Motherhood and Mountains: One little girl's story of overcoming impossible odds

Sometimes in our lives, there are moments that shape and define us. Other times, it is a specific person who just changes our perspective on everything we ever thought we knew.

 For many of us, this whole new world is opened before our eyes, when we become a Mother for the first time. I was no different…well to begin with anyway.

 I was born to be a mother. It was all I ever dreamed to be. I babysat every little cherub I could.

 I pursued a degree in Early Childhood Education and began teaching at a young age. I knew one day it would be my turn to have my own and while I waited for that time to come, I enjoyed everyone else’s kiddos!

  

I just assumed that I would be able to get pregnant with no issues and that was my first curve ball. Two years after fertility treatments, I was still childless and felt so worthless that I couldn’t bring a baby into the world. It was the only thing I wanted my whole life and I couldn’t make it happen. We were trying in between my husband’s deployments and at the 2 and half year point, finally-we were expecting!! I couldn’t stop crying when I found out and in that moment, my whole life shifted and became about her.

However, rather than being able to enjoy the experience I had so long waited for; I developed Hyperemesis gravidarum. I spent 2/3 of the pregnancy violently ill and lost 30 lbs. One complication after another kept arising, all while my active duty Army husband was away training. I had preterm labor issues and was placed on bed rest. I remember lying there and in all my suffering, just telling myself over and over how worth it this would be when it was over and that everything would be fine. It was a challenging time, but little did I know it was just the beginning of the challenges I would face!

One freezing January afternoon, my amazing daughter came into this world! I was just so ready to meet her and have the hard part be over and let things finally be normal and experience what I had built up motherhood to be my whole life.

I was handed this tiny little person and couldn’t stop crying at how small she was. They took her away to clean her up, but it quickly became apparent that something was wrong. The nurse wouldn’t stop suctioning her out and I wondered if she was choking. No one was telling me what was going on. I kept asking the midwife “Where’s my baby? What’s wrong with my baby?”

 It was not supposed to take this long. I saw a doctor come in and immediately go over to my child. I was now panicked.

After what seemed like an eternity, the doctor came over to me and explained that she was born with a cleft palate and would need surgery. I had never heard of this, but when they brought her over; I saw a big hole in the roof of her mouth and going down towards the back of her throat. I saw no end to it. They started bringing me special needs bottles and pamphlets and telling me how to care for her, as I sat there in shock.

I remember the first night, laying there thinking of all the mother’s all over that hospital, nursing and cuddling with their babies. Meanwhile I was sitting there, suctioning her out as she choked on every 1/10^th of an ounce I gave her and being terrified. I cried harder than I had in a long time those first weeks.

There was no time to think or breathe or process anything, because less than a week after she was born; we were sent to The Children’s Hospital in Denver for a full day of evaluations, by every specialist you can imagine. I walked in the lobby and thought, “This can’t be happening. Not to my child.” Granted I am sure that is how all parents feel, when their child develops a life altering illness or gets a scary diagnosis and I’m sure it didn’t help that I was less than a week postpartum with especially raging hormones! As I got into the elevator to a floor of the hospital that would become very familiar to me, I started sobbing and hyperventilating, as my husband tried to calm me down. The day was a blur. All I knew was she was 6 days old and I was trying to pick her plastic surgeon.

 I tried to adjust to this massive, unexpected new life in the weeks that followed. I felt like I was at capacity of what I could handle, but there were still bigger hills to climb.

 A fever when she was a baby led to a hospital stay, where it was discovered that she had severe sleep apnea and would stop breathing up to 10 seconds at a time and she was permanently put on oxygen at that point. For many of those first months of her life, I never slept. They told me if she ever even dosed off without oxygen, she could end up with serious brain damage or die. I lived in fear of that happening and was always shaking her awake. I felt like I was being robbed of every experience I had dreamed of. Rather than staring at my little angel sleeping peacefully, a feeling of panic would rise as she would fall asleep and I would run to get her oxygen or try to wake her up.

Through all this, she also had severe feeding issues and had to be on a liquid diet, failure to thrive, pneumonia, chronic lung disease, severe sleep issues, developmental delays, hearing loss, multiple ear tube surgery, severe reflux resulting in aspiration, just to name a few of her health challenges. You name it and it seemed to happen to us. It was some of the darkest times of my life, watching her struggle what seemed like every day.

 I have always been a person of deep faith and this was the time in my life that I wrestled with it pretty intensely. There wasn’t a day that went by in her first year of life, that wasn’t filled with pain, sickness or terror. Yet there also wasn’t a day that I wasn’t reborn and refueled by this intense love and bond with her. There wasn’t a moment that I would stop fighting for her. I knew that if we could just get through this, she would grow to be one of the most extraordinary people the world had ever known.

When she was 10 months old, she finally got her cleft palate repair. Her Dad was in Afghanistan and I knew I had to be strong to do this without him. I remember going out into the waiting room after they took her back and trying to call my husband on a calling card and not getting through and just sitting alone with tears rolling down my face. It was the longest 4 hours of my life.

