Sunday, November 27, 2011

Two Years ago...

Two years ago today, we received the devastating news that our 5 year old son may have Duchenne Muscular Dystrophy. What a shock! You can read about it here. Two years have flown by at break-neck speed! At times, it seems like our son is simply getting better, but inside, we know that he is not. Duchenne is progressive and there is no positive outcome.

Over the last 2 years, I have met many new DMD friends via facebook. I am so thankful to know that there are others that truly share and understand our burdens. They go through many of the same feelings and emotions, have the same fears and doubts. I have met moms with newly diagnosed sons. I have encouraged moms on how to teach their sons how to take a pill. I have read of the struggles of spinal rod fusion surgeries, horrible school situations, picking out a new wheelchair, figuring out insurance and/or medicaid.

I have witnessed heated debates regarding the usage of steroids and the STS/Vecttor treatment. I have cried when another young man or boy has lost their battle with Duchenne. I have tried to offer words of encouragement to hurting families. I pray for those whom I consider my DMD family.

Not too long after our official diagnosis, I spoke with my great-grandmother on the phone. She knows and understands Duchenne due to the fact that in her younger years, she was a caretaker of a young Duchenne boy. She is a sweet Christian lady whom I admire. She told me something that has stuck with me over these last 2 years. Here is what she said, "You have probably asked God, why me? Well, why NOT you?" Not one of us are promised a life without trials or tribulations. As a born-again Christian, I firmly believe that the Lord allows trials in our lives to perfect us, or to mature us. He allows these in our lives perhaps for us to be able to minister to others who have similar needs. James 1:2-4 My brethren, count it all joy when ye fall into divers temptations;Knowing this, that the trying of your faith worketh patience. But let patience have her perfect work, that ye may be perfect and entire, wanting nothing.

One day, all of us will die. As much as we want to avoid the topic, we all have an appointment with death. There is simply no way to escape it. It would be wise for one to think about it and consider what the Bible says about it. Hebrews 9:27 And as it is appointed unto men once to die, but after this the judgment: One day we will all stand before God to give an account of our life. Considering the fact that all of us are born sinners, this is bad news. Thankfully, God offered a way for us to escape this judgment. He sent His Son, Jesus Christ to die in our place as the ultimate Sacrifice for our sins. All we need to do is simply repent (turn away from our sin) and accept this gift that God has given us. If we accept this gift, God will not see us on judgment day, but He will see His Son because He is standing in our place. This is the gift of salvation.

I felt provoked to once again share my faith in the Lord. Time is too short. I have the assurance from the Bible that one day, I will be in heaven when I die. 1 John 5:13 These things have I written unto you that believe on the name of the Son of God; that ye may know that ye have eternal life, and that ye may believe on the name of the Son of God. When Ben has the understanding that he too is a sinner, he will have the opportunity to be born again. What a blessing to know that this life is not the end of it all, we will one day be in heaven and see our loved ones again, all the while worshiping our Lord.

The diagnosis of Duchenne has changed my perspective on life a little. I no longer ignorantly think that life is generally a bed of roses nor do I take time with my family for granted. Time is simply too short. I am even MORE thankful for my salvation. It gives me joy unspeakable and holds me up when I feel like falling into the despair of a devastating, horrid disease.

Thank you Lord.