Today marks the 2 year anniversary of Ellie's accident, As the months have gotten closer to the anniversary of Ellie's accident I have felt disconnected with the rest of the world distracted by my thoughts and feelings, I feel like the biggest flake ever forgetting phone calls, appointments, school activities. I honestly don't know how to describe what I am feeling, really it feels surreal, when I look back and see what was going on in our lives a 2 years ago, I think that it's easy to say "Na that didn't really happen" but then the gut wrenching sick feeling in the pit of my stomach tells me different.I look at Ellie and all that she is going through and know that it happened and our family is forever changed because of it. The fear that something bad could happen at any given moment is so strong, I keep thinking that what happened is behind us now, yes it happened but it's over, but the fear of something equally as bad happening is there and growing stronger by the day, some days I just want to lock the door and never leave, I'm under the illusion that this will keep my family safe. I had hoped over the years things would get easier.
When Ellie was in the hospital we next to never left her side, one of us was always by her side, holding her hand, talking/singing to her, reading some of her favorite stories. One of the nurse's Ida was her name (she quickly became one of my favorites), saw me one day holding Ellie's hand and crying, and begging her to please stay with us, to fight and stay strong, I didn't even know that Ida was behind me until she put a hand on my shoulder, and with tears in her eyes told me "give it to God, he will carry it for you." she gave me a tight hug and then left. I needed to hear those words and after that I really tried to, when I felt stressed, overwhelmed and helpless I took her advice and gave it to god, I also took Dana's advise and put Ellie's life in God's hands "thine will be done" was uttered at the end of every pray.
Once the bleeding had finally stopped and Ellie was on the road to recovery, Ida gave me some more advice, she told me there wasn't much I could do while she was still in her coma, so she encouraged me to spend more time at home with the other kids, and resting because "the hard part comes when she wakes up, you will need all your energy and strength.". I knew she was right, things were going to get hard emotionally, spiritually and physically, I was already struggling to keep up the nursing Maeley and being there for the other kids, I took her advice once more. When the day finally came that Ellie woke up and a whole new chapter in our lives began I realized how true Ida's words were, it was so hard to see Ellie hurting, and struggling, my heart was breaking even more, I was so glad my little girl was alive and awake, but I was sad because her life, our life wasn't going to be the same. Things definitely got tougher, Ellie was really stubborn and it took a lot of our energy to get her to listen to the Dr.'s and nurses. One thing that Ellie became famous for was sticking her tongue out at her nurses(and the neurologist), and instead of it having the affect she wanted it to, everyone laughed and thought it was the cutest thing! Ida would just stick her tongue right back out at Ellie! Ellie and Ida seemed to have a really great friendship, the day that Ellie was released we passed Ida in the hall and she greeted us happily and was excited that she would be Ellie's nurse for the afternoon shift, I wanted to cry when we told her that Ellie was going home, but she was so happy for us and for Ellie, she was sad that Ellie was leaving because everyone had gotten use to having her around, but she was so happy that she was well enough to come home! Ida gave me a hug and said "you got this mom, everything will be ok, remember give it to God!".
I knew that things were going to be very difficult, but I figured with time things would get better and the stress wouldn't be so bad. When Ellie was first home I jumped right in and just did what needed to be done, I could handle the physical part of it just fine, but it was the emotional part that was killing me, it was night after night of being woken up by her screams from night terrors, watching her detox from the morphine was pure hell, because I could do NOTHING to help her, all I could do was hold her (most the time she wouldn't let me), I would just sit by her side and pray for help and comfort, I remember thinking that once that stage was over anything else that came would be a piece of cake, boy was I wrong! It's been 2 yrs and Ellie as come so far, she has never stopped fighting, things are a lot easier than they were when she was first home, but there are some days and even weeks that things seem worse and I just want to hang my head a cry. When Ida told me things would be harder when Ellie woke at the time I thought that meant just until she recovered, but now I realize you don't recover completely from a brain injury, for Ellie the physical pain got better, she learned to walk and run again, she was able to remember how to talk (although this took longer). With everything that she is able to do again there is something that she can't do, Ellie hasn't been diagnosed yet but her Dr. and I are pretty sure she suffers from short term memory loss, she's our little Dory! Ya know I always loved the character of Dory in Finding Nemo, thought it was funny how she would forget things, but now that I live with someone who suffers from it, I don't find it that funny anymore.
Have you ever had a time when you were trying to think of something and you just couldn't recall it and it drove you crazy cause you knew that you knew it, and it frustrated you until you finally remembered? Now think how it would be to go through that everyday, all the time, think about how frustrating it is for Ellie who knows that she use to know the alphabet, how to count to ten, how to write her name, how to use the bathroom, and now she can't remember she has to be not just reminded but retaught day after day, the moment of remembrance doesn't come to her, she doesn't have that moment of clarity. I admit I struggle so hard with this, I often loose my patience with her, even though I know it isn't her fault that I have to repeat myself 10 or more times before she finally remembers only to repeat the process the very next day. I often find myself wondering if she will ever be able to move forward to learn, learning has become so hard, most kindergartners are so excited to go to school and learn, to share the information they have learned with their families, but Ellie hates going to school, she feels stupid because she can't remember things, she cries in the car when I pick her up because she can't answer the question I ask every day "how was your day?what did you learn?" because she simply can't remember. We are doing all the we know to do to help her and I know that it will get easier over time, I just need to keep reminding Ellie of that.
Ellie suffers from severe headaches, she still has night terrors (but they are getting better), and her ears constantly hurt, normal sound is magnified 10 fold. When I think of Ida's words I realize that things aren't just going to be hard for me for a short period of time, but hard for our whole family, especially for Ellie, for the rest of our lives, there's always going to be struggles and times when we just want to throw our hands in the air and walk away, but we won't because we "got this", "give it to God", "thine will be done.".
Through all of this, even on our hardest days I look at Ellie and smile, and thank my Heavenly Father for our struggles because they make me love and admire her more everyday! Ellie struggles, but she always laughs and loves, she is such a joy to be around, she can turn your worst day into your best, with just a smile and a hug, to me that's amazing because I know she is struggling. Ellie is one of the most kind and compassionate 5 yr old's I know, every time I talk with a teacher or a therapist one of the first things they tell me is that she is always thinking of the other kids in the class/group that are having a hard time, she's always lending a hand, she let's them know that they have a friend! If I could go back and change the events that have brought us here today with these struggles I wouldn't because I have learned and grown so much, I strive to be a better person, mother, wife, and friend. My family has been simply amazing through everything, instead of letting these struggles push us apart we have let them make us stronger as a whole and I wouldn't have it any other way!
Things are tough and some days are almost unbearable, but some days things are wonderful! I have learned to embrace the wonderful days because when I really think about it the wonderful and great days outnumber the bad days, we just need to "give it to God". I love my family with my whole heart and I know that together we can do overcome anything.
I hope you all have a Merry Christmas, hold your families close, with them you can do anything!