 I finally got called into the recovery room. I heard mother’s everywhere crying and being escorted out, because they couldn’t bear to see their children be in such pain.

I knew I didn’t have anyone else to come in besides me, so I had to be tough. She needed me.

 I walked in and saw her little face coated with blood and my heart shattered. Every time she’d whimper, they’d put more medication in her IV. I can only say that my faith gave me a peace I couldn’t understand. I gently picked her up and sat in a rocking chair with her and with all the chaos surrounding me, started softly singing “Jesus Loves Me” and I knew I wasn’t alone.

It was an uphill climb after that, but this was the finish line I told myself. If we could just recover from this, I could finally breathe and enjoy my life with her.

 

I wish I could tell you that she recovered just fine, but we continued to face so many obstacles and she was in a constant rotation of therapies to try to help her catch up on all her developmental delays, that we assumed were because of so much time being sick and in hospitals. There wasn’t any part of me that thought she wouldn’t get on track with her peers, once she got physically healthy.

However, as time passed, she didn’t “catch up.”

 I read an article about early intervention and autism and immediately became concerned that my daughter had some of the warning signs. When I initially spoke to her developmental interventionist, she thought her positive qualities outweighed the warning signs, but it would be a wait and see game. But as months went on, we knew something was wrong. We could call her name 20 times and she wouldn’t turn at all. She wouldn’t talk. She wasn’t learning sign language, despite my constant efforts. She wouldn’t point and still wouldn’t eat solid food.

At this time, her therapist approached me and I said I would do an autism checklist online that day. Everything within me dreaded sitting down to that computer, but I knew I had to know if I was to help her.

As I checked off one thing after another, the tears started falling.

 “No God, this can’t be real. Not this. It isn’t fair! Hasn’t she been through more than enough?” But it was real. On March 23^rd 2012, I heard the words no parent wants to hear.

“Your daughter is autistic and has global developmental delay, an eating disorder and sleeping disturbance.”

How did I ever think motherhood would be easy, magical, and all around dreamy?

My mind started racing with questions. What would her future be like? Will she ever talk?

Will she ever call me Mama? Will her life always be this hard?

I let myself wallow in self-pity for about 24 hours and then I decided I would not give in.

 I would fight for the best future she could possibly have. I would do everything I could to help her. I had to give all I was, to help her be all she could be.

That defining moment of my life was almost 6 years ago. Today, my daughter is almost 9. She is quite literally the best person I know. She went from no speech, to talking my head off all day long. She has the most beautiful smile you’ve ever seen and every time I see it, I know I would choose her and do this all again.

 Thanks to early intervention, amazing therapists and a spirit that refused to be broken; she is completely developmentally on track with her peers and amazed everyone who ever worked with her. She never gave up. She never took no for an answer. She never stopped believing that she could change the world and I truly believe that she will! She already changed my life and many others in her short, but amazing time here.

If you asked me now if motherhood is every thing I thought it would be, I would say. “Absolutely not!” It has been nothing I anticipated, nothing I was prepared for; but it has been the love I always dreamed of. I know nothing else, like this love I have for her. Being her mom, has taught me more about the world I want to create and the beauty and resilience in life; than every experience I have had till now, put together!

Even When It Hurts

 We live in a culture saturated with a “Do what makes you happy” mentality and this is rampant in the church as well. We sometimes can feel cheated when we are given a life where it is a struggle to find happiness.

My life was drastically changed when I realized that God didn’t promise being a Christian would make me happy. That life is not purely about my own happiness. That my life is about how I am of Eternal value and how God can use my story to speak to another person for His glory.

 This freed me in so many ways, because I stopped blaming God for my depression and realized that if I wasn’t going to FEEL happy, I could still walk the right path and be who He called me to be and that feeling Joy would be a daily choice I would have to make.

They are not at all the same thing, Joy and Happiness. When The Bible says to be Joyful in trials, in suffering, in persecution…what normal person would feel joy in those things? No one..Because joy is not a feeling, like happiness; it is a choice to dwell on the goodness and faithfulness of God and on our eternal hope, in the midst of perhaps hopeless situations.

Sometimes, we can start to sink into despair when we put our eyes on our circumstances. I know because I’m there right now and I have been there more times than I could ever recount in my troubled life. I am looking around at my circumstances and not seeing an immediate way out and my eyes are starting to wander. Rather than looking at Jesus, I am looking at the waves and I can literally feel my feet failing and me starting to sink.

Maybe you’re experiencing heartache, the loss of a child, the loss of a job, the death of a loved one, divorce, abuse, health problems, financial problems…Whatever you are going through right now and what I am going through right now, God sees it. He knows the pain. He knows when you cannot find the words. He knows that your heart is tired. He knows you and He sees you and He is still worthy. He still has a good plan and He still deserves our praise. In the darkness, in the doubt, in the endless pain; we have to choose to fall on His grace and praise Him even when it hurts.

