Wednesday, October 17, 2012

One Year Later...Reflections

One year ago today, I got the call that would forever change our lives. I was talking to Cole about how much I was dreading today, and he reminded me that not every anniversary had to be remembered. But the truth is that, while I never wanted that phone call, having a diagnosis has been a blessing in so many ways. In fact, the more I thought about it, the more I realized that it wasn't October 17th I was was October 16th.

The 16th. The day before. Because one year ago yesterday I was going about our lives, blissfully unaware of how the rug was about to be ripped from under my feet and the breath taken from me. Still living with the idea that she would catch up and grow out of it eventually. Still able to realistically dream of her typical future- one filled with college, career, marriage, family. Not knowing that in 24 hours or so, those dreams would forever be shattered and I would have to start picking up the pieces and putting together new goals and dreams for my baby girl.

Before Ava was born, I had put I Samuel 1:27 on her nursery wall. "For this child I prayed, and the LORD has granted me the desires of my heart." I have been thinking about how true those words really are. Because I prayed so hard for a baby girl. A girl with blonde hair and blue eyes like mommy. An easygoing and happy nature like daddy. A girl we would name Ava Faye- Ava because it means "to fly" and Faye after myself, my mom, and many great aunts. A girl that would touch and bless others and be a light in our lives. And that is exactly what we got! But what I didn't pray for, what I didn't desire in my heart, was to have to watch my child struggle. To watch my child be profoundly disabled and have to work ten times as hard to accomplish things that just come naturally for her peers. I didn't pray for that. I didn't want that. So does that mean that God made a mistake or that He didn't really answer my prayers?

No. Not at all. I believe the total opposite, actually. God knew our hearts. He knew how much we would love and cherish any child we were blessed with, and He didn't choose Ava for us- He chose us for her! I had no idea what the true desire of my heart was until he gave me Ava. And my desire is to love her and be her mother!

I wrote about getting the call that day, and my memories from that afternoon, in this post. I have talked before about some of the blessings that a diagnosis have brought, but not any specifically. It seems like, with every challenge we have faced since October 17th, 2011, we have also been equally as blessed. Like God is reminding us that, although we will face obstacles on this journey, He is still with us and will lead us through to brighter days.

So I wanted to, instead of focus on the heartache and pain that this day brought us last year, to focus on a few of the blessings that have been given to our family in the year since....

* This past year, both Cole and I have grown so much. Our marriage, our faith. In so many ways. We are both closer to the Lord and closer to each other. We had a strong marriage before, but having to face the diagnosis of AS has really brought us closer together and made us lean on each other for strength and courage. Cole has always been an amazing father, but watching him since Ava was diagnosed- he has really stepped up and become her protector and is just astounding with her. He is really my rock on days that I think I can't keep going, and knowing that he has my back is more comfort to me than he understands. An example of this- we had a GI appointment for Ava yesterday. Just a regular check-up, but I was really worried that I would have to fight her GI doctor to keep her on Nexium for reflux, and I told Cole as much. Now, normally at these appointments, I do the talking. But Cole was the first to speak up when the issue was brought up, and say that she needed to stay on the medicine, and explained why. I think the doctor didn't know how to take both of us insisting on it, so he agreed and there wasn't any resistance from him! I am so blessed with a husband who will do anything to protect his family, and who is my partner on this journey. He is an incredible man, and the AS has really brought us closer together than ever before.

* Cole's job and that journey. Since we were married, Cole has worked away from home. Either deployed or working in the gulf as an off shore pilot. He wanted to be closer to home, but helicopter jobs in Arkansas are few and far between, and usually go to someone with more experience than he had in the beginning. So we decided to buckle down, endure the schedule, and when jobs did come open (mostly at the guard) he would apply for them. For about three years, he kept getting passed over for positions in Arkansas, for one reason or another. It was frustrating and discouraging for us both- but we just kept praying that the right position would come his way when the time was right. In the meantime, he continued to further his career in the gulf, and eventually began flying S-92s. In the process of his S-92 position, he also obtained his Airline Transport Pilot license, or ATP. The ATP is a step up, or add-on, to a commercial license, and is something that he never would have gotten had he worked for the Army, since the Army doesn't require ATPs. Well, he was continuing to build his hours and experience in the gulf one year ago when we got the phone call about Ava. Not 30 minutes after hanging up from telling him what the doctor said, he was calling me back telling me that he was going to start putting in for Arkansas jobs again- something we had both agreed he wouldn't do for a while until he had more hours and had fulfilled his obligation to his current employer.

