Reflection - Two Years Later...

Exactly two years ago today, when Taylor was just 5 months old, she had her first seizure. And that night, at Children's Hospital, she was diagnosed with Infantile Spasms, a very rare and very severe form of epilepsy, associated with existing neurological and developmental problems. We were told she would never be normal.

I remember that moment, hearing those words, like it was yesterday. I don't think I'll ever forget it. It felt like our world had been shattered in an instant. I'll always be grateful for Dr. Prieur, the Neurologist on service that night and for the next few days. She sat with us, explained as much as we could take in, and did it all with such compassion. She was gentle, kind and so very caring. I can't imagine having to hear such devastating, heart-breaking news from anyone else. She helped us through the next several very emotional days. She sat with us at length, explaining, re-explaining, answering our questions, passing us tissues to dry our tears. So very many tears. Again, as I sit here and write this and re-live that time. I believe it was our defining moment. Our lives were rocked to the core. Forever changed. We didn't know it then, but we would rise to the challenge.

So many people told us that Taylor was a gift, that she was given to us for a reason. At first we struggled with what that reason could be. But we soon learned that it was to touch our lives with the lessons she would teach us all. And she has taught us so very much already. When I look back over the past two years on how we felt then, and where we are today, my goodness we have come so far.

For a very long time after we had Marissa, we thought that we wouldn't have another child. Marissa was such an easy baby, and we were perfectly content with our 'one' and only. As time went on and Marissa was growing furiously, we decided that we wanted another baby. We wanted her to have a sibling, a playmate, a friend. When we learned Taylor's prognosis in those early days, I felt such overwhelming sadness for Marissa. She wouldn't have the playmate we wanted for her, the kind of sister she should have had. I remember feeling that having Taylor for a sister was such a loss for Marissa. It's hard to write that down, but it's real, and it's all part of the journey we've been on. And today, there's no feeling of loss. I look at Marissa and see a girl who loves her little sister so completely, so unconditionally. She may not have a sister that she can play with like she would a typically developing two-and-a-half year old, but she loves her just the same, maybe even more. Taylor is the first person Marissa runs to when she comes home from being out, and attacks her with hugs and kisses. She cheers Taylor on when she does something new. She encourages and praises Taylor when we're doing her therapy. She climbs into Taylor's crib every morning to have special cuddle time with her. She always wants to help Taylor do whatever it is we're working on with her. No, Taylor has not been a loss in the sister department, she has been a very special gift that Marissa treasures dearly.

My pregnancy with Taylor was normal. I had some high blood pressure the last month, but apart from that everything was good. No sign of trouble down the road. All our ultrasounds, tests, screens, were normal. As far as we knew we were going to have a perfectly healthy second daughter. Along the way, Francis and I did have the talk about what if early enough in a pregnancy we were to find out that our baby would have severe special needs. It pains me to say this out loud, but we would have made a decision to not go through with it. It's hard enough raising perfectly healthy children. When I look back now, I think it was the biggest blessing that we never knew Taylor's fate during the pregnancy. Because we may have made a decision that brings tears to my eyes to think of now. I cannot imagine our life without her. She is a blessing. She has truly taught me the meaning of unconditional love. I never knew I could love so deep, so hard. It's so difficult to admit what we thought we'd do. Makes my heart ache. But it was fate that gave us a normal pregnancy, and in the end our precious gift.

I remember in the beginning, when we learned that our Taylor would be different from other children, what kept going through my mind was how I didn't want my daughter to be the one that other people stare at. Let's face it, people stare. I know. I've done it. I'm guilty. But what I didn't know, and what I didn't expect, is that I think when people are staring at Taylor (in her wheelchair, with a feeding tube in her nose) and then happen to catch my eye in the process, it's like they look over with love. With emotion. With feeling. Like they feel for what we are going through, for what Taylor is going through. In no way have I ever felt anything negative from the stares, or judgement. But rather love, acceptance, understanding, empathy. It's comforting. I'm grateful that I don't ever feel the way I thought I'd feel when people look at Taylor.

Taylor smiled for the first time when she was 11 months old. That was an awfully long time to wait. I so desperately wanted and waited for that smile. That beautiful reward for all the trying times. And that flash of a smile came the day after my birthday. Oh, how incredibly beautiful it was. A week later Taylor was lying on the floor in Marissa's room and Marissa was blowing raspberries on her belly. And she smiled. A big, obvious, responsive smile. I sprinted for the camera and told Marissa to do it again. Another responsive smile. Over and over and over. And despite the annoying delay on the digital camera, I managed to capture one of them. And it was her big sister making her smile. Heart warming. That picture sits here in a frame on my desk, and makes me smile every time I look over at it. She hasn't had a responsive smile quite like it since. She keeps subtle, tender little smiles locked away in a box, wrapped up tight. When she lets that box open up for just a moment, it's the most amazing gift. And boy do we celebrate it.

