April 9, 2017 The Anniversary of D-Day

EEG

One year ago today, we took our little girl to Riley and got literally the worst news we had ever heard – she has lissencephaly and she likely would never be independent. This is a date that is etched into my memory. It has been a very long and difficult year for all of us. When I am asked what this last year has been like, I compare our lives to a snow globe. Everything was peaceful and calm until Annalise had her first seizure and our lives got turned upside down and shaken up. Things start to fall back into place, and then any little thing, a more aggressive seizure, a fever, a new medication, will shake things up again and you never know when that is going to happen. 

This little girl has had a long year. She has had 5 emergency room visits, 2 hospital admittances, 2 second opinions, 1 CT scan, 1 MRI, 6 EEG’s, approximately 37 visits with her specialists, 10 different medications, 4 swallow studies, 3 types of feeding tubes, 1 surgery, 1 helmet, 2 pairs of glasses, 1 wheel chair, 1 sleep study, 6 nurses, approximately 70 hours of therapy, and hundreds of seizures. While she has had many challenges, she has also had many successes. We have had her seizures under control now for about four months. That is a huge victory. She can hold her head up for a minute at a time. Her vision has improved and she is can make eye contact and track objects. She has much better head control when in a supported seated position. We are working on independent sitting and weight bearing on her legs. She has two teeth and is going a great job eating purees and is up to about a tablespoon at a time. It may not sound like much, but for this tiny warrior, these are all great victories that we have celebrated!

Baby #3

In addition to the diagnosis, our family has also experienced a lot of changes this year. We sold what we thought was our dream house. The layout was not going to work for a child with mobility issues. We found a house that meets all of our needs and is close to our family. It's becoming our home more and more every day. I miss our old house, but we could not make it work for Annalise's needs. I started a new job in January. Once Annalise was diagnosed, I stopped enjoying being a divorce lawyer. I needed to find something that had a bigger purpose. I now advocate for the welfare of children in my new position and find it much more fulfilling. We also will be welcoming a new member to the family in September. We are very excited about the new little one that will be joining us, but, as you can imagine, this pregnancy has been scary and stressful. I will have multiple ultrasounds starting at 20 weeks to monitor brain development. If anything looks unusual, I will have a fetal MRI. We were told that Annalise's lissencephaly was "a fluke." The chances of it happening again are so slim. However, it happened once so it could happen again. I try not to think about baby #3 also having special needs. The thought of it is debilitating. 

Helmet Heads

I would love to say that Sean and I are great; that ours is a story of triumph and we have come through this nightmare. That would be a lie. We are better. We accept her condition and her limitations. We understand that we cannot change her future or guarantee that she will be with us another day. I have accepted all of these things. We provide her with everything we possibly can to get her to reach her potential. We love her unconditionally and show her every single day. We surround her with family that adores her and expose her to experiences that neurotypical children her age would be exposed to. We advocate for her and share her story as much as possible. However, we will forever be broken, changed. We have put the pieces back into place as much as we possibly can. But how do you fully heal when you know that your child, the little person that you created and love more than life, will never walk, will never talk and tell you what she needs or simply that she loves you? How do you heal when you see this beautiful child struggle to do the simplest of tasks, like lift her head or hold on to a toy? How do you relieve yourself of the guilt when you know that after a life full of struggle, she will leave us much too young?

Annalise is thriving. She is growing stronger every day and she is healthy. Best of all, she is still here with us and she is fighting. However, each day is hard. Each and every day, I have to watch my little girl struggle to hold up her head while other children her age are beginning to walk and talk. Each day, we hold our breath and hope that this is not the day that the “big bad” arrives. (The “big bad” is the term that we use to describe the next seizure type she will grow into, which can include grand mal and tonic clonic seizures. These seizures will likely slow her development.) When that occurs, we again have to start experimenting with different medications until we find something that controls the “big bad.” During this process, she will likely sleep a lot and could lose some of the skills she has learned. It is a scary thing to constantly worry about, but we know it is coming so it is hard to ignore. We try our best to take one day at a time and celebrate her successes, but it is difficult to ignore her future.

We have good days where things are fine and this diagnosis is not something that we will let define us as a family. We have bad days where we are overcome with grief. It is very difficult being around children who are neurotypical and their families and impossible to avoid. It is next to impossible not to compare Annalise to children her age or not to be envious of the relationships that people have with their older children. It is very difficult not to imagine what her first word might have been or how clumsy her chubby legs would have been when she took her first step. It is incredibly hard to hear other parents discuss the problems they have with their neurotypical children, like their child not sleeping through the night or their child being a picky eater, and not wish that our problems were so minor.  So I tend to surround myself with other parents who have special needs kiddos because they get it. It feels good to talk about specialists, g-tubes, blended diets, developmental delays, special equipment, etc. and have someone who can relate and does not think of it as a foreign concept or feel sorry for us.

Physical Therapy

Occupational Therapy

Though we are struggling and hurting, we are also thankful. We are thankful that both of these amazing children are ours to love and take care of. We are thankful for every day that the “big bad” holds off. We are thankful for every day that Annalise is healthy and for every day that we have with her. We are so thankful for our family for their support and help in dealing with this all. I do not know how we could have gotten through this year (especially the first few months) without our family. I am thankful for the many new friends I have made that I never would have crossed paths with otherwise. I have learned so much from them and their support and knowledge is invaluable to us. I am thankful for Elliot, who does not seem to care about her limitations, but instead treats her like a little princess. I am thankful for Sean, who has been so strong when I am not able.

We are so proud of both of our children. Annalise is such a fighter. She has been put through so much this year and gets through it without a complaint. Elliot is so funny, smart, and energetic and an incredible brother to her. We are excited to meet baby #3 and have such high hopes for him. In some ways, we are better people because of her diagnosis. We are more accepting of people who are different in any way. We are better parents because we had to adapt to be what Elliot and Annalise need us to be. I am lucky to have these two (soon to be three) amazing children. I will continue to be my best for them, even when that means adapting and fighting harder when our snow globe gets shaken up again, because they deserve nothing less. They have already suffered enough and I will make sure I protect them as much as I can from the challenges that lie ahead. On D-Day, instead of being sad and wallowing while remembering how our lives were turned upside down a year ago, we are going to celebrate. We will celebrate our determination to put one foot in front of the other every single day and not give up. We will celebrate Elliot, for being such a wonderful child and bringing positive energy into our home. On days that I did not want to get out of bed, he was my motivation. Finally, we will celebrate Annalise's life and health. We have no idea how long we will have her with us and I refuse to spend this day mourning the life she should have had, but instead celebrate how far she has come.