Whats Hope Got to do with it?

I often think back to the morning I first got Asher's diagnosis. I think about the way I reacted and wonder if I knew then what I know now, if I could have escaped the weeks and months of bouncing frantically between sadness, despair, and denial. I'm not sure. What I keep coming back to is hope. Hope is a very funny thing. When I first heard the diagnosis, it was like all my hope flew away with one small sentence. That everything I wanted for Asher flew out of our lives. A dark cloud on what had once been a sunny day. I felt guilty for a long time that my hope was fleeting. I felt like a failure as a mom that I wanted more for my child that maybe he could achieve. Why couldn't he just be good enough as he was? Tonight I wrote a 30 days of thankfulness post on Facebook about Happiness. If you're on my FB then you can read it there. If not, the gist was that we gave our son the name Asher because it meant "Happy and Blessed" that Happiness is what we most hoped our son would have. I thought about this a lot after his diagnosis. If it was true that I wanted happiness for him, wanted it more than anything else....then why is it my hope had vanished just by hearing the words Autism Spectrum Disorder? I struggled with this a lot. I tossed a lot of theories around in my head, it almost always came back to me blaming myself, that it was really my happiness I was worried about, that my pride was getting in the way, that it was my idea of what my life with Asher should have been that got smashed and I was confusing it with hope. But then one night I was reading a blog that was written by someone I actually don't like very much at all. Its funny how that works out sometimes. But anyway, this person is another special needs parent who is newer to the special need parenting thing than I am. Anyway, she talked a lot about the hope she had for her child, the things she hoped her child would be able to do, but that in the end it really came down to the fact that she hoped someday her little girl would get married. And it hit me, I had to stop reading, I had to cry. That was it. For me Happiness looks like a loving family, something you create with another person, a companion, someone you can laugh and cry with, have babies with, share your dreams with, grow old with. When I heard the word "Autism" I stopped being able to see that type of companionship for Asher. After all, not very many little girls wish they'll grow up and fall in love with an Autistic man, a man who will have social and emotional deficits, a man who may not be able to bring the emotional depth to a relationship that she needs him to have. And of course I looked in the mirror and I was disgusted. Holly Cole, be honest, you snob, you could not see yourself marrying an Autistic man. And I shook my head, I bowed it, I was ashamed. There was so much at that point that I did not understand about Autism, about Asher, about my husband, about my own self. So many answers that I knew I needed to uncover if I wanted to refind my hope for my son. I look at my little boy, with all the hell he goes through, all his struggles, but he giggles, he smiles, he hugs and loves, and is happy. His childhood is happy. And that has to be okay for now. I don't know if he'll be a happy man, I will do my best to teach him how to hold onto happiness. I don't know if he'll be successful, though I will try to teach him to be satisfied. I don't know if Asher will grow up and get married or have a best friend, but I will try to instill in him a drive to keep going after the things he wants in life. That way if he wants to love and connect to someone, that he'll give it every last bit of effort he has, and maybe some lucky girl, will be better than I am, able to see beauty and worth when it is right in front of her, maybe she'll grab him up. Maybe he'll make her a better person and she'll make him a better person. Maybe. Or maybe he won't need those things at all to be happy. Maybe he won't. And for right now my hope can hold hands with "Maybe" I think I can live with that. After all, hope is a funny thing. It has a way of creeping back into your heart, even when you're pretty sure it has gone away. Poof! There is is sneaking back up on you!

The most "portint" things in life.....

If you've never seen the movie The Help and plan on it, then you shouldn't read this post. You've been fairly warned. Asher was really playing well with his trains the other day, so I decided to indulge in some non child related TV. The Help just happened to be on and I was like "What the heck?" So if you've seen it, you know there are several parts in the movie where Millie, the "Help" leans down and tells the young girl she cares for, "You is special, you is smart, you is important" I thought this was really sweet. The third time it showed her doing this, Asher put his train down and said "Baby portint, right Mama?" Shocked. I know he didn't know what it meant. But he knew it was something good. And honestly, I tell him at least 500 times a day how much I love him, but I've never told him he was important. So I blabbered over myself saying "Asher of course you're important!" Anyway, I got to thinking about how important it is to build children up and how easy it would be to give them self esteem just by being conscious of the way we speak to them. So for the past three days since I saw the movie I've been telling Asher "You are special, you are important, you are smart, and I love you" And he loves hearing it! He has been coming up to me and saying "Mama, tell portint" so I'll repeat "You are special, you are important, you are smart, and I love you" Sure Sure, I stole it from a movie, but I'm not ashamed to admit it. It makes him happy. And someday he'll understand what it all means and maybe he'll remember me saying it over and over again and he'll believe it.

