Any similarities?
For years I have known I have a hearing problem. My left ear is much worse than my right. It's always been kind of a joke within the family. I'm all about joking about the many ailments of my body. After my last hospital stay in Feb. I noticed a significant change in my hearing. It was pretty concerning seeing as how I already had trouble hearing. My family noticed it too. Some conversations were getting frustrating both for me and whomever I was speaking with. I was also becoming slightly embarrassed having to keep asking people to repeat themselves, especially people I don't know very well.
I decided it was time to take the plunge and revisit the ENT. Especially ine my insurance covers them t the U of U hospital again. My appointment was on Friday. To say I was/am a little discouraged is an understatement. During the test I knew I was failing miserably. After the test the lady came in and showed me the change that had occurred within a 3 year span. It was significant, surprisingly on both sides. I had to hold back the tears. When meeting with the dr. We decided to do surgery on my right ear and patch up the hole in my ear drum. Hopefully this will help my hearing improve somewhat. We will see how that goes and then decide whether to try the left ear.
I'm quite surprised at how much this news affected me. I mean, come on, I knew I was deaf. There was no denying it. For some reason seeing it on paper and seeing how much loss has occurred in such a short time, well, I wasn't prepared for that. My husband asked me why I let numbers affect me so much? You see, with CF my lung tests are based on numbers. The lower the numbers the worse I am. I always tell myself don't go by the numbers it's all in how you feel. It's a lot easier to say than to always do. Sometimes I think I make myself think I'm okay. I think it's a survival technique I've come up with, pretend all is well until someone or some numbers tell you otherwise. So unfortunately I let the numbers affect me more than I like. I'm trying to not be discouraged. M trying to tell myself it will all be okay. I'm in complete denial that a hearing aide may be in my near future. And I'm trying desperately to ignore the fact that CF has yet again taken something from me.
I still remember that hospital visit as if it were yesterday. It was January of 2008 and I decided to take this 2 week visit as a gift. A gift to take time for me and really search and ponder what was before me in regards to my future and my families future. I remember spending most of the first week just reading. Reading scriptures, talks by General Authorities, and my past journals. I rarely had the tv on which was very different for me. I usually had that thing on even if I wasn't watching trying to rid myself of the quiet. This time I welcomed the peace. I remember one day deciding that rather than pray, I was going to listen. Whatever popped into my head I would write down. I still recall what I wrote down and am amazed at how it's all worked out so far.
I remember finally, maybe for the first time since Cambree was born, feeling at complete peace with my family and our situation at the time. Ben, Emilee, and Cambree, the three Musketeers, the three amigos, threes company. We together could take on the world. I felt complete joy for our little family and all that lay ahead of us. For years I had struggled wondering if there was another child for our family and for years the answer that came was always the same, I'll let you know. At that moment I felt He was letting me know and then something came over me that I cant describe and the thought came, you need to have another baby. Confusion is a word that can't begin to describe what I felt at that moment. How could I finally feel peace about my family and in the next moment feel as if there was another one needing to join us?
I have since learned how the Lord works with me. He gives me peace and then he fills me in on the journey he has set before me, stone by stone, brick by brick it begins to unfold and this is when my journey for Lawson truly began unfolding. It took years for me to fully understand the way the Lord works with me. It also took a lot of second guessing myself and wondering if those thoughts were my own or from a greater power. As it has been fulfilled with many tears from fear, humility and gratitude I have come to know my Savior and Heavenly Father in a new way.
The peace that comes from our Savior is real. He is real! He Lives! He wants us to have joy and peace and love beyond measure. I am so very grateful for this knowledge and so grateful for the power He has in my life. I look into my sons eyes and I feel the presence of the spirit in my home continually. I have joy beyond measure and I wonder to myself, how is it possible for one person to have every wish they have ever wished be fulfilled? I truly do, and I could not be more happy than I am in these moments.
I cant believe that my baby girl is 7 years old. It feels like yesterday that we brought her home without a clue what we were doing! I think so far we are doing a pretty okay job. She is the most amazing little girl that I know. She surprises me everyday. Some good, some not as good:) I love how beautiful she is. She has a beautiful soul, the love and compassion that she has for others amazes me. She is friends with anyone and everyone. She gets along pretty well with everyone. One minute she'll be playing with her cousins her age and the next she is playing with her 3 and 4 year old cousins. Im so proud of her and so thankful that I get to be her mom. I think she is turning out to be a pretty spectacular little lady, even if she is a little sassy at times. I love you Miss Cambree Malli!
