Healing One Day At A Time And Then Some More......

When Emma was diagnosed every dream we once had for our newborn baby (and Ava's little sister) was violently ripped away from our thoughts and was replaced with... how long will we have with our sweet innocent newborn? What will we tell her sister? Will they have a relationship? Will she ever know how much we love her????? The questions will never end even as time goes by more and more questions come into our minds as Emma's parents, but one thing we try to remember is that no one knows the answers to the questions that fill our minds with anger, worry, sadness, even guilt at times.

Sometimes I blog/write to help remind me of our goals, our goals which consist of living in the moment and not the what ifs, or what could have beens. It is not always easy to live with that mindset, but we really try. When we go out and see family and/or friends who have little ones around Emma's age, yes, I wonder and wish and honestly I don't believe it will ever stop, but I do know that it gets easier. Yes, jealous moments happen when I wish it was Emma that Ava was playing with and holding hands with, as they run around the grass. But, then I realize Ava wouldn't be who she is and we wouldn't be who we are without Emma. We are better people and we have learned to not take anything for granted. Every moment we have is a miracle and we are so lucky to every second together that we are given.

Some days are just plain HARD, like hard like you never imagined hard. Sitting there feeling helpless as you watch your baby have countless seizures and praying she will breathe when it's over. The honest brutal truth is I awake up multiple times throughout the night either due to seizures and if not seizures just to make sure she is still breathing. Every morning I pray she is still alive. I worry every night that I will miss a seizure, one that she really needed me for.  It's hard to manage meds, feedings, therapy, Dr appts, work, and other duties of just being a mom....dance, breakfast, lunch, dinner, homework, bedtime etc. the day is completely exhausting and hard..... don't get me wrong, I am saying HARD, but NOT impossible. Some ask how do I do it?.....Well she's my child wouldn't you do anything for your child too??? My child may just need a little more and if your child needed more I promise you would find it in yourself to make it happen.

I titled this blog post... Healing one day at a time and then some more..., I did this because one day I feel like I am doing great and then BAM something happens and I could cry all day. But then something else can happen and I am on cloud nine feeling like anything is possible. Things may get easier to live with but I don't think I will ever not cry or be completely sad about Emma and what she has to endure in this life. I try everyday to make it the best it can be and do it with a smile, but I also know a good cry is always ok too. Living with so much unknown is hard but when you really think about it what is known? NOTHING...nothing is guaranteed for any of us. Sadly, anything can happen any day to any of us, but we know that and realize that much more with Emma than we would without her. The quote below says it all.....

Healing will be a constant in my life it is like an open wound that I will keep trying to heal and cover up,  but it never really ever goes away. But we try and we fight and we will never give up. I in no way ever feel sorry for us as parents and I never want any one to pity us or our family. Because we are blessed, Emma is a shining light in our family. The only thing I ever am sorry for is what she has to go through it can be painful to watch and understand. The second part that I feel sorry for is Ava and what she tries to understand about her sister at such a young age (6). For example a few nights ago she asked if we could all say a family prayer. So we all held hands and she prayed....she prayed to please help Emma's seizures get better because she misses her sleeping in her bedroom with her...she continued to pray and at the end she says again...please please help Emma I can't live without her....my heart broke, tears flooded my eyes and came rushing down my face knowing that one day that would be her reality. She finished the prayer and we all immediately held onto each other just crying. Later as I tucked her into bed we talked and I told her that we are always here for her if she ever needed to talk to us about Emma or had questions. I told her that sometimes when mom and dad are having a hard time we talk to each other and it helps us, so please come talk to us if you need us ok.... she replied ok... as we hugged goodnight she whispered in my ear mom you can come talk to me to if you need to when dads not home. SERIOUSLY you guys she's 6! How in the world could we have been blessed with 2 amazing little girls. I don't know but in those moments I heal a little knowing that we all have each other and that will never change.  

Healing happens at moments you wouldn't have expected...like this weekend even tho my niece who is only 6 months old and Emma is 2 years old, my niece played with and looked at Emma as a "typical" child. It made my heart burst to know that they too can have a special relationship. Even my nephew this weekend is opening his heart and mind to children that are different. He was so curious about Emma's feeding tube and seizures and I was so happy to talk to him and help him to try and understand Emma a little more. The next day he started asking, "Aunt Jaclyn how many seizures was that for today?' I would reply and he would say "o man thats too many" This heals me, this makes me smile that even tho Emma is 2, she is making a huge impact on so many around us. It makes my heart full knowing she's doing her job here on earth, educating us and showing us what life is all about.....LOVE!

In moments like this my heart heals a thousand times over. Seeing her happy and knowing she is loved means the world to me. For a moment she is "typical" and healing happens. 

SO FOR NOW WE WILL KEEP EMBRACING LIFE AND LOOKING FOR THOSE MOMENTS THAT BRING US PEACE AND A LITTLE BIT OF HEALING