A Tale of Two Babies

I didn't meet my friend Michelle in the conventional way, we didn't go to school together, we weren't introduced by a mutual friend, we didn't play on a sports team together, none of those things. Michelle and I met on a pregnancy forum. There were thousands of girls on this forum, but Michelle, like a few others stood out. Why? Because Michelle and I were two of a small group of first time mothers to be, who were on bedrest with complicated pregnancies, this allowed us to stay up and chat about our fears until the early hours just before dawn. Michelle and I had a lot in common...including pregnancy complications, both were at risk for preterm birth, both had growth restricted babies, problems with blood pressure, on and off bedrest. I'm sure in the course of history people have bonded over odder things. But the similarities didn't end there. Despite having due dates weeks apart, we delivered our babies on the same day, within hours of each other. On April 16th, 2010 Olivia Greener and Asher Cole were born, small, perfect babies, who for the most part seemed healthy despite their beginnings in the womb. Within weeks of being born, it became clear that Asher was a very sick baby boy. By 11 weeks old he was hospitalized for his first major allergic emergency. This hospitalization lead to two very difficult diagnoses. I worried about him all the time, but despite having a sick baby girl of her own, Michelle would stay up late and talk me down. Within a couple months of being born, it became clear that Livy was also a very sick baby. She was tiny for her age, could barely eat anything without being sick, Michelle was forced to strip her own diet down to little more than rice and water to make sure that her baby could safely nurse. So we stayed up nights, chatting about medical food, allergies, projectile vomit, bloody diapers, rashes, breathing issues, babies in pain. Two babies born on the same day, with shockingly similar serious and rare medical problems, one with a diagnosis, one without. As time moved on and the babies traveled toward one years old, physically Asher thrived. Medical food allowed him to become healthy and strong. Meanwhile Livy Love was still a medical mystery. We would share pictures, ones of a giant boy, and ones of a tiny baby girl, who had a full head of hair and was walking. Livy had failure to thrive. As I rejoiced in our health care options and availability of medical food, Michelle and her husband fell into despair. Livy was so small she didn't even make the growth curve. At a year old, she barely fit in 6 month clothing. And still Michelle and I stayed up late at night, worrying about things like "How will we ever make them a birthday cake they can eat for their first birthdays?" One mom wondering if she was watching her baby die, and the other one worried that if she sent her precious boy to daycare, he'd die, it would only take a small mistake. But Asher continued to grow and Livy didn't. She became sicker and sicker. Michelle was worried, I was pretty worried too. How would anyone be able to pick up and move on if Livy didn't make it? I would look at Asher and think "its not right, they've always been the pair" I think of Livy and I think of Asher. Please God, take care of Livy. We what did we do? We shared medical food, calorie adders, recipes. Asher's doctors gave me extra formula and we split the orders, one half stayed in Massachusetts, the other half went almost to the other side of the country. Why? Because I'd had enough. This is what it came down to. One child very healthy despite having a rare and serious medical condition and the other child was dying before our eyes. Why? Because Asher was lucky enough to live in a state that mandated the insurance coverage of medical food for children and Livy was not. Whats the big deal? Couldn't they just buy it? Sure, if they wanted to be homeless, because medical food costs more a month than most people spend on their mortgage and other bills. So Livy did okay for a while, she didn't catch up, but she wasn't losing. It was okay, small steps, and boy that little girl was smart as a whip. Asher had his ups and downs. We would be told if his EE got worse or his weight dropped below a certain percentile he would get a feeding tube....we did not want it. We were readily given services to help Asher, had doctors who investigated further, fought for Asher and took his condition seriously. Michelle was lucky if she could find a doctor that even looked twice at her daughter. She traveled with her little girl, searching for a specialist that would help. And I watched from the other side of the computer and prayed for this little girl, born on the same day as Asher, to a very good friend. One very lucky toddler and one we were watching die. And then poof, one day a specialist listened, Livy was hospitalized immediately and scheduled for the placement of a Gtube, which would allow her to bypass impaired parts of her digestive track and get sorely needed nutrients. All this with no time to spare, because Livy was that sick. Thank you God for listening. Over the next few months, she gained weight, started to look like a toddler, not a talking, walking, smart as hell infant. And there was hope. Meanwhile Asher had his ups and downs and struggled in other ways. So we stayed up late and we chatted about how unfair life could be, how much crap could fall on some people and others lived with "first world problems" that would have been a blessing for either one of us. When things went wrong, we knew where to find each other. I'm still praying for Livy and I know Michelle is praying for Asher. He has his ups and downs, and Livy has hers, although her downs are deeper and scarier, two babies born on the same day, struggling to survive. Very recently Livy has started to fall behind again. She is in pain, unable to sleep well, not growing as well, and has started to have episodes that look like seizures. Looking at the symptoms, specialists have started questioning a disease that very few people know about called Mitocondria Disease. So we pray, because as much as it sucked to get Asher's diagnosis, we knew that if we were careful we could manage it. There are many types of Mito disease, and some of them are terminal. So we continue to pray for Livy, who should have been tested over 18 months ago when she was so sick we weren't sure she'd make it another week or two, like Asher was tested the first time he was hospitalized. We pray for a family who loves their little girl, for a friend, for a beautiful little girl, born on the same day as Asher, sharing the bond of childhood illness, knowing that while I trust that God loves us, I sometimes question the hand he has dealt us. But then I stop and think. Born on the same day, and I know God has brought us together for a reason <3