Once a month, I meet up with local moms from our DS association. Our association is so large that we have to break up into smaller groups for some activities. I love Moms Night Out. I was so incredibly nervous the first time I joined them for dinner. I felt like I was a new student at a new school. Of course, I enjoyed myself. I think Hailey is one of the younger babies in the group. Some of the children are in preschool or in the early years of elementary school. These moms have been there, done that. They've been on this journey longer than me and I trust their advice. More than one of them over the past 6 or 7 months have told me that the first year is challenging and it will get better. I listened to them but I'm not sure I truly believed them until recently.
Webster's defines "normal" as "a form or state regarded as the norm (standard)". It is a perception....it is left up to interpretation. What one person's normal is not the norm for another person. I don't even like using the word "normal" but it seems to be a word that most people can relate to and it is quite over-used. "Normal" to me is living life day-to-day with my family and friends. It is watching my boys go to school, play soccer, spend time with their friends, and pushing the limits as they gain independence and turn into young men (one day...I don't want it happening too soon!). It is watching my little girl overcome the obstacles that are put in front of her. It is breathing easier because her heart is fixed...it is dealing with her diagnosis of Down syndrome but not letting it define her. It had caused some of her obstacles and will continue to do so. It doesn't consume every thought, but yes, it will always be a part of our lives. We accept her diagnosis, but we don't use the word "can't". There is nothing we are telling her she can't do. In fact, we plan on pushing her to overcome her obstacles and to become the best person she can be. "Normal" is having dinners outside on the patio with the kids, it is playing kickball in the backyard with the boys, it is watching Hailey observe the world around her and watching her try to figure out how to get into stuff (especially if it is not for toddler consumption or suitable for toddler play). Our normal is watching our children enjoy living and become individuals.
Today, I was talking about "normal" and my lack of blogging recently. She looked at me and said, "What a relief for everyone. Normal is what we all prayed for after Hailey was born." Some people (more than likely, those outside of the world of DS, heart defects, or special needs) wouldn't understand why "normal" is such a big deal. A year ago, I was still reeling from Hailey's Down syndrome diagnosis and that of her heart defect. We were struggling with each bottle. Praying that she would actually finish the entire bottle and do it in under an hour. Praying with each doctor's appointment that she would gain weight. Praying each minute of the day that her heart would keep working hard enough to keep her alive. Praying each night that we would all see tomorrow. We lived in constant fear of the unknown and of the future. We hadn't learned much about DS and we were terrified of her impeding open heart surgery and we didn't want all of that to dominate the boys' life. We walked through life going through the motions.
Sometime after her open heart surgery, I woke up so to speak. I'm not going through the motions anymore. We are living life. I will admit though...my normal is a little different than it once was. We do have a few more doctor appointments...therapy appointments that we hadn't had before...but more than that has changed. We have changed. We don't take life for granted anymore. We see the world differently. Things that we thought mattered before really have little significance. We see people different...I see people as individuals..with thoughts, feelings, opinions...value. Every life has value. I don't judge as quickly or harshly...as I've said before, everyone has a story.
I don't know how long this "normal" will last but I know that I'm loving every minute of it and we will take the new "normal" in stride whenever it comes.
I guess the only thing these pics have in common with this post is this is what is normal now!
|This boy loves everything!!|
|He is getting too big!|
|She has a new obsession with sitting while taking her bottle.|
|She is always after electronics!|
|My little #4 didn't have a chance against yellow #10!|
|Can you tell she LOVES food?!?!|
|This looks so very painful! This is for all the readers who love the way Hailey falls asleep everywhere and anywhere!|
|My middle guy|
|This boy smiles through everything!|
|Look closely...she is asleep! She was even snoring!|
Happy weekend to everyone!