God is Faithful?!?!?!
What do we do when we face the unimaginable standing right before us? Something we could have never imagined happening to us is now barreling down like a freight train headed right toward you. What would you do??
In my almost 40 years of life I have had many many chances to decide if I would follow God through bad times or if I would stray and be angry about all the wrongs I felt happened in my life. It’s not God who leaves us…we choose to leave him, ignore him or not acknowledge him. Now, maybe at Christmas we think of him, maybe someone you know needs a prayer and you utter his name before going to bed…who knows…we all have our own journey & I judge no one! I mean normalcy is a good thing and you get wrapped up in it sometimes…
I knew from a very early age that I had an amazing bond with God. Take that however you would like but what it means is that I knew I would try to live a “christ like” life …believing that everything I did would either help or hurt someone and I would try to always help rather than hurt. That has become more prevalent the older I get and sometimes it has hurt me…actually many times it has hurt me, yet I can not change who I am. (“Just because you treat other people a certain way does not mean that others will do the same”) I heard that over & over again from Hut. I always wanted to make sure that if Jesus was standing right in front of me, he would be proud of what I just did or said. It was never really about pleasing my parents or grandparents or anyone for that matter but it was about making God proud of me.
Now here I am faced with the unimaginable and I have to admit I have questioned…”really God?, you seriously think I can handle this shit, you really think I have MORE lessons to learn?” Although I do not feel I have too much more to learn, I do see the good that has come of this already. Romans 8:28 – And we know that in all things God works for the good of those who love him, who have been called according to his purpose. YES!!! He will make something good of this because I have loved him and will continue to do so!!!
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Fear Not 
Although I do not know you, your story and testimony has touched me! Recent events in my life are having stomach cancer and losing my stomach before my first grandchild was born. Second grandchild born with Down Syndrome and some early Heath problems but I too agree. The I pulse is to question why?? But god has proven faithful and I am here to say it! Praying for you, your family and Drs during this tough time. GOD is with you!! Stay strong.
Thank you so much! I am sorry for what you are going through but stay strong & know he will not leave us!! Good luck! Xoxo
I always go back to “The Last Lecture”…Randy said he didn’t ask “why me” but why NOT me! I don’t know if that makes sense but when I go through rough health times with my downs daughter, I try to think of what God wants me to do to better life for not only my daughter but for others around me. It’s not easy at all but I know that it can somehow, someway make life better for someone else. Maybe when another mother goes to the Dr and says they are seeing things with their child, maybe just, maybe they will pay attention and not just assume it’s another mother seeing something that is nothing! We live with our children everyday and the Dr see’s them for 15 minutes every few months…so mom’s know! Look at what you are doing for others already Becky. You are bringing awareness to something that most people have never heard of. So already you are doing the work God intends for you to do. Always trust that God has reasons for what we go through no matter how bad the out come. I am once again fighting an infection in my daughter that is not clearing up and although it scares me to death, I don’t lose faith in the God that never loses faith in me. Keep the faith!
Thank you & you are right!! I hope all Dr.s can learn to trust a parents instincts more! Maybe that is the good that will come out of this. Thanks!
hola no te conosco pero comprendo muy bien por lo que estas pasando mi hijo fue diagnosticado con leuco distrofia metacromatica cuando iba a cumplir 5 años hoy el tiene 15 añitos para mi es un milagro que el este conmigo y hemos aprendido a vivir el dia como si fuera el ultimo lo disfrutamos al maximo y rogando a dios porque pronto aparesca algo para curar o detener esta enfermedad nosotros tenemos mucha fe en dios el sabe porque hace las cosasy hemos comprendido que somos especiales para dios por habernos mandado un niño especial y lo cuidaremos hasta que el decida ten mucha fe y llena a tus hijos de amor y estamos contu familia es duro pero dios no nos mada mas de lo que pdemos cargar ten mucha mucha fe te mandamos muchas bendiciones y mucha suerte en lo de italia NO TE MIENTO TENGO MIEDO MUCHO MIEDO DE LO QUE PUEDA VENIR MAS ADELANTE PERO AHORA HOY YO DISFRUTO A MI HIJO AL1000 NO SOMOS RICOS PERO DENTRO DE NUESTRAS POSIBILIDADES LE DAMOS LO QUE PIDE Y TRATAMOS DE QUE ESTE BIEN Y EL ES MUY FELIZ LO NOTAMOS EN SUS SONRISAS LLENAS DE AMOR Y TERNURA ANIMO FAMILIA Y MANTENGANSE ASI UNIDOS SIEMPRE BENDICIONES Y UN FUERTE ABRAZO DESDE PUEBLA MEXICO
God Bless you !!! I will pray for your Son!! I do agree God sent me thses special kids to take care of & I will do the best I can!! Xoxo Becky
You are so right. He won’t leave us and even when we don’t understand he comforts us! God is going to use this for his good. Jer 29:11 is the ultimate verse for those going through things. It means a lot to my family.