I used to believe in the depths of my soul that God could never use my life as a testimony, because I don’t have some “God cured my cancer, took away my depression, purged me of my addiction” kind of story. I just live it and I walk through the trials and they never really ever seem to stop. I’ve been accused of not being “discreet” enough; because I’m pretty open and honest about what is going on in my life; for better or worse. But there is a reason that I am and it is a choice. How can God show His power through me, if all my prayer requests are secret, if all my struggles are kept in the dark? I want people to walk through the valley with me, so that when the sun breaks through and God shines, they can see it and their faith can be encouraged as much as mine is.

So keep watching the train wreck that I feel that I am right now, because still when a train goes through a dark tunnel; you don’t throw away the ticket and jump off. You sit still and trust the engineer. I am choosing to trust that God is orchestrating all things for my good right now. Even though His plan is totally lost on me!!

 

https://www.youtube.com/watch?v=hrSJwO5dJXg

 

 

Not Afraid of the Dark

Caitlyn has been having nightmares lately and it's had me feeling bad that she can't tell me what she's thinking or that she's scared or anything about it,really. 
 I focus so much on keeping everyone updated on all the positive advancements Caitlyn makes, but that doesn't mean that we don't have sad or hard days with this autism we face daily.
 I've been thinking alot lately about just the story of Caitlyn. The two and half years to get pregnant with her,the really rough pregnancy,the birth defect and everything that followed with her health. I think about her future,what struggles she might encounter and what way I can possibly save her from as many of them as possible.
   I think about the journey of faith and despair,trust and doubt,peace and chaos that God has brought me through;knowing this will be the case for the rest of my life on this earth. 
I read a quote today that really speaks truth to the situation that I am in daily. 

 "When a train goes through a tunnel and it gets dark, you don't throw away the ticket and jump off. You sit still and trust the engineer.”

There have been more times than I could possibly tell you,in my life that "going through the fire's of refinement" felt too unbearable. I wanted to jump out of the fire so many times and just throw in the towel,but at the end of the day(or month or year or however long it took) I'd find my way back to my faith and find that fighting God took far more energy and pain,then just trusting him and letting him give me peace. 
Sometimes,I've felt blindfolded during this entire process with Caitlyn, not knowing what direction God was taking us in,and I admit not being TOTALLY sure at times that he loved her more than I do and would really choose what was best for her. It's challenged me in deeper ways that you can imagine watching her be the one who struggles in life,rather than me. I would take it upon myself one thousand times over and still believe that God is just. But to still believe in his goodness,grace and justice when I watch what she's had to overcome,has taken my faith to a new level.
 I find myself in the midst of struggles oftentimes being whittled down to the absolute core of my being and staples of my faith. Here's what I know that I know at the end of the day.

1.God is good,because he gave me Caitlyn.period. In any form,with any problems she came with,not having her could never,ever be better. At the end of every day,when I'm tucking her into bed,I tell her- "Mommy wouldn't trade you for anything in the world,EVER." and she replies "EVER,ever..." and then I tell her, "I love you so much" and she says, "SO-SO"

2.God is wise,because he carved something beautiful out of a life of hardship for me,that was ultimately for my good,making me the person I am,knowing I would need this fighter's spirit and the strength to never stop climbing and never give up,so I could fight for Caitlyn.


3.God is with us. I'm reminded of the poem "Footprints" and it might be my tendency to look back and see only one set of footprints and immediately accuse God of leaving me,but during the most fragile moments in my journey through motherhood,I know He was carrying me.


4.God is faithful,even though I am so faithless.Many have said at some point in their lives, "If you only knew how bad I was,you'd know God wouldn't accept me,couldn't love me,wouldn't take me back."  And I am guilty of this,truly. I struggle to find 2 minutes in the day,where I can quiet my mind and spend time with God. The best I can do is,what I have tried to do and make him my best friend. Though I might not get much sacred time with him,he is always there,right along side me. I call to him for everything,I rely on him for strength and wisdom and pray that in some little way,He might choose to use me somehow.


5. God is merciful. I know no matter what level of understanding Caitlyn might be at,that she is HIS. He created this amazing person and He calls her by name and her soul belongs to Jesus.


6.God will always,always know better than me. Now,this is a hard thing to swallow when things are going wrong and I know that better than anyone. But I also know,I've tried all the other directions you can go in and the only one that brings me purpose and any sense of peace,is His way. This is my daily tight rope walking act,I'll tell you. Because,as a parent, you of course want your child to be happy and be healthy and have the best life they can possibly lead and I think that's a God given desire and totally normal. But what happens when things go wrong and they're not healthy and you have to question what their quality of life will be? Do you, as the above quote says,throw away your ticket and just decide God's taking this train in a direction you don't like or do you trust that you'll come through the tunnel to the otherside,through God's careful navigation?


I have chosen to trust,on the best days,on the worst days that God will navigate me better through this journey than I would do on my own. My heart aches as I write this,cause it literally hurts to trust this much about someone I love more than life. Does trusting God for your child mean you don't do everything within your human power to help them,make them happy and set them up for success in life? No,I will never stop working with her to make sure she can have the best possible life. I will never stop believing the best for her future. I will never stop trying to protect her from anything that might hurt her. That's my job as a parent,it just doesn't hurt to know that Caitlyn and myself have a heavenly parent who's looking out for us always.