One of the many hurdles Taylor faced was vision. She has cortical visual impairment (CVI). Basically, her eyes are normal, the nerve is normal, and the signal is getting to the part of the brain responsible for vision, but the brain isn't able to interpret what she sees. At the time her seizures started, whatever vision she had was very scattered. She was all over the place. Eyes constantly moving, but they wouldn't fixate on anything, let alone follow an object. She never made eye contact. But now, my goodness, she has made more progress with her vision than with anything else. She fixes on things and follows beautifully. And eye contact, oh the way she looks into your eyes is almost magical. It's so intense that you feel like you're the only person in the world. That is her greatest gift. And they're the most beautiful eyes you've ever seen.

She may not sit or crawl or walk, but Taylor certainly has mobility and it is entertaining to watch how she gets around! She's a rolling machine. She started rolling over at 7 months, and I think at this point I'd say she has that move pretty much perfected. She can roll clear across the room in no time. She so tries to crawl, brings her knees right up underneath herself but can't support her upper body to be able to move herself forward. So, instead, she has created her own signature crawl. I call it the Taylor head twisting back crawl. She lies on her back, arches her neck back, rolls onto her side, then tosses herself back using her leg and a twist of her head. She repeats this over and over and over until she's gone around in a full circle on her back. It is quite amusing. She's running circles in her own unique way.

And she's a real little kicker. She may not show lots of smiles but we know she's happy when she's kicking. She surely has abs of steel underneath that round baby belly, cause she lies on her back kicking both of her legs like her life depends on it! And the funniest is when she lies on her side and kicks, like she's working her obliques. Very amusing to watch. Taylor's signature workout moves.

Her other method of mobility is her wheelchair. I so struggled with giving up the stroller for a wheelchair and the attention that it would draw, but she was just so slumped over and unsupported that it became the necessary evil. But the funny thing is, when it finally arrived, there was nothing evil about it. Part of that was probably because of Al, our wheelchair guy from Maximum Mobility, who made the whole wheelchair fitting experience wonderful. But the other part was actually seeing my little girl sitting upright in a fully supported seat. It's like she had a whole new view of the world and for the first time she actually looked really comfortable. And I must say a pint-sized wheelchair is kinda cute. Moves easier than any stroller out there. I can steer it with my pinky, that's no lie. And in no time, Taylor's ride was pimped out with love by her Granny. Swarovski crystals all around her butterfly strap, and BMW logos on the wheels. When Taylor's out, she is stylin!

Speech is still a major roadblock for Taylor. Our neurologist thinks that may be an area where she remains profoundly impaired. We do everything we can to encourage her vocalizations...talk to her, imitate her sounds. I hope that we will prove him wrong, and I think he'd be happy if we did!

The other major roadblock right now is feeding. We've had that ongoing battle since October when the NG tube went in because she stopped eating and drinking all together, for reasons still unknown. The weekly NG  tube changes have been awful to say the least. It has changed my little girl, she's traumatized every time. She has become so ultra sensitive around her face. Stroking it, kissing her cheek, wiping her nose, washing her face, brushing her teeth. Anything to do with her face and you see fear in her eyes and a cry that breaks your heart. When we finally made the decision to go for g-tube surgery we were at peace with it, and it couldn't happen fast enough. After referrals, a GI consult, a pH probe, and finally surgery clinic...tomorrow is the big day. Surgery in the morning. And I will savour the moment when I can pull that damn NG tube out of her nose for good. She'll be fed mainly through the g-tube, but we can still continue to work on oral feeds. She has made some baby steps there, taking a bit of bottle, and some tastes of solids, so it is my hope that without the irritation of the NG running down her esophagus, she will start making even more progress with oral feeds.

There are lots of hurdles and roadblocks for our sweet Taylor, and there always will be, but I refuse to let them consume me. I will not let them bring me down. Taylor needs me and I need to be strong for her. Advocate for her. Help her. Cheer for her. Love her. I think perhaps what I have learned most about myself on this journey is that I am capable. I can do this. I am doing this. A few years ago I would have looked at this like a parent's worst nightmare. But it isn't a nightmare. Don't get me wrong...there are trying times, tough days, tears, and lots of worry. But through it all there is so much love. Love for this beautiful little gift that was given to me, to us. Love that gets me through the rough patches. There are way more good days than bad, and moments that we celebrate each little success. We're taking each little step of this journey one day at a time, and trying to be the best we possibly can be for our angel, our Supergirl.