and a lot of years wiser. I cannot believe it has been two years. People constantly tell you that the time flies even when it feels like it is standing still. I remember driving home during Alyssa’s NICU days thinking and saying – “One day this will all be a fleeting memory, our bad days will be just something we remember.” I don’t think I truly believed it then. Those 18 days are still the longest of my life but somehow each week they seem a bit farther back in my mind. That is, until I stop to think. It is bizarre what the mind chooses to remember and what detail it gives to certain situations. I can still picture our little family in the NICU as if from a birds-eye view. It is almost like a TV show to me that I have watched the reruns of one too many times for my own good. I can remember the sensations, the constant knot in my stomach, the nurses looking at us as if we were idiots for laughing over a child who they had so little faith in, and most of all… I remember looking at that sweet little girl and dreaming of the day she would come home.
One memory that stands out amongst those first few days is when my mom and I were in the NICU at the original hospital prior to transporting her to level 3. We were holding hands and chatting about Alyssa. I was terrified, confused, and still in so much shock. Our seemingly ‘healthy’ baby was now sick enough to be sent to a hospital while I was still admitted to one on the other side of town. My mom was confident, every minute of Alyssa’s life, that she would make it through. In that instant, I was not so sure. I remember my mom squeezing me and saying something to the effect of “I know she will be OK. I just know it. As I was driving down here today I saw the most beautiful vision of her being pushed on a swing. Her hair was long and brown and just flowing in the sunlight. She will be fine.” I cried. I am now, again. It was what I needed and somehow my mom manages to still find the words I need when no one else seems to have them.
That was the first day of Alyssa’s challenges and the first day she set out to prove every doctor or nurse she met wrong. I am still so grateful for the day and a half we had with her prior to getting someone to listen to us about her seizures. If I had not seen her for that day and a half, I would have not known how strong she was. Even at her weakest moments, she always managed to show more strength than anyone could have asked of her. The first few weeks of her life were a roller coaster. There is absolutely no doubt about that. There was bad staff, there was awesome staff, and there were people who I scarcely remember. Each day ran into the next and Neil and I clung to every bit of hope we could muster. Our faith in humanity was restored. We for once in our lives got to take a step back and see only the good in people. We had people we had never met praying for us, sending us momentos to help us keep courage, and truly holding us up so that all we had to do was be there for Alyssa. We were. Every. Single. Day.
As she got stronger we used to sit and read, tell her of the local news, and laugh about things that were happening on the “outside.” Some of my favorite NICU moments were when we would sit and read. The OT had given us a book called “Run Little Monkey” which we brought and read each day. Neil would say a line in English and I would repeat it in Spanish. We would laugh about the fact the monkey never did learn any better. LOL. Ah well. Reading and recounting silly stories were what got us to laugh instead of crying. The only time we ever shed tears over her bed was when we were praying. Other than that, we went in there to have a good time for those limited hours we got to see her. As silly as it must have seemed to everyone else, it was our coping mechanism. It was how we dealt. I’m grateful for it now, looking back, that I have “good” memories of “bad” times.
Like I said, it is all semi-hazy now. It blurs together even though parts of it are so distinct. That is perhaps the easiest way to sum up watching your child grow. It is amazing to me that two years have passed. The second was definitely a bit easier on the heart than the first. However, each year presents its own set of challenges. The most notable difference between the first and second year. Alyssa made it through year one with minimal medical intervention. *Knocking on wood as I type* We joked for the first year that we had quarterly hospital visits. This year, was much easier to handle in that respect. We still see quite a few doctors, we added early intervention for last year, and she is still seizing daily. However, it is just part of the routine now. There are good days, there are bad days, and then there are just “normal” days.
Over the last year she has conquered so many hurdles that I could not even list them all if I tried. Right now, she is working on mastering eating off a spoon…by herself. It is so cute to watch her put the spoon in her mouth to simply receive praise. She knows we are going to grin like fools and proclaim “good girl” just to see her grin like a fool right back. Each and every week it seems that she is doing something “new” or something just a bit “better.” She does everything in her own time and as she does, she teaches me patience each step of the way (although sometimes… I run out LOL). This last few days she has been making noises I have never heard her make before and the look on her face when she hears them for the first time is something that makes me melt. It is a phenomenal feeling to get to watch someone discover things about themselves for the first time. I’m so grateful we get to walk through this with her. Even if some days I barely have the strength to walk, I know that we will get through it and the next will be easier. We will always have the security and strength of each other in this family.
As Alyssa begins her voyage as a two year old, she does it with so much determination that even I struggle to keep up. As much as she is “behind” she is so far ahead in my book. She is exactly who she needs to be, even if sometimes the rest of us struggle to see that. This last few months she has soared by leaps and bounds. It is truly astonishing to watch her take in the world around her. I wrote in a journal when she was in the NICU that I thought she wold have an infectious giggle when it came. I could not have been more right. Her laugh almost brings tears to my eyes on occasion. She has so much on her plate, so much that she conquers daily to be who she is, and somehow…she glides through it with grace. Alyssa is a light. Period. She shines so bright and I struggle daily to do my best to make sure she gets a chance to shine. She is so blessed with people in her life who see HER and not IP. We are so grateful for that. So grateful that as she is growing and changing we get to see her as a child not a disorder. It is hard at times. We all want to stay on top of things, to know what is going on, where she is at ‘on the charts’…etc. However, at the end of the day, we all know none of it matters. We all know if we had listened to the charts, doctors, and medical reports, that Alyssa would not be who she is today.
Entering this third year with Alyssa, I am hopeful that it will be our best yet. I am grateful that we have been given this time with her. That all of us as a family grow a bit each year. This year, I want to focus on letting her be exactly who she needs to be and giving her every outlet that we possibly can. I know it is not going to be easy. I know that there will be challenges. However, I also know that as a family, we can take them on. I know that when I stumble for a day, Neil will be there to catch me. When Neil stumbles I will catch him, and most importantly we will both be there to carry Alyssa through to her 3rd Birthday. I cannot wait to see what she teaches us this year. It will forever astound me that someone who has yet to speak a word has taught so many people so many things that they could not have learned by reading a library of books. This year, I will try my best to be exactly who she needs me to be, because I am so grateful that she is always who she is… no matter what. Congratulations on everything you have done Alyssa. I want you to know. Mommy and Daddy are VERY proud of you!