I sit here on the way home Milan and I feel the same as when I flew here. The not knowing has to be the worst feeling in the world and now we have to wait 60 more days! 60 days to try to keep Eli stable from this dreaded disease to keep him healthy and to slow or stop,his neuropathy. The pain I feel is indescribable right now. The thought of coming this far in five months and not making it the whole way is enough to spin me out of control! To know if he is not accepted he will essentially come home to live out his life is enough to make me sick to my stomach.

Every time I close my eyes I see the same thing… Me knowing there was something wrong with him for so long … Maybe I pushed too late….. Maybe god was giving me signs but I followed them too late. If I just pushed two months earlier maybe we would be in Milan getting treatment right now. This was my one job….  I am not a lawyer,
teacher or any professional for that matter. All I ever wanted to do was be a mom…. This was the biggest responsibility I was given and I feel like I failed
Eli. People may think I am wrong for thinking this but no one truly knows how you would feel until you we’re traveling a journey like this.

I have learned that you can’t barter with God. I have tried too many times in my life and it does not work. Please God make my anxiety go away…. Please God let me have a better relationship with my family…. I will do whatever you ask just get me through this moment. I remember being in this position many many times in my life through many different struggles as I am sure we all have….BUT it does not work. You can’t barter with God and he’s not taking bribes. So where does that leave me?

Some days it leaves me angry, having more questions than I know I will ever get answers to…this is not a fun place to be. I remember reading once before something written by the poet Rilke” Be patient with all that is unresolved in your  heart. And try to love the questions themselves.  Do not seek for the answers that cannot be given.  For you wouldn’t be able to live with them.  And the point is to live everything, live the  questions now, and perhaps without knowing it,  you will live along some day into the answers.” I love this! We want answers so bad but might not be able to even comprehend them or what them mean. I will keep asking and hopefully someday I will understand a little more than I do today”. On the other side there are days when I seem to get lost in life and seem to forget even for a moment  what lies ahead. Those are the best moments where I am just present… Thank God for allowing me to enjoy the present moment more now than I ever have.

Now it is a week later and I have been home from Milan, off to Mexico and home again only to be leaving for Disney in less than a day. I have to say I am bit overwhelmed and not as excited as I should be but nonetheless we are going. Ella has been excited for years about Disney so she should have a dream or two come true while we are there.

When I have a second to think about how I will feel when they both get treated in Milan it will be an excitement I am sure I will not forget…another thing that I will never forget is how it will be from the collaborative efforts of so many people who love my kids and who have gone above and beyond what they ever had to do. Honestly it is very emotional for me to see everything that Eli’s teacher does for him at school to keep him strong and smart also his gym teacher, his counselor and countless others who make it an amazing group effort! My friends and family who check on us, run errands for us, do things with the kids…the list goes on and on. We are so lucky! I can’t wait to celebrate with all of you when the kids come home healthy at the end of the year!!! (POSITIVE VIBES PEOPLE!!!!!)

The most important thing for me is knowing that through my darkest moments that I have had recently God has carried me  through them all! On days when I just can’t picture the future and what it will look like or when I just want to crawl into a hole and not come out I have some amazing friends praying for me and lifting me up so I can be strong for tomorrow. Thank you to all those friends who are loving me through this and thank you to the God who will never leave and will give me the strength I need EXACTLY when I need it!


~ by Rebecca on February 22, 2013.

11 Responses to “Waiting”

  1. You are truly Amazing ,Becky ……We are praying for you and your family…Have a wonderful time in Disney !!!!!!! xxxxoo

  2. Thank you Becky, once again for sharing your feelings with us. You are all continuously in my prayers. Enjoy your trip tp Disney. I will be thinking of you and sending good thoughts your way.

  3. As always you are amazing. I am sure Ella will have the time of her life and that is so exciting. Keep doing what you are doing…..you are the best…always praying for your family and love you all so much.

  4. Just praying and visualizing Eli and Ella returning home from Milan healthy and happy !!

  5. I just wanted to say that your strength and love amazes me.

    Hindsight can be so hard, so sad, so frustrating and you have to remember that we are only human, not psychics and we can only do our best.

    I look back and it breaks my heart knowing that I knew something was wrong with my oldest when he was two. I have been told that if he had gotten early intervention at 2, he would be a different child. Life would have been so much easier for him. Instead I followed advice from his pediatrician, teachers, family, etc, and he was not diagnosed with autism until a month before he turned 6. Because of me, he missed 4 years of therapy that would have made a huge, life changing difference in his life.

    I know it is apple and oranges comparing our situations but I can imagine how you feel. It took me a long time to be able to say: at that time in my life I was the best mother I could have been and I could not have done any better. And I try not to look backwards and wonder…

    I am so glad I found your story through Facebook. I am interested in learning more abut what they are doing in Milan. I know of a family here in Southern Maryland who has a very young child (1 yr old I believe) with Krabbe.

    Wish you guys the best!

  6. Becky, your honesty is always breath taking! Our prayers for you remain steadfast! Love to all and have a fantastic time in Disney!!

  7. You really are amazing as others have said. The Lord God is watching you even when you travel this horrible journey. So continue to keep you heart open to him as he is always there. All my love, Dede Perry

  8. You truly are amazing and strong as others have said. Continue to pray to the Dear Lord God as he is always there walking with you even when the journey is difficult. I have traveled this road before with my brother’s family and even my Dad so I sort of know what you feel. However, everyone deals with life differently. But aside from me please continue to pray and that is what my family is doing for you. Love, Dede

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