Maci was listed as ACTIVE on the transplant list December 16th, less than a year after losing her kidney and only a year and 10 days since her first transplant. After losing her kidney last year, we thought she would be re-listed immediately. It was a little disappointing to learn that Memphis would not re-list her but not completely surprising. The time between listings allowed us to adjust. Maci ended up SO sick and looking back I had to have been in robot mode to have gotten through that time. I am very glad it's over and behind us. I do wish that another match would be easier but we went through that experience for a reason. I told the story when it happened but I will tell it again. While Maci was in the ICU, I was feeling down and depressed over the loss of her mere 20 day transplanted kidney. I felt guilt for knowing that someone made the choice to donate their loved one's organs, a kidney went to Maci and poof, it was gone. I woke up the following morning to a Mom's , wailing cry. That Mom had just lost her child. My perspective quickly changed. Maci's kidney could one day be replaced. That Mom lost her baby, who could not be replaced. Not that I think that Maci's kidney loss was to entirely teach me perspective but I feel that I did grow and learn through the experience.
I will admit that going through Maci receiving a transplant again, while exciting, it also petrifies me. I am horrified at the thought of the possibility of things that previously happened, happening again. Although fearful, it does not keep me from wanting to move forward and for a new match to be found. I DO want what is best for her and I DO want a better quality of life for her. I LOVED being dialysis free. I am enjoying her being dialysis free now and couldn't be more thankful that her labs remain stable to afford us such independence. Freedom to pick her up after bed time and leave her bedroom because she's not on dialysis. Freedom to pick her up and walk around with her as soon as she wakes up in the morning without having to go through the process of disconnecting her from her machine. Freedom to stay out "late", not having to be home by 8pm. I am working on letting go of bad thoughts and considerations of things that "could" happen.
While Maci was in the hospital last month, PT and OT came by and upon discussion, I ordered Maci a wheelchair. That was something that stung. I wanted my child to be sitting up, to be crawling or walking by age 3. Well, she's not. Now that she is 3 years old, she has transitioned from the State of MS Early Intervention/First Steps program into the program through the school system. It's disheartening to know that with her needs, she will not receive as much therapy as she has the last 3 years. If school is out, no therapy. That means spring break, fall break, summer break, holidays...no therapy. While I know some is better than none, I wish I could afford private insurance and allow her therapy once a week all year long. A friend once said that if the politicians had a child/children with special needs things may be different. There are MANY politicians with special needs children. The difference between them and me.....I have the government / state insurance for my child that puts me at the mercy of the things provided or not provided. I don't have the healthy salary and employer offered, government/state insurance that allows me to take my child to someone who accepts private insurance. Just like when I was in "corporate America". I don't think people need to be managing things that they haven't lived, experienced or truly know about. You can't look at numbers on paper and make an informed decision. Don't try to call it "affordable" insurance because it seems affordable to you if you aren't trying to stretch $150 or less that's left each month after bills are paid and your "affordable insurance" is $250 a month. Yea $250 is better than $500 but when you don't have it, it may as well be $1000. This country is badly broken in so many ways. I hope if not in my lifetime but maybe Maci's there is real progress, improvements made to better the way for all.
As 2015 gets started, I am trying to let go of fears. I sometimes feel ridiculous as I look at how far we have come and how the dreaded changes have put us in a BETTER place. Through it all, I know,
A Facebook friend lost a family member recently. This person posted an update that included the following: "God is in control and we all are on borrowed time so don't waste it
please. If you do not have a relationship with God get one please.
Because of my faith I will be strong and accept the fact God loves (the loved one's name was here) ten times more than I can imagine."
Those words resonated with me! God doesn't promise a smooth path. He doesn't promise a pain free life. He promises to help or get us through it all....whatever we encounter as long as we lean on Him. I could have so easily turned my back on Him when Maci was born, when we realized her additional medical complications, when we were jobless, when we wondered how our utilities would be paid, when we had to move from our home, when we wondered how we would have gas to get to and from doctor's visits. Go placed people in our life to motivate, to teach, to provide, to inspire and guide us. He also removed people from our life to enrich it and to take away negativity. Even when we face additional hardships, as time passes and I reflect on previous months, I continue to learn. I continue to grow. I continue to be thankful. I still have struggles and I will still ask God, "why?" but I ask Him why and I also ask him to show me the reason, to teach me how I can be better through the experience. Things are so much easier when you know the Lord. The person I quoted above is spot on, "If you do not have a relationship with God get one please."
