Tuesday, August 10, 2010

SMA Awareness Month

Wow. I am sitting here with tears flowing down my checks, snot soaked into my t-shirt sleeves and a very heavy heart for a dear friend who lost her little girl to SMA type 1 Friday night. I just found out. I can't imagine what their family is going through after reading the story, even though I know it's going to be in our future some day... Another reason why I am crying. Their little Annie was 9 months old. Skylar will hit that mark in 9 days.

In the past few months, Annie's mother and I have talked on the phone together, cried together, shared stories, exchanged ideas on how to play with our girls and just wondered why this horrible disease exists... We've talked about our daughter's deaths, purpose in life, and complete healing in Heaven (as we are both Christians). We dream about the day we'll get to have their little arms wrap around our necks and have them call out "mommy."

I've realized more and more that everyone dies from their body failing them... whether it be SMA and never fully functioning the way it should, from a severe wound that can not be healed, a horrific disease that attacks the body internally like cancer or just pure exhaustion after a full and complete life. Looking around at all of the people living around me with this reality in the forefront of my mind begs the question, "why are we here? what is the purpose?"

I just recently read an interview by the author of The Purpose Driven Life (his wife has been battling cancer this past year and it seems as though she's not expected to make it through). His words sum up all that has been on my mind, but much more eloquently, so I thought I would pass them on...

"In a nutshell, life is preparation for eternity. We were not made to last forever, and God wants us to be with Him in Heaven... I may live 60 to 100 years on earth, but I am going to spend trillions of years in eternity. This is the warm-up act - the dress rehearsal. God wants us to practice on earth what we will do forever in eternity. We were made by God and for God, and until you figure that out, life isn't going to make sense...

Life is a series of problems: Either you are in one now, you're just coming out of one, or you're getting ready to go into another one. The reason for this is that God is more interested in your character than your comfort; God is more interested in making your life holy than He is in making your life happy. We can be reasonably happy here on earth, but that's not the goal of life. The goal is to grow in character, in Christ likeness. This past year has been the greatest year of my life but also the toughest, with my wife, Kay, getting cancer. I used to think that life was hills and valleys - you go through a dark time, then you go to the mountaintop, back and forth. I don't believe that anymore. Rather than life being hills and valleys, I believe that it's kind of like two rails on a railroad track, and at all times you have something good and something bad in your life...

No matter how good things are in your life, there is always something bad that needs to be worked on. And no matter how bad things are in your life, there is always something good you can thank God for. You can focus on your purposes, or you can focus on your problems: If you focus on your problems, you're going into self centeredness, which is 'my problem, my issues, my pain.' But one of the easiest ways to get rid of pain is to get your focus off yourself and onto God and others."

So to give you a quick update, our splint appointment went well and we should get our new splints by the end of the month... we have some temporary mitt splints for her wrists and hands that are pretty adorable as far as splints go :) She did really well traveling and I think she's starting to get used to our routine and doesn't stress out as much, which is awesome! Skylar has had a great week and we are so thankful for no serious drops and "easy" days! No update on the extreme makeover front, but make sure to tell your friends to "like" our page to show that we have support (there's a link on the upper right hand corner of the blog). Thanks for your support with that and the other areas of our lives as well... we get our strength from God for sure, but those of you who are a part of our lives (through friendship, prayer, donations, gifts, cards, food, etc.) have helped us endure this with lighter shoulders despite the heavy burden resting on us.

So my last little bit here is to let you know that this is SMA Awareness month and we've officially started the GA Chapter of Families of SMA (FSMA) with our first meeting last week. It was so great to meet people - especially Sherry Manross (the mother of Rich Manross whose family donated the stroller and other supplies to us). Rio, a young woman who has a type 2 little boy, is President, I am VP, Casey (an aunt to an SMA boy) is Treasurer, and Sherry is Secretary. I am so excited about this and providing encouragement and support to all newly diagnosed families here in GA. Stay tuned for updates!

Spread the word about SMA and lets get funding for a cure!!! Peace.


  1. Ok, my makeup is ruined for the day. I need to wait to read your posts when I am home from work =). Thinking about you all lots this week and last. GREAT news about the first meeting of Georgia's Families of SMA chapter!!! Way to go working so hard to get that ball rolling! Have some more meals to drop by (as well as a cake.....mmmmm cakes and pies, cakes and pies). I'll call you today =)

  2. thanks for sharing ashley. anyone can use words like that.

  3. Hi Ashley! It is wonderful to get another update. I am so sorry for your friend who lost her baby. I can't even imagine the pain they are feeling. Thank you for posting that story about the husband and wife- I loved the message about life being train tracks rather than hills and valleys. I find inspiration in the message (even though my problems are not nearly as great as yours).

    I also wanted to let you know that in checking my facebook today (after being away from it for a good day) that some of my friends clicked "like" on the Home Makeover page- I have thanked them and I wanted you to know how far the support has reached for you guys. It amazes me how Skylar has touched the lives of complete strangers- seeing as they were compelled enough to make such an effort!

    As always- I send my love and many hugs to you guys! I think about you all every day and I pray that I will have an opportunity to get down there again soon!

    ~All my love

  4. I am so sorry you have to go through this journey but you do it with such grace. Just because you and that other mom have talked and she has faced her daughter's death doesn't mean you will. God can cure her today if it is His will. I don't know you but I love you in Christ. I praise God for you!