Fear Not

Some days you just want someone to be able to make it all better …you just want that person who really loves you and cares about you to be able to take away all the fear, sadness and most importantly the unknown. I so wish there was that person but as I am learning there is not any one person who can take anything about this journey away yet there are so many people who make it more bearable.

It is amazing to think this but this past week was 8 months since Eli was diagnosed with MLD. I am sure many people can relate with a date that sticks in your head and what you remember from that day. I am not extremely good at remembering what happened yesterday but I can remember everything about that day. The weather…my dream the night before…the wait to get the MRI…the fear when people suddenly started avoiding our gaze in the waiting room as we were wondering what was taking so long…the phone call saying the doctor wants to see you before you leave…seeing my baby laying there waiting to wake up as we were waiting for the doctor and most importantly the walk to the room to hear the diagnosis…I remember it like it happened yesterday….I also remember the slow ride home and the thoughts that went through my head…the barely there conversation with Hut, not knowing what to say…looking at my precious Eli in the backseat , knowing he has no idea what is going on and wondering how long I will have left to snuggle him, say his prayers with him and have him call me Mom.

From the beginning Hut and I used to wonder how people would react…we were now the downer family who had a “sick” kid. How would friends and family react?? I remember feeling bad for them …who knows what to say?? I know I still don’t know what to say!  It’s funny what we thought at the beginning, and it’s interesting to see how differently we think now. These kids are gifts, who are here to teach a lesson …only God knows that lesson and to each person they come in contact it will be a different lesson or it will be for a different purpose. I believe this with all of my heart. I have seen Eli alone touch people who barely know him and I feel blessed to call him my son! WOW! How amazingly far we have come in 8 months!

That being said I want to explain something to those who may be new to our story or more importantly new to their faith in God or straying from him. Eight months ago after diagnosis we came home and I got on Facebook…I found Amazing Sam who had MLD and had a bone marrow transplant. I emailed his mom and got a response right away. Jolene was an awesome Mom with great advice and was there to answer any question I had. Right away she told me about Amy Price who had 2 precious babies with MLD…she said Amy & Brad got their youngest son treatment in Milan. OK I contact Amy & she was so so helpful…giving me all of Dr. Biffi’s information in Milan. Immediately we contacted her and sent her Eli’s MRI along with blood work results. She replied fairly quick that they could not treat Eli…his MRI looked bad and he had juvenile MLD. SHIT!!!!!!!!!!!!!! Back to the drawing board…After much research we decided against bone marrow transplant. Just our personal decision and everyone has a choice. Ours was not going to be BMT. We got the others tested and the day Ella tested positive was not an easy one at all but after I slept on it I knew we had to contact Dr. Biffi again. I remember almost begging her…please think about it now that Ella was diagnosed. After what seemed like forever she agreed to have a neurologist write a report on both of them to let her know “clinically” how they were doing. We got our appointments and off we went. The neuro was amazed at Eli thinking that due to his MRI he should be in bad shape. Ella had a totally normal neuro exam and Eli was not too far from that. We asked that he write a report so we could send it to Milan. By now it is mid-October. I found out two days before Halloween that the report was done. I was so scared to read it and had to read over & over before realizing it was just what we needed to send to Milan. The next morning Dr. Brogan sent it off. After almost a month of waiting …and let me tell you it was not a great month…we got the email saying that they would see evaluate them both in Feb. OMG…GREAT news but another two months of trying to keep him stable. I am not in control…I can’t change this one way or another… that was one of the hardest things to learn. Feb 8^th came quick and we were off to Milan…The first day of evaluations went great and I think they were very surprised to see how good Eli was. He did great with all the tests except the nerve conduction test and they were a bit disappointed. I was scared…would this affect their decision? We met with the doctors Thursday and learned that we had to wait another two months to see if they would accept him. Once again…more waiting…how could I do this… it’s like a slow torture…and once again it is out of my control. Back home to wait and as you wait you just go through the motions of life waiting for the time to pass because your mind is just not there. I knew anything could happen in the two months we were home but I prayed all would stay the same! April 22^nd came quick and I knew he seemed GREAT! We got to Milan and he did just as well on all his tests as he did in Feb! After a long week of waiting we found out they would treat him. It is still weird to write those words as the past 8 months we have fought so hard and now it is here and he will have a shot at life. UNBELIEVABLE!!!!!

As I started this before I came to Milan… I can now add another amazing thing. Today we had Eli’s neuro appointment and as I watched him run down the hall, hop in a square, touch his finger to his nose (along with many other things) I felt that he seemed exactly the same as Feb! After about a 20 minute check up the doctor said just what I thought…NO CHANGE!!!! I remember thinking as he was running down the hall to grab the elevator how lucky I felt. I can’t explain it and I don’t think the doctors can either…he is just unexplainable. To me he is a gift… a gift that I am so grateful to accept! Thank you God!!

It’s truly incredible how the plan is perfect…even if it doesn’t turn out the way we want, there are many things that come from this perfect plan that can not only change our lives but the lives around us. Be open to the mysteries of life that surround us every day…you never know what you may learn.

~ by Rebecca on May 27, 2013.

Posted in Diagnosed