Nursing school has been HARD! I have major Mom guilt from not spending as much time with Maci and I often feel like giving up because I feel like I am abandoning my family. My house was a mess from moving in but last semester it was an even bigger wreck. I slept (as much as possible),studied, tried to cook a meal from time to time, studied, laundry was washed but often never made it from the couch or chair to the closet or drawers and I studied. I kept things clean but have mercy, things were everywhere. I did some organizing over the break and feel a bit better about my house now. I am hoping that things can stay manageable through this next semester.
I cannot explain my surviving my first semester without giving a lot of credit to prayer and placing my worries at the Lord's feet. There were two tests that I felt as if I was just not prepared to take. I was scared of failing because things happened and interfered with my studying. I prayed that my common sense would over come my anxiety, that I would retain more information in the short time I had to study and that I would be at peace with any outcome. Even though I KNOW that I am doing something that I was meant to do, that God provided the way, I know I still have to do my part and sometimes, I fell short. God definitely picked up my slack and proved to me that He is in control. Several of my Facebook statuses said that Jesus took my pencil or Jesus took my mouse. It's true! I used to have unbelievable test anxiety and am prone to still become tense before an exam. AND, other than a small miracle, how else do you explain ME almost having an A in a math class (I was proud of my B)?
I know people who look and act happy on the outside but based on actions, I see their misery. It makes me sad. They allow bitterness and past experiences to eat at them, think they are owed something and I just want to shake them and scream wake up, give it to God, learn true happiness! Their poor choices, their cynical attitude, their lifestyle effects others whether they realize it or not and it does so negatively, in many ways. Alcohol can't make you happy. Money can't make you happy. A significant other won't make you happy. Trying to impress others for the wrong reasons, won't make you happy. Cheating on your spouse or significant other won't bring you happiness. If you are always looking to other things, looking elsewhere for things to make you happy, you will never find it. Until you learn to be happy in your own skin, in your own circumstances, with yourself and the things you DO have you will never experience true joy. I don't understand how some wouldn't want more for themselves and how they become complacent with being stuck, stagnant, declining to grow. If you find yourself needing a vice to help wind down the day, if you find yourself as an adult having had multiple bad relationships or they never last, if you are always making excuses, if you never feel whole...stop looking for things to fill that space and work on being at peace with yourself. You have the power to take control of your life. If there is a dream you gave up, find a way, make a way to make it come true. Don't say "I can't." because you can. Pray about it and if it is truly something you are meant to do or have, you can achieve it! It's not too late.
Had you told me a year and a half ago that I would be in school, I would have laughed at you. If you would have told me I would be accepted to a nursing program, I would have laughed at you. This is my path. Negativity, self destruction, failed after failed relationship, pity and bitterness is not a path that God intends for you or anyone. Are you on the right path?
If you're not sure, ask Him to show you. I guarantee you won't be disappointed. I have learned to be thankful while having very little. I have learned
to appreciate hard times so I can better acknowledge my blessings. There has been "blood, sweat and tears" with school. There are sacrifices made by me and my family but we know it is
only temporary for my purpose to become reality. This sacrifice is for a better life for my family and for me a career in helping others. I wish everyone could feel the sense of peace and purpose that I have become to know this last 6 months.
I will make mistakes as a Mom. I only pray that I teach and lead by example. I don't want to be one of the "do as I say, not as I do" parents. I don't want Maci to make bad decisions because of something she knew I had done and is only doing as she learned. I don't want her to grow up never wanting to do something because she associates it with bad memories from growing up.
If I were a smoker, I can't be a hypocrite and tell Maci to never smoke or that it's bad for her. If I drank alcohol or used drugs, I can't be a hypocrite and explain to her how drugs and alcohol can take over and ruin your life. I can't tell her of the importance of having a relationship with the Lord if I don't have one myself. I will strive to teach her by example.
This is a blog for Maci's story and I got off track a bit today. I guess as I look back over the last year, despite continued struggles, I am THANKFUL. I am thankful for God continuing to hold my family in the palm of his hand. My wish is that anyone else who is struggling can find strength and peace in knowing that they are not alone and strive to improve their life in areas that they do have control. Make the choice to live bravely.
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