So as soon as he got home, he started preparing his application for a job as a maintenance test pilot for his unit. At the same time, he got a call from a friend telling him that Arkansas Children's Hospital (aka, our dream job) had an opening. Now we got the AS call on a Monday. Cole came home from work late that Thursday night. Early the next week he put in his application at ACH. He was called late that week and an interview set up for the following Tuesday. We spent that weekend praying, me drilling him on the history of ACH and Angel One (I even made him a little Angel One study guide! HA!) and preparing him for interviewing at ACH. That Tuesday, I sent him off to interview, and prayed the entire time he was gone. He came home feeling good about the day, and excited that he got to fly one of their 76s with the chief pilot. He already had a lot of experience in 76s, and felt really good about his performance. Early the next morning, he left to head back down to Louisiana for work. I got a call about 11 from him- he was on the road, but he was calling to tell me that he had just hung up with the Flight Director from ACH, who had offered him the position!!! I literally screamed. Ava thought I had lost my mind!!! Not three full weeks after getting a heartbreaking phone call, I was getting an AMAZING phone call! But he told me not to get too excited. He reminded me that he was still contractually obligated to his current company, PHI, and that they might not let him out of his contract, or they might require him to repay the money they spent on him to send him to the S92 transition and ATP course.

That night, I sat down on the phone with him, and wrote out his resignation letter, and the next day he talked quietly to some of the management about our situation and the offer on the table. In the letter, I simply explained Ava's diagnosis, and  if it wasn't for that, he would not be seeking employment closer to home. But that the strains and demands of a special needs child are such that being closer to home must be a priority. I think he was surprised when his bosses at PHI were completely supportive and understanding, and didn't give him any problems at all. They had spent a lot of money on his training, and I think he was expecting at least some resistance. I wasn't. I knew that they would be great about it. Because I knew that it was God opening these doors for Cole to be able to be home more often. And I knew that God wouldn't provide him with this amazing opportunity without providing a way for him to take it.

* In dealing with Ava's diagnosis, I have had to face the fact that there were some people in our lives that didn't belong there. Some friends. Some family. People that would tear me down and put my child down at every opportunity. They would constantly berate me, try to compare Ava and our family with their own child and family, were more worried about things like being my facebook friend than they were about the fact that I was dealing with what is likely the most difficult thing I would ever face in my life. And while my decision to cut these people from my life has caused some discomfort and conflict, it has been worth it to not have to deal with the anger and heartache that their presence in my life caused.

There are so many small blessings- new friends, amazing doctors, closer family- that AS has brought to our lives. But I guess my point is that, it is a blessing. As difficult as that is to understand, and as difficult as it is to accept, this is the path that God has chosen for our family and knowing that, I must always remind myself that the Lord granted me the desire of my heart. And He will teach me just how remarkable and amazing that desire is!!! The greatest things in life do not come easily, nor do they come without a price. The price for being Ava's mother is a lot of heartache, sleepless nights, and worry. But the gift is the most precious piece of Heaven- a true and pure and wonderful person made in His image- someone that will constantly remind me of how remarkable the Lord is. And that is priceless!


Soledad said...

Reading your post got me thinking about our diagnosis day as well. It was more for me. Going on 3 years this January. I have to tell you though this year, I completely forgot about "that day." Didn't think about it until a couple days later and I have God to thank for that. Like you I felt Lily would just grow out of it and one day catch up. I was even mad at God when we got the diagnosis because I literally had every religions praying for her. My family is very diverse LOL. However in time, I realized God did bring me the angel I prayed for. God bless you and your family. Angel hugs!