Saturday, January 17, 2015

Whose Side Am I On Anyway?

This has been a fascinating process of heartbreak, struggle, acceptance, peace, joy and fear. And not necessarily in that order. I truly thought I was in a good place. I was ready. Miles is coming. I have had false labor several nights now so the bags are packed and the birth plan is printed.

Yet I started to get more emotional. I felt a lot more stress. I had what I would describe as small panic attacks. I was scared and I wasn’t sure if it was because of Miles’s disability or just because I was having another baby. I went on acting normal and functioning the same as usual, but I was shorter with my husband and had less energy for my son. Something was happening and I just didn’t see it coming.

I ended up picking a fight with Bryce one night. We had been having a lot of tough conversations about a plan to become financially self-sustaining in this seemingly impossible scenario.  All the help was putting Band-Aids on something bigger and the options we began discussing upset me tremendously. Our main option was for me to go back to work full time. Even saying the words made me bawl hysterically, not because I don’t like working (I actually miss it), but because I couldn’t stand the thought of being away from my sons when they need me.

I have read so many blogs of other Spina Bifida parents in this exact same scenario. It’s one of the most expensive life-long birth defects so nothing we are experiencing is abnormal. We went from living life simply and comfortably, to feeling like we are drowning. I believed that the fear of this is what was causing my stress but it wasn’t. Finances have never consumed me and I’m not very materialistic. I don’t care about those things and I’m not afraid to go without. I am just so appreciative to God for the beautiful life and family He has given me. There was something different gripping my heart and Bryce identified it.

I had switched teams.

We clung hard to God when we received Miles’s diagnosis and there was no doubt I could not have gotten through that time on my own. But as months went on and I accepted his disability and the possibility of worst case scenarios, I forgot that I still needed God. I became comfortable and complacent and things were back to normal again. The birth of Miles was still far away enough that I didn’t have to be overly prepared but I was far enough away from the initial news that I had time to accept.

As the approach of his due date came near, the realizations became clearer. My son has a disability. He doesn’t perform well on tests and we aren’t sure what the problem is. I won’t get to hold him when he is born. This is terrifying and I don’t know what our new life will look like. I stopped standing next to God looking at fear and I began standing on fear’s side looking at God from a distance. I had switched sides without even knowing it. We prayed for God to bring us back on His side and the next morning I woke up feeling like a different person. No tears, no anxiety, no distrust.

None of this means that the fear doesn’t still exist. It’s present but I’m no longer on its team. Fear is on the other side of the battle field and I will fight it with fury because it steals joy. Nothing can take joy away from having my son. No amount of money. No diagnosis. No nasty doctor. No discouraging ultrasound. No sacrifice.

I’m back on the team of hope, joy, faith and insurmountable love. I know now that God wasn’t going to let me have Miles until I learned this lesson. 

"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." -Deuteronomy 31:6

Monday, January 12, 2015

A Little Patch of Grass

After our surprise hospital stay at 32 weeks pregnant, we have known that Miles does not look very good on Non Stress Tests (NST’s). I have asked many times if there is something else wrong with him and the answers have varied, but mostly the answer is we don’t know. Since then, I am required to get a Biophysical Profile ultrasound twice a week. This ultrasound looks for fine and large motor skills, amniotic fluid levels and he has to practice breathing for 30 seconds in a 30 minute period. At every test, he waits until the 29th minute to start breathing. Every time I ask God to show us he is healthy and to make him breath if he is actually ok. Every time he has passed all the tests, until today.

At today’s ultrasound, Miles wouldn’t move at all. He wouldn’t breath. The tech was almost violently shaking my abdomen, but still nothing. I wish I could say this surprised me, but nothing does anymore. The doctor decided to follow with an NST which was pretty unnecessary to me since I already knew what would happen. He didn’t do anything during the NST either. Normally, all of the results would send me back to the hospital but there is an overall sense of what’s the point? I need to have these tests redone tomorrow and I have a feeling if they are the same, I will be in the hospital again.

When the medical staff talks about my son, they have a sad, solemn look on their faces and don’t look me in the eye. They use words like “Unresponsive,” “Non Reactive” and “Under Performing.” They say things like “Wake up baby!” None of these results are new or unexpected but today they just affected me differently. The tears flowed easier today and fear gripped my muscles. All my nervous habits have come to the surface. These words are describing a real person. This is a real life. This is my son’s life. I want to believe that he will be ok. Some days I truly believe it and some days I’m just convincing myself.

So many people have graciously and selflessly helped us through this time. There has been emotional and financial support that we have desperately needed. Eventually my parents couldn’t bear that fact that every dime we have and that is given to us, just goes to doctor bills and all fun things have gone out the window.

For a long time I have daydreamed of having a patch of grass in our yard for our kids. My parents paid for us to get this patch of grass but it hasn’t been installed yet. I spend a lot of time staring at our dirt yard, fantasizing about this little piece of life growing in it. I picture getting to watch my boys play in this grass, watching them grow and hosting friends in our yard. I used to imagine a life of jet setting and excitement but now I just daydream of a little piece of grass in my yard. It seems like such a luxury now. Something so simple will mean so much.

Most people won’t understand what this grass will mean to me. It has almost been a little token of hope through this all. When I picture Miles at his healthiest, he is laughing and giggling in the grass and playing with Weston. I have tried to pass the time of anxiety of serving others in whatever way I am capable as I have accepted so much service lately. But in my quiet moments, I stare at this yard and imagine what is to come.