Most of you already know this has been a whirlwind of a month.
I have been blessed enough to meet the man I knew I was going to marry, and the man I was always looking for this year. He's been my rock & saved me from a downward spiral I was headed in. We've been enjoying our life together & he's been showing me things I haven't been able to see before. Life was good. Life was great. We had nothing but sweet, good, love songs floating in our heads & were walking on clouds & sunshine!
My love, Steve, has been having some health issues. It started in his right hand about 8 months ago. He had weakness that has worsened to the point where he is unable to do much with his right hand or arm at all. This weakness then spread to his left arm, as well as affected his balance and ability to walk. We all kind of looked at it as something "simple" or "curable" and thought that it would be a simple and quick fix.
Monday August 1, Steve had yet another doctor appointment, this time a neurologist. The neurologist quickly diagnosed him with ALS Amytrophic lateral sclerosis, Lou Gehrigs disease This news was devastating for all the obvious reasons! However, I couldn't believe it...no one could. No way could the man God finally provided for me to marry, no way could he have ALS. He's only 28, and it doesn't make sense! So with this came hope, and lots & lots of research. I swear I spent at least 48 hours researching it, and could explain to you the disease inside & out. We were blessed to get Steve in with one of the top neurologists in Augusta, GA on August 10. I took off work & took the journey with him. Through out this whole experience I have tried to remain positive, hopeful, & continue to encourage Steve. I was really beginning to pat myself on the back and thought just wait till Dr. Rivner sees him, he is going to find something else & everything will be OK! After spending 5 1/2 hours with the doctor, watching my babe get all kinds of tests done & seeing the look on his face getting worse & worse, I still kept my hope. After the last test the doctor then took a long pause and proceeded to tell us that Steve does in fact have ALS. Again, as I sat there holding the love of my life in my hands hearing the doctor tell him harsh truths, I still didn't want to believe it. I begin to ask if there is anything else that it could be, what else can they do. However, he did not provide us much hope, and started preparing us for life with Lou Gehrigs!
Now when a doctor (who can't give you any hope) tells you that the one you love may only have 5 years to live, how do you respond? I was speechless, and instead of trying to at all worry about my reaction, I was focused on trying to keep Steve positive. I fought back tears multiple times while comforting him and kept thinking, "this can't be it, there has to be something else..." That 3 hour drive home was a long and difficult one. Neither of us really knowing what to say or how to react. Both breaking down and trying to maintain our composure. My heart was broken! I had such hope that it would be something else, and heard my worst nightmare come true.
I shortly after received an email from a complete stranger (I've told so many people, and they have told everyone, and so on & so on) that was a friend of a friend of my mom's. The email read that this particular man had been diagnosed with ALS when he was 29 (In November of '97) and that he was still alive & fighting after 14 years. Immediately after this email I started hearing other stories of people living longer & some even living up to 25 years! And little by little, hope is restored!
The remainder of that day was shock, sadness, & lots of preparations for all the lifestyle changes that will now be required. The next step is acceptance, and with acceptance comes peace. This step is always the hardest, and one I must say will be a battle for a few months, but am hopeful that it will occur more & more each day!
Steve is one of the strongest & most passionate people I know. He is so full of love & has an amazing spirit. I have never met anyone like him in my life & I love him more than I ever imagined. When we first found out it was a possibility of ALS, we discussed that we still want to live our life like we planned. After getting the true diagnoses we decided that since we both want to get married & have children, we are just going to fast forward & do this a little sooner. I knew an engagement was coming, but Steve still did an excellent job surprising me! Last night he mentioned he wants to go to our river each day to walk, to remain as active as possible & to enjoy "our spot" for as long as he can. This morning he woke up in good spirits,and began to tell me the car ride there how much he loved me & that he and his family were forever grateful for me being in his life. I smiled & shared the same feelings of gratefulness, but still had no idea he was leading up to a proposal. After walking up & down the river twice, he finally suggested we take a break on our typical break spot. As we were sitting there we both noticed the peacefulness of the river & enjoyed a moment of peace & calmness! He then proceeded to get on one knee & go on with the best most heartfelt proposal ever! Of course chocking back tears I said yes & our spirits were lifted!
Our plan is to get married in 2 months! Yes, October 15, 2011 is our date. Although on the outside looking in this may appear to be bitter sweet, I see it as nothing but sweet! We love each other & there is no reason this terrible disease should stop us from sharing the life we planned for as long as possible! I think our relationship will only be stronger because of this. We now have an understanding for what is truly important in life. Life is a gift, and every single day needs to special. I know there will always be ups & downs, but for everyday I get with my love I am grateful!
There will be lots of ways to help us in the future, as it will be a long journey & we both appreciate everyone for their constant reaching out, support, & LOVE :) For now we are signed up for the walk for ALS, which happens to be the weekend after our wedding. If you would like to join or donate click here!
Lots of love!