No one tells you what to do when your baby isn’t healthy. 

“Do you want a girl or a boy?”

“It doesn’t matter, as long as it is healthy”
This is a coverasation every expectant parent has with almost every person they come into contact with. Every. Time. 

I’m pregnant with my third baby. We have already been blessed with two beautiful girls ages 5 and 1.  We have had the above conversation countless times. Even more with this pregnancy:

“Ya’ll need a boy”

“We would love a boy, but healthy will do just fine.” 

Everyone assumes their baby will be healthy, but no one is ever prepared for the exact the opposite. 

Our second was born with a very mild airway defect. I swear I’ll never know what a normal baby breathes like. Luckily, she is perfectly healthy now. Something, I don’t take for granted, and realize it could be fleeting. 

You see our first was born with a much more difficult form of the same airway defect and we watched her struggle with it and it’s side effects for three years. She was also born with a mild heart defect. Along with those she struggles daily with OCD, and sensory processing disorder. However at age four,4, just when we thought we had finished our struggles. EPILEPSY. 

Now at the tender of age five. She faces a lifelong battle of medication side effects, and side effects of multiple seizures almost daily. 

No one and nothing can prepare you for an unhealthy child. No one tells you that you will spend hours asking God why. That you will cry more tears than you ever thought possible. That you can love and hurt so deeply. No one tells you that you will go to bed praying your child is alive in the morning. No one tells you the fear you have when they don’t wake up before you which is rare and you have to go check on them; praying they were just super tired. 

No one tells you, your eyes will be opened to a whole new world you didn’t know existed. 

No one will tell you that having a “unhealthy” child may be the hardest thing you have to do. 

Everyone will tell you it will be the biggest blessing you will ever experience.

It will change your life. The small moments truly become the big moments. Life lessons are learned. More love than imaginable is given and received. 

While everyone prays for a healthy child. I am thankful for the “unhealthy” child that has taught me so much about life. 

I pray for a child that will bring their own personality, talents, perspective, and love into our family in whatever way God chooses to bless them and us.  

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 […]

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America. Your not great. 

 America. Your not great. Yes, we have many things that we take for granted and should be thankful for but America:  WE are not great.  America, we have raised a generation of kids now adults who feel entitled to whatever they want. Who feel as if when they don’t get their way then it’s okay […]

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Dear Laryngomalacia 

Dear Laryngomalacia, You came like a thief in the night. You snuck up on our family slow and gradual, like maybe you wouldn’t be caught. It was a few pounds lost here, a few there.  A cold that wouldn’t go away, the cough that never stopped. The sunken eyes. The choking.  Until 6 months later […]

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Mom. I see you. 

To the mom who wants to give up. I see you.  To the mom who feels like a failure. I see you.  To the mom who doesn’t have it all together. I see you.  To the mom who thinks the unimaginable. I see you.  I see you. I see the sadness in your eyes. I […]

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The death of my 4 year old’s soul a.k.a the bouncy ball. 

The soul crushing wails of my child could be heard throughout the neighborhood as her little 4 year old heart broke into tiny little pieces shattered by none other than me. Her mom. Her protector.  A simple task was all that was required. Carry her cup AND bouncy ball inside. What?! Two things call me […]

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Bedtime Musings

Tonight, as I sit here rocking my 4 year old to sleep several things occur to me.  First, the house is so peaceful when it’s dark and quiet and the world is asleep.  Second, in 10 days the quiet will be over.  Third, in at most 10 days my baby girl will no longer be […]

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The Ugly Truth of a Child with Sensory Deficits

You have a child that looks healthy as can be, and for the most part they are. At least in our case they are. Olivia has outgrown most of her major medical hurdles. She has survived Laryngomalacia, battled dysphagia, lives with pulmonary valve stenosis. She has conquered speech, food, physical, developmental and occupational therapy! The […]

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Why I chose to give up half our income

So since, my hiatus from blogging, several topics have came and gone that I could write about. However, as we are 11 weeks away from starting a new family adventure. I will start with this one. Currently, I’m sitting at home because the roads were too icy for me to get out and go to […]

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