I guess I am just a hard headed person. I’ve always had goals for my family. I’ve had goals of success, fun, trips, and dreams for my family. Watching Hayden struggle was not part of my plan. It often makes me angry to have to add this to my “plan.” I am constantly reminding myself that God developed this plan for a reason. We must continue to go along with plan even when we do not understand why. The Lord has an incredible plan for Hayden’s life, and we are honored to be his parents. God must really trust us! I am constantly telling Hayden that God has his hands around him. What a week! Hayden went from having great days to bad again. Why does this continue to surprise me? I will never know! I guess I have gained so much hope for good days. I have not let go of trusting in my miracle. Unfortunately, this is often a letdown. One of the hardest things that Brent and I have to do is watch Hayden suffer. Today, we have added another dose of valium. We are praying that this will keep him comfortable. I am so sick of mixing medicines, but if they will make him feel better it’s worth it! I am always so quick to place a Facebook status bragging about his good days. I never inform people of the extreme of his bad days. I guess I just try to forget about the bad. Hayden is in pain. He is hurting from muscle aches and gas build up. The double dose of valium is not phasing him. I am praying that the third dose will do the trick.
The main reason that I am posting a blog today is curiosity. I research rare diseases daily. I am always hoping that I will see a post about new research or a new cure. After all, I feel so helpless watching Hayden suffer without a cure. As far as we know, we are the only living case of adenylosuccinate lysas deficiency in the United States right now. I have only found one other mother in the USA to talk to about the deficiency. Her son passed away at eleven months. She has given me a lot of advice. I also talk to my friend in Canada. She had two daughters with ASLD that both passed away this year. Tracy and Jolene have both informed me of the seizures that would last over three hours. They also prepared me for the thirty plus seizures a day. Thank you God for these two women! I am so blessed that I have them to talk too! They did prepare me for our 3.5 hour seizure on January 15. They answer all of my questions. They pray with me and for me. They help me keep my head up. I must say that I could not have done it without their preparation. I must admit that I wish I had someone to talk to that has a child living with ASLD. Unfortunately, I do not know if there is any more living in the world. As I look at the “stats” of my blog, I see that over 5,000 people have read it. I notice that a lot of different countries have read it. We have had people from Canada, United Kingdom, Australia, Mozambique, Zimbabwe, Guam, South Korea, Netherlands, Brazil, and Costa Rica few our blog. What does this make me believe? It makes me believe that somebody in these countries are dealing with ASLD too. It makes me believe that they are struggling for answers just like us. PLEASE IF ANY OF YOU ARE READING THIS BLOG, CONTACT ME! IT IS SO HARD FEELING LIKE WE ARE ALONE. I WOULD LOVE TO KNOW HOW THESE PEOPLE FOUND OUT ABOUT OUR BLOG. IF YOU HAVE A CHILD LIVING OR WHO HAS PASSED AWAY FROM ASLD, I’D LOVE TO TALK! I’D LOVE TO ANSWER QUESTIONS AND ASK YOU QUESTIONS IN RETURN. I AM DESPERATE FOR ANSWERS, DESPERATE FOR HOPE, DESPERATE TO KNOW THAT WE ARE NOT ALONE! MY EMAIL ADDRESS IS LAUREN122885@HOTMAIL.COM.... I HOPE TO HEAR FROM YOU SOON!
Be strong and courageous, and act; do not fear nor be dismayed, for the LORD God, my God, is with you."~ 1 Chronicles 28: 20