Change

Change is a loaded word. 

By definition it has two meanings- to make something or someone different or to replace something with something else. 

Since last year, our family has gone through many changes. Changes in our feelings, changes with our dynamics of our family, and changes with our reactions to situations. A mentor shared an article with me that got me thinking about change and how hard it is to change people. One of the quotes from the article was, " Change the situation, or change how one perceives, interprets, or reacts to its details, and it will be easier to change behaviors"  We have had 8 months of Evey being with us and 6 months with her being at home. It got me thinking about how much growth she has made  just by changing her environment. She amazes us each month when she reaches a milestone!

We also changed her nursing company and boy has that been a blessing! The nursing company focuses just on pediatrics and they make sure they hire TOP notch nurses. I had the privilege of working with them with a former student and after talking with a nurse from the same company, I knew I had to switch. My only regret is that I should have changed earlier. Evey is not crying when I get home, has a peaceful night and is enjoying every minute she is with us until we go to bed. She gets undivided attention from the nurse and is loved by the nurse without the distractions of the TV. In this instance, changing the situation has changed my stress level and I am able to go to work and do my job and come home and enjoy my daughter instead of being stressed about the nurses not doing their jobs. 

Change is hard, but I think like the quote says, if we can change how we interpret, perceive or react to it, our behavior will change. I look at our older children and how they have dealt with the change of having a little sister with complex medical needs. They know and understand the needs that she has, but they interact with her and love her like nothing is wrong. They don't see the feeding through her g-tube or checking her oxygen saturation as a major change, they see it as part of life. The perceive it as normal and so their reaction to her is normal. They know that when her pulse ox beeps to silence it by pressing the button. They know to press the pause button on her pump to give her a break. It's a part of her life so therefore it is normal. After seeing this in my children, my own behavior on how I react to situations has changed. Is it really something I should argue about or is it my perception that is getting in the way of me reacting harshly? 

Our oldest, Laney, learned about change last month when a group of boys in her class started telling down syndrome jokes. We told her that unfortunately she will hear a lot of jokes like that in her life time and she will hear them about other disabilities as well. Even though we can't change who the boys are and how they were raised, we can change how we react to it and maybe they will change as they get older to understand joking about disabilities is not funny. We told her to continue being kind and spreading joy so that the negative stigmas that come with any disabilities will become normalized. She learned that we can't change people, only our reactions to those people.

I can't change the fact that Evey will always have several appointments each week, month and year. I can't change that she will always need interventions her entire life and need someone to guide her through life and possibly live with her so that she can be independent, but I can change the way I react to it so that my behavior is more positive instead of negative. It's not going to be daunting or stressful, but full of new experiences. I know I will need to be realistic with the things she can and can not do, but taking a positive approach will help change the outcome. It will help her see that she CAN do AMAZING things. It will show that we can't put limits on her just because she has a disability. 

Change is hard, especially when you are going through something so big you can't wrap your mind around it. I compare myself to the stages of a butterfly. I was a caterpillar just going through life, waking up, working, eating, spending time with the kids, sleeping; wash, rinse, repeat. THEN the diagnosis of Evey came along. My world was full of doubt, what ifs, anxiety, depression. I was in the cocoon stage, I had to break down to become new again. THEN EVEY came. My world was full of learning and growing and believing that everything would be ok. I became a beautiful butterfly! Each part of this journey brought new changes. She will continue to change me as she changes herself.

She amazes us with all that she has learned in the last few months. She has multiple holes in her heart including an atrioventricular canal defect that makes it hard for the oxygen to get to where it needs to be. Through all of this she has learned to suck through a straw cup, eat purees from a spoon, roll over on her belly, prop herself on her elbows to look around and do many sit ups to work her core trying to sit up on her own. All of that takes a lot of work and knowing her heart is doing what it needs to so that she can learn those skills is amazing. Her Joe Joe had a hole in his heart his entire life up until age 40. He played football, basketball and baseball throughout high school and then joined the Airforce and flew in an F-16. I believe she gets her strength from the Goforth side and her perseverance from the Carter/Miller side. She is not going to let anything get in her way of doing hard things!

                 

              

We have been given a date for her open heart surgery and it has given us a chance to prepare for the changes we will see after her heart surgery.  We will meet with the surgeon on February 28th to go over the procedure and ask questions. She will have her surgery on March 19th. We have talked to her interventionists and they have prepped us about regression. Knowing she may have regression has given us peace of mind that even though she may regress, she will eventually get stronger and be able to grow and develop with a whole heart! We are looking forward to this change we will see!

We started a sign up genius for others to join in prayer for the day of surgery and the days after. We would love for you be part of Evey's prayer warriors! Just click on the link and it will take you to the sign up page.

Thank you to everyone who checks in and prays for Evey! She is one loved little bee!

                                           Be like a bee- hardworking, wise and delicate!