It's been one year ago today since our sweet little boy was diagnosed. I have so many thoughts and feelings that I want to share with everyone or maybe it's that I just need to talk about it. When Karson was born he had to go to NICU for some minor issues that we thought were from being born 3 wks early and even the day we brought him home from the hosp we ended up in the ER due to his breathing. Then at about 5 wks, my dad asked me why he didn't move his arms. I just thought it was because he was early and tired, I just didn't think about it. Darren had been wondering the same thing but never said anything because I am such a worrier . I made a couple of appointments with the Dr. but I ended up canceling them thinking "he's fine". But the day before his blessing, he was sitting in his car seat and Darren was hammering something. I remember looking over at him to see if he would startle and all he did was blink his eyes. I think I knew in my heart something was wrong. The next day, I took both kids in for a checkup and while I was in the bathroom with Hadley Dr Baranko checked Karson . The second I walked in the room she said "I'm so sorry but something is seriously wrong with him. He either has muscular dystrophy, MS, or SMA". I didn't know what SMA was so I asked and she said "we won't talk about it that because that would be the worst." To say that I freaked out would be an understatement! I immediately called Darren and he knew why I was calling. We were sent immediately to Primary's because of Karson's breathing and when we got there they were waiting . Darren and I sat in a room with Karson and my mom waiting to see a doctor. The minute they checked Karson out they were very concerned and told us we would have to wait four weeks to get blood work back to see what it was. At that very moment, one of the neuro doctors walked in and said it just so happens, that Dr. Swaboda, one of the top SMA doctors in the world, was walking by and that she will come in and take a look at him. Dr. Swaboda walked in, pulled on his arms and looked at the involuntary reflex of his tongue and within 30 seconds diagnosed him with SMA. She said I'm going to be straight with you he could die today, in a month, a year or even 4 years, every kid is different. I can't even explain how devastating that was for us. I remember begging Abby (Dr. Swaboda's nurse) to just to tell me that I had a year with my son and she said "you know I can't do that".

Today is one year later and I am sitting here next to my son's crib as he takes his nap and I know that our time is limited with him, but I can't express how grateful I am for this day and that I have with him here with us. I'm thankful for time, because it heals! I'm grateful that I don't wake up everyday shaking from anxiety and feeling afraid every second of everyday. I'm grateful I can sleep at night without waking up and crying. I'm so thankful that I have my husband and my little girl that give me so much strength. Darren and I both agree that as long as Karson is on this earth we will not plan a funeral. Right now, Karson is alive!!! We want to celebrate that fact and cherish every single moment that we have with him. This in no way means that we are naive to our brutal reality. In fact, it is the exact opposite. Because of our reality we are choosing to not waste a single moment of life. If only we would treat all of our relationships this way! Because you never know what the future has in store for us or our loved ones. However, Darren and I have talked casually about cemeteries. To say that we have come a long way in a year is a understatement . I never thought I would be able to talk about that so bluntly! Darren has said on various occasions that although it is so unfair that we, as parents, have to talk about the impending death of our child, that we can do it and can go on with our lives!! What a difference a year makes!!! We're so thankful for his machines that assist him everyday. A year ago, we hated and resented them so much and now we come to love them. We're so thankful to our Heavenly Father for listening to our many prayers and the prayers of hundreds of others and that He has given us a chance get to know our son. Were thankful for the miracle that is Karson!