testimony one day. Because that is what she is right now. As I watch her play outside. She is a walking miracle.

While I can only see the pieces of the puzzle laid out before me, God holds the whole puzzle in his hand. He sees the finished project. I may not know what lies up the road, but I know in the end my God is bigger. He loves Olivia far more than I ever could.

I am thankful that God gave me more days here on earth with Olivia. That he chose me to be her mom. That his grace is sufficient. That he is in control, and that even in my moments of doubt he was there comforting me.

Isaiah 43:2-3 says “But now thus says the LORD, he who created you, O’ Jacob, he who formed you, O Israel, “Fear not, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through the fire you shall not be burned, and the flame shall not consume you.””

This verse speaks to my heart of doubt. For when I am overwhelmed by the difficulties of this life I know that God is for me. So even when after all of this at the end January we received yet another life-changing diagnosis. I know that God is making all things for his good.

…..stay tuned for Another year. Another January. Part 2.  Where I dive into the other diagnosis Olivia received this January…Autism and where I find God in all of this.

 

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