It's amazing how time works. My thoughts this past week have been turned to two things, both involve getting each child here. A year ago at this time we were getting ready to transfer our beautiful embryos into my angel sister in law. Seven years ago at this time was a very different story...
I know, every year I revisit the greatest and most challenging weeks of my life, so if you're tired of reading about it stop now.
I don't know why I feel the need to relive these events every year. I believe it is because I am still, and will forever be in awe at the grace of God.
The moments that have brought my children into this world are nearest and dearest to my heart. It is through these events that have shaped me and shaken me to my very core. They have brought me closer to God and my Savior and shown me with God all things are possible. I have learned just how strong and determined I am with the help of his love and grace.
I wont say the past 7 years have been easy, they haven't been. Fulfilling? More than I ever thought possible.
I remember coming off the vent for the first time and being wheeled from ICU back to my regular room. They wheeled me from my room in my bed and as I was about to head through the double doors I saw one of the amazing doctors that had helped save my life. He saluted me. I've never been saluted in my life and probably never will be again. It was a very poignant reminder that I had survived, I was a fighter and I was going to continue fighting. From that moment on I have vowed to go through this life and this disease fighting with everything I had and hopefully doing so with dignity and grace.
If someone would have told me 7 years ago that I would be where I am now I'm not sure I would have believed them. I had Drs telling me I'd probably never get off continuous oxygen, that I would never have another child, and that I had a 50% chance that I'd live five years. The older I get and the more I learn I realize I never should have been able to do any of these things. But I did. I survived, I'm still surviving; I'm still fighting. Believe me, I know it is not because of me that I have been able to do these things, but through a loving Heavenly Father that allowed me to live if I was willing to work for it. Words will never describe my love and gratitude for him allowing me to be here and raise my children. The past 7 years with my beautiful daughter have been more amazing than anyone could have told me. Now being a mom of two I never knew my heart could love so much, so deeply. I understand more fully the love our Heavenly Father and Savior have for us. I would have given my life for my little girl if it was asked of me, I'm just glad I didn't have to.
To read more about bringing Cambree into this world read here
Sometimes I have wondered, what if I was never born with Cystic Fibrosis? How different would my life be? How different would I be? Would I be as dedicated to life or living as I am? Would I be as caring and compassionate as I am? Would I have the same empathy for others? Would I have the same relationship with my Father in Heaven and Savior? Would I be as responsible or as kind? Would I be as happy as I am? Now believe me these are all things I need to work on still, but in all honesty, I believe that it is through my trials with CF that I have become this person and I wouldnt want it any other way.
Are there days I wish I didnt have to do my daily treatments? Or times I wish I could breath easier or have more energy? Absolutely! But it is through these times that I have found just what I am made of. I look around me and I literally want for nothing. I have everything I have ever needed and then some. I am truly blessed.
This past hospital stay didnt pan out exactly as I had hoped. My lung tests were a little lower than I had expected and for some reason this upset me more than I like to admit. I always tell myself to not go by the numbers but how I feel. This is easier said than done. I actually feel pretty good, which I am so grateful for. But after this particular test I took the day I got out of the hospital, feeling pretty good did not outweigh the fact that my lungs at that moment were not as "well" as they were a year ago on that exact same day. It overwhelmed me with many things but essentially tears was how it was expressed. I cried. I dont like to admit that I cry. Of course we all cry and we all need to, but I feel like I have built this personna with my friends and family that I am tough. That I can handle anything and I dont let it get to me. I think I have, but who knows, maybe thats all in my head :) Anyway, I cried, I cried hard, I cried for a long time in fact. This is the nature of CF, to lose more lung function and it scared me.
I'll admit, this isnt the first time Ive cried about CF, and pretty sure it wont be the last. But,it is in those very intimate, at times vey scary moments where I have found my Savior. I have felt His love surround me and even at times felt His arms embrace me and give me the courage to face the scary, the unknown. He has helped give me the faith to know that with Him anything is possible. I cried, and then, I remembered what I know and all that I have and I dried my eyes. I am facing the world with a renewed sense of self and I am determined to continue in my journey with CF, the good, the bad, the ugly...and sometimes smelly. Thank you CF for helping me be who I am. (I kind of like myself) Thank you for giving me the determination to fight you with every ounce of my spirit. Its on!
