Samantha Marie - Julie's Story

Julie wrote this while she was pregnant with Samantha and it shows her trust and faith in God and tells us the story of Andrew and Samantha. 

We were thrilled on July 26, 2007 when our second child turned out to be a boy, SURPRISE!!! Could life get any better...one of each -- a boy and a girl. We felt as if our family were complete. Our first few weeks were filled with many cuddles, frequent feedings, long nights, and lots of love for our new little guy. As most parents do, we had hopes and dreams for our new little one and plans for the family God had given us. It wasn't long before we had come to understand Proverbs 19:21 which says "Many are the plans in a man's heart, but the Lord's plan prevails."

When Andrew was about 6 weeks old, we noticed some developmental delays and basically a lack of movement in his lower body. We took him to our family doctor who referred us to a specialist and thus a month and a half of testing and waiting began. Through this time, we had hoped and prayed for the best news possible -- that Andrew just had some developmental delays. If that were the case, he could catch up with the help of physical therapy, which he had already started. There were several other options from a tumor on his spine to some sort of muscular disease.

On November 7, 2007, we received the worst news possible. Andrew was diagnosed with Spinal Muscular Atrophy (Type 1) a disease that Shane and I had never heard of, but soon learned is the #1 genetic killer of children under the age of 2. All children with Type 1 have a shortened life-span as do those with type 2 to as well. However, 90% of children with Type 1 die before their second birthday. SMA is motor neuron disease. This disease destroys the nerves responsible for controlling voluntary muscle movement. The muscles that control breathing, swallowing, head and neck control, walking, and crawling are the most affected. This disease doesn't affect a child's intelligence. Andrew was very alert and attentive and oh so SMILEY!!! SMA is actually relatively common (as common as Cystic Fibrosis) yet it is virtually unheard of in the general public. This disease is very similar to Lou Gehrig's disease. There is currently no cure or treatment for SMA, but they are making a great deal of progress in their research efforts. I could go on and on describing Andrew's disease to you and sharing stats, but I don't want to bore you. If you would like to learn more about SMA, there is a wonderful webiste you could go to. It is fsma.org

Last November, because God blessed us with the help of family, friends, and Shane's colleagues, we were able to quickly plan a family vacation to Florida in early January. It was our desire to take Brooke and Andrew to Disney World (and the grandparents and Uncle Jon) and make some family memories. We knew we would always have the pictures and video of Brooke and Andrew together to share with Brooke someday. Well, we do have a lot of pictures and video to now share with Brooke, but none from Disney World. After being welcomed to Florida by frigid temperatures and spending just 1 and half days there, we had to make a horrible call...an emergency call because Andrew had stopped breathing. Andrew spent four days on a ventilator at Children's Hospital in Orlando, Fl. On January 7, 2008 (exactly 2 months after his diagnosis) Andrew went to his heavenly home, where he can now move and breathe perfectly!!!When we planned our trip to Florida, we thought we were going to the "happiest place on earth" to enjoy our time as a family, but God had other plans. God took us there so that He could take Andrew to the truly happiest place, HEAVEN. I believe God wanted us to be there for that purpose...I can't explain why, I just trust His plan. Perhaps, it's because I have some of the most awful memories of life and certainly the worst memories with my son there in Florida. And I am so thankful I don't have constant reminders of those days and hours here at home.

I praise God that Andrew now is in a perfect place where he will spend eternity and that because I know Jesus as my Savior, I too will someday be with Jesus and with my little guy. But I can't say this is without pain...for here on earth, there is great pain and sadness. I think of Andrew and miss him EVERYDAY. Some days are easier than others as I can say I truly have the peace that passes understanding. That can only come from God and I believe that the prayers of others are what get me through the days and makes this difference.

I also praise God for HE IS GOOD...HIS MERCY ENDURETH FOREVER. Even when I can't understand God's plan and see where the good is, I trust him with my life...each day and the future. We made a decision last spring to have another baby and God has blessed us with a little girl, Samantha Marie, due to arrive in late February. After undergoing prenatal testing for SMA, we learned on October 1, 2008 that Samantha also has Spinal Muscular Atrophy. We have struggled with many questions and of course are heart-broken. It's so difficult to know the fate of your child. And although we know this disease and it's effects well, we also know the journey with each child is oh so different. So, we live with the knowledge that Samantha will not grow up as most children do, but will live a short life here on earth before she also goes to be with Jesus. Yet, we don't know how this will play out...what will our time with her be like. I KNOW that we will treasure each moment and thank God for the time He does give us, just as we did with Andrew. And although in our humanity, we have many fears and questions about the future, we still trust in our GOOD GOD!

And that brings me to another point...we know that Samantha will live a shortened life as Andrew did, but do any of us really know how long we have on this earth? God could allow something to take our life or our children's lives today. Christ could return at any moment. So, how do we respond? Do we know for sure that we're going to spend eternity in heaven? I DO because I've put my trust in the only one who can save, Jesus. Do you? Does it change how we live? How we treat our loved ones and even strangers? Does it strengthen our desire to live for Him? I challenge myself and maybe you too with these thoughts.

PLEASE pray for us...for peace and joy (that can only come from Him) despite our circumstances. Pray for our faith to remain strong even through the most difficult of trials. And pray for our three-year-old daughter, Brooke. Pray for wisdom on our part as to how to deal with these losses in her life and through these hard times. She still misses Andrew and talks about him often -- it breaks and blesses my heart at the same time. She aslo talks about Samantha DAILY and is so excited about being her big sister. She does not know about Samantha's disease. We've chosen not to share that with her at this point. I think some of my greatest fears come when I think of how this all could affect Brooke and yet I know God can use all things for good (Rom. 8:28) and I pray that He will in her life.

THANK YOU for taking the time to read and thank you for your PRAYERS for our family!!!!