I love that verse!! Thank you for sharing!
Becky
Although we have never met, my good friends, Jenn Natale and Maribeth McCallus know you well. I am and will continue to pray for your babies each and every day. God is faithful, Becky! He never leaves us or forsakes us! He is holding Eli and Ella and all of your family right in the palm of His had. Stay faithful…He will see you through this! I admire your strength…even though I am sure there are days you don’t feel very strong, know that you are! You are just as much an inspiration as Eli and Ella! Praying for your miracle!!
Even though i do not know u and ur family i pray every nite for u and ur children. And there have been times i also wondered where God was in my life and made things happen to me and my family. Hun dont give up I havent. Keep ur faith all things happen for a reason. We r strong and i know that u r too. God Bless u and i will keep praying for ur lovely family.
YOu are so kind! Thank you for praying for my babies… I could never explain how much I appreciate all the prayers! Thank you! Xoxo
Our hearts continue to break for your family! You will continue to be in our thoughts and our prayers as you go through this journey! Thank you for sharing your story!!!!!
Becky,
I really should be working right now…you know;)
I just came across your Blog this afternoon and I read all the entries top down. I was drawn in by your beautiful words and perspective during this difficult time. You are a wonderful writer. I know that God is proud of you and that you are fulfilling his will by sharing your heart. Your faith gives hope to all of us. I am praying for your strength and peace and the healing of your babies, Eli and Ella.
Love,
Stacy
Hey Becky,
I am Kate “GroovyGrapevine” on Twitter; thank you for your response to my post for info/ resources. A friend of a friend’s son was recently diagnosed with MLD & I was gathing information for her.
My thoughts & prayers are with you & your family. Romans 8:28 is my favorite verse. I too find strength in my faith ~ with faith there is always hope.
Please feel free to email me any time~ kat@groovynn.com I will be adding the resources for MLD that I have come across to my site for others to find, so if there are ones that you recommend, please let me know. May I add your blog as well? I know how hard it is to find information when something is rare.
Wishing you the best,
Kate
Hi, I’m so sorry for what your family is going through. As I read through our blog I am struck by your strength. I don’t know if I could write as eloquently as you have. I am praying for your children. I live in Phoenixville as well and I found out about your family through the event at oaks that a friend of mine is helping organize. I also did some research and I am so glad you are trying to get into the study in Milan. (I have family there) My son has an enzyme deficiency (g6pd) but it is not anything like what you are going through. He would only be affected if exposed to specific medications, foods, substances etc. In the united states no one really knowsmuch about my sons problem (much like in your families case with no reearch here)but through Italian websites I have found an American organization to get information from because there seems to be more work being done in europe for these enzyme diseases. I passed it on to him and my daughter will be a carrier. I thank god for the Internet and for research. Im lucky The state of pennsylvannia did this special blood tests on newborns.
I pray your children get into this study and they can live a long happy healthy life. If there is anything I can do it is pray and support the fundraising. God bless you and I will be thinking of your family everyday and following your blog.
Becky, I read your blogs today, and my heart is breaking for you. I do not know you personally but found out from Amy Becton about the fundraiser which my family will be helping with. I found a close, true, relationship with our Lord myself through my own heartache 13 years ago, but I did find comfort in Proverbs 3:5-6 ” Trust the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths.” Thank you for your honesty, and for helping me to live for today. I hope to meet you and hug you (any have a glass of wine…ha ha). Blessings to all your beautiful family! Dawn
Thank you Dawn, pleae introduce yourself when you see me. I would hug & thank you for praying for my babies! God is definitley leading me here and he is the only thing I can truly put my trust in! Xoxo Thanks for the proverb! I love it!!
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