Logan, my love, it's been quite a year. It's the middle of November now, we've celebrated your birthday and your brother's birthday and things have settled down and I've had some time to think. I left my job last month to stay home with you and Devin full time. Our days are good, happy, fun and I'm able to watch you closely like the doctors said I should. Lately you've had some stuff going on that worried all of us and your doctor, so you has two ultrasounds at the beginning of the month. The results were perfect! You're still kicking BAutt! We lost a BA fighter today and I can't put into words how that feels. I can't imagine the horrible pain and emptiness her family must be feeling because I can't imagine losing you. On the day you were diagnosed I did a quick Google search on biliary atresia and saw that babies died because of it. That scared me but it was just a scary idea, it wasn't real to me. It wasn't until after your Kasai that I got involved with different groups online, we've watched babies just like you struggle with BA, some have had a much harder journey than you, some an easier one, some have become angels too soon. Everyday, I'm reminded that these days aren't promised to us, they are a gift and we need to remember that. Lately, I've been thinking about those first 7 weeks, looking at pictures of you, watching videos of you and remembering how it felt before I thought something might be wrong on Christmas Eve. And then on Christmas Day when I knew something was wrong. I remember walking into that operating room, really nervous about the c-section but knowing that I'd get to see you finally! You looked a little confused and scared the first time I saw you, a perfect little baby. I had no idea something inside wasn't so perfect. When I look back those weeks seemed to be so innocent. There wasn't this worry that we have now, the constant waiting for biliary atresia to make an appearance in our everyday lives. Those first few weeks, I just loved you, held you, took care of you and worried like a regular mom. Not like a liver mom. And please don't think I'm complaining because I'm definitely not. But this year has been so scary, there were times I thought we might lose you, times something happened and I packed our bags, knowing it would mean another week in the hospital. You spent too much time in the hospital this year. We made the best of it, believe me , the hours turned into days, the days to weeks, the weeks added up to months. But we still tried to keep it upbeat and happy for you, Because you are always happy. You are a very stubborn and determined boy. Despite everything you have been through this year you still learned to crawl. It took you a long time to get it, you would get so mad you would lay your face on the floor and cry because you couldn't push yourself up. Walking was easier, you took your first steps at 11 months, while I was on the phone with your dad and I screamed!!! You are walking around everywhere now!!! You'll be running soon. I still hold you through every nap time because I'm really not ready to let you go and you seem to still like sleeping on me. You have amazed your doctors, our family, especially us. So when I think back to those simple days, before we knew you had BA, I'm really just longing for a time when you didn't have to fight so hard. I know you were fighting then and we just didn't know so I guess that doesn't make sense. I'm still struggling to accept that a fighter is who you are, every mother wants to keep their kids safe and protect them and I try hard but there is only so much I can protect you from. We take as many precautions as we can to keep you healthy while still letting you be the normal, active toddler that you are today. You've had a lot of changes this past year for sure. In September you were back in the hospital for an infection and we found out that the antibiotics had caused a problem with your white blood cells.They took you off the antibiotics then and we had to have extra blood work, see a hematologist, and were warned to be really careful of germs. So at the one year mark you are down to just two medications everyday, it should be three but you won't take the mulit vitamin anymore. This holiday season we will have to be more cautious to keep you healthy. So we will find some fun and creative Christmas things for you to do. I keep trying to buy you "baby's first christmas" stuff because you didn't get a Christmas last year. Or New Year's... Although on New Year's Eve you pulled your IV out and showered both of us in blood, which was pretty exciting. I want you to have an easy life but I guess that really doesn't happen for anyone, does it? We love you so much! You are such a good baby. Our little fighter. It has been a wonderful gift to be your mother and be with you on this journey. And so I will always look back and have some longing for those simple, innocent days but I'm looking forward to your future. Be strong my love!!
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AuthorSasha Marie Austin. Mother to Devin Ashton and Logan Reed Archives
November 2015
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