Back in the day, like when I was younger and even up until I had Kaleb, I didn't mind going to see the Doctor. Over the past three years, that "like" has turned into an absolute hate. I hate 99.9% Doctors with a passion, I hate hospitals, and the sterile hospital buildings and offices. Although, I am grateful and can appreciate what Doctors are capable of doing for those in need, as well as, for the sterile and clean environments that they work in, I still HATE EVERYTHING ABOUT THEM!!! It is amazing how life's trials and twists and turns can change our opinions, our mindset, our sensitivity to things and make us tough and callused. I feel this way. Even though I feel that I am still an incredibly sensitive person and strive to recognize and tend to the feelings of others and be there for others, I also feel so hard and callused at the same time. I don't like feeling like this and I don't know how to change it. In some ways, I feel like I have lost "hope" even though I still continue to have it.
Today, I took Karmindy to her 3-year well check up. Before Karmindy was born, I celebrated every well check up with Kaleb. I loved seeing from month to month and year to year the progress my little boy was making. When Karmindy came along, it wasn't that I didn't celebrate but things took on a whole new meaning. I was happy and celebrated but felt hollow and empty inside too. Each visit I try to find the good. Today's visit I found out Karmindy has perfect 20/20 vision. Our Doctors nurse was happy to report that she has never in all her years of working been able to record that a 3 year old has perfect vision. Yay, for Karmindy!! However, even though I celebrate that wonderful and miraculous thing like vision, I dread to talk about my daughters heart condition. The heart is also a wonderful and miraculous thing. After Karmindy's Angioplasty in June, my heart has been so, so heavy because the condition that Karmindy now has. It is rare. The Doctors haven't seen it before. No one has really seen an aorta fold the way that Karmindy's has been doing above a coarc surgery site. Before the surgery, I could do research and scour the internet to find outcomes of coarc patients but now I cannot scour the internet to find "Hope" for what Karmindy has. How can I have "Hope" if I cannot find percentages or facts that will tell me that my daughter will be ok or help give my mind a little rest? I know that I need to have more Faith but how can I have more, when after watching my daughter go through this for three years,? My bucket of faith is wavering on empty. I don't' feel like I have any more faith or strength to give. It is hard to explain to friends and family and even though they offer support and love, and I appreciate all they do, it is hard because they don't quite feel the anguish I feel. There is nothing more painful then watching your child suffer or go through something that could potentially be life threatening and feeling like you have absolutely NO POWER to help them. I want to make this go away for Karmindy. I want to have my little girl with me always...
Why do we have to continue to go through this hard stuff. It seems like it never ends. What am I supposed to be learning from this? Maybe the faster I learn the faster it would go away?
Today,I had a long talk with my wonderful pediatrition and we cried together over Karmindy's latest surgery and prognosis. I have the most remarkable Doctor for my kids. She is a mother as well, and knows where I am coming from. It helps to have a Dr. who has knowledge and empathy. These are qualities that are almost never found these days among health care providers.
I feel blessed to Have Dr. Val.
After talking about "Heart Patches" and stints among other fun Heart Stuff with my dear and patient Doctor and me asking for "hope" on how Karmindy might weather over the next few years of life, I left feeling so helpless. I sobbed all the way home.
I have tried to be strong over the past 3 years and have celebrated those wonderful milestones and have continually been given some hope from doctors. Now our last options with Karmindy are waiting and seeing how her body will fair. If it does not fair well, then we will Have open heart surgery in store for our Daughters Future. Open Heart is not something I feel like I can mentally and emotionally handle...again. We have already gone through this. This condition that Karmindy has, will it ever be fixed? I feel as if its not an if anymore but a when. It feels like time is ticking...and I am not for sure what to expect. I found out today that a patched aorta isn't an end all fix but one that may need to be patched again and again.
If they can't fix my daughters heart, who is going to fix or patch mine if she doesn't make it. Why do trials have to be so hard and almost suffocating?
All I want is to Have Hope that all will be ok for my special little princess, my little girl.
3 comments:
I don't understand how you feel, but can definitely see this is an extremely hard time and huge trial for you and your sweet family. Wish I had a cure or percentage or even anything to say or do that would help the hurt lessen. I know you are strong and have a wonderful family supporting you. I'll add you to my prayers that you can find the kind of peace and hope that you need and want. Hang in there... -Jeni
Ashlee I wish so much that I could do something to ease this burden for you:( If only it was as easy as peanut butter(hee hee!). Seriously though I pray for you and your family and I hope that Karmindy's stubbornness covers her heart to! Then there won't be any problems in the future:) Know that I'm here when you need to cry and when you need cupcakes and Diet Coke to drown your sorrows in!
I don't understand what you are going through. I won't even pretend like I do. I don't feel that suffocating anguish, but a lot of people do. You most definitely aren't alone in feeling helpless or feeling like you don't have control. When my sister lost her baby, there were no words of comfort...none. But somehow and someway she was able to find the strength to overcome the anger she had for her Heavenly Father. Don't lose faith or hope. Some how and some way, you make it through those hard days. Unfortunately your's isn't going away anytime soon, take it a day at a time. Hang in there. She is a precious angel and you don't want to worry about the unknown while you can enjoy her now. She has already surpassed obstacles no one ever thought she would over come. She is a fighter and you need to be a fighter too. I love you so much and wish I could say or do something to help you. This is your trial in life. You will be richly blessed. (I know you don't want to hear that) but it really is true. Hang in there, call me anytime...we can cry together!
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