I can't believe that I am typing this, but next week I will turn the big 3-0!!! I am not sure where the time went, really. Although I will say that I feel like I have been in my twenties forever! HAHA! Cole says we can just call it 29 again. And I am okay with that!
I have been thinking a lot about my 30 years, especially the last year. It was, by far, the worst year of my life. But it was also the year that brought the biggest blessings, and brought me closer to the Lord in ways I didn't know were possible. I have yelled at God, asked "why" more times than I could count, praised Him more than ever... Definitely a roller coaster of a year! The last 12 months have brought the most difficult challenges I have ever faced, but each challenge has been followed by a huge blessing. And it is amazing to see God working in our family.
I think back a lot to the day that we got Ava's diagnosis. I have never blogged about that day, and I have wanted to, because, as dark as that day was, it was the dawning of a new day- a beginning of a life long journey, and I do want to remember it. You would think that day would be a blur. And in some ways, it is. Prior to that phone call at lunch, I really don't have a clue what we were doing. It was October 17th. My Nana's birthday. We had planned to go out that night for a big family dinner. I was feeding Ava lunch and the phone rang. The earth stopped. My world shattered. I don't really remember what all Dr. Burns said to me. I remember the words "seizure", "nonverbal", and "incapable of living independently." The world just kind of went dark in that moment. Ava sat there eating her lunch, happy as ever, and I just hung up the phone, collapsed on the kitchen floor and wept for about 30 minutes straight. I just couldn't move. When I finally felt like I could stand, I got Ava down for nap as quickly as I could, then I called Cole, who was in Louisiana at work. I thought I could keep it together, but I couldn't. I was crying so hard telling him that he thought she had some horrid disease that was going to shorten her life. When I finally got done telling him, I told him to call his parents, we hung up the phone, and I called my mom at work. She was in the middle of something and couldn't talk. She could tell from my voice something was really wrong, and promised to call me back as soon as she could. So I hung up with her and called my sister. She had had some medical tests done that day, and was sleeping off the anesthesia. I told my brother in law to have her call me as soon as she could. Then my mom called me back, and I told her. We both cried. She got off the phone with me and left work to get my dad and come to our house. Then I called my brother in law back and told him that it was very important and I needed Amber to wake up and talk to me. She got on the phone (still groggy) and I told her what was going on, and we cried. Then she said she was coming down.
After that, Cole called me back and told me that he was going to start looking again for a job close to home. I was against this at first, telling him that he was having a knee jerk reaction and we needed to just process this before we did anything. But he said something that was like a kick in the gut to me, and made me realize he was right. He said "Rachel, if our baby girl only says one word, and I miss it because I am in Louisiana at work when I could have been home at work, I would never forgive myself." I don't know what he did between the two phone calls. Cole doesn't show emotion much, and we don't really talk about emotional things (not on his part, anyway!). But I could tell that he was shaken to the core, and that broke my heart even more.
Not long after that call, my family arrived and we just sat around in silence together, stunned and shaken. My poor daddy cried more than anyone I think, which of course made me loose it even more. We just sat and sat, deciding what to do, where to go from there. And I guess this is where we have gone! The funny thing is that, through all that, Ava just took a nap. Her world hadn't changed. She was still Ava, she was still happy, and she was still loved.
I knew from reading about having a Special Needs Child (something I couldn't say for about three months) that I would be going through a mourning process. And I decided that I was ready to get to the acceptance phase as soon as possible. So I did everything I could to minimize the anger, denial, bargaining... One thing that I have not let myself do is think about what Ava's life would be like if she were typical. What Ava herself would be like if she were typical. Which is hard when we see other two year olds running everywhere. Simple outings to the park can bring up a lot of emotion in me, and I have to consciously not think about those things. Because the fact is that God wanted Ava to be special. He has a plan for her life and loves her just as He loves every other child- special or typical- and until I accept what her life IS, as opposed to what I had planned for it, I won't be able to embrace the Lord's plan and do all I can as her mother to give her the life He wants for her! That acceptance is a process. One that doesn't happen overnight or without great difficulty.
I am painting a canvas for her big girl room, and I was searching for a verse to put on it. I prayed about it, and then googled "special needs bible verse." Many websites and suggestions came up, but none felt right. Then I was reading an amazing article about a church in North Carolina with a large special needs ministry, and the pastor quoted Jeremiah 29:11. " 'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.' " And I knew that was it. Because the Lord does have a plan for Ava's future, and it is full of hope! And as her mother, it is my job to help her reach that future.
Ava is a miraculous child. She has taught us so much about life and love and perseverance. She is a symbol of strength and love, and I am so thankful to be her mommy. Of all of the things I have done in my (almost) 30 years, she is my greatest accomplishment, and I am so, so blessed.
You can read about our journey to a diagnosis
here. I wrote it the day after we got the call.
