Source:  Diagnosis    Tag:  leukodystrophy diagnosis
July 23, 2014 my life was turned upside down. 
I received a call from our neurologist which started like this, "I hate to give news like this over the phone...". My heart dropped. I immediately started bawling and didn't even hear what she had to say. I unplugged my iphone from the charger where I had just placed it, grabbed my iPad and texted Jason, "come home, neurologist on phone, not good". Dr. Green babbled on for a long time throwing a lot of chemical terms at me and then I heard, "Leukodystrophy". She asked if I had any questions and all I could think was, "so what's the bad news?" ... But I couldn't ask, because I was afraid of the answer. She said her only advice now was to wait until we saw the metabolic specialists so that we could have more answers and not to google 'Leukodystrophy.' Immediately after the call ended, I google 'Leukodystrophy'. It seems bad, but surely, there is a cure or some treatment! Jason comes in and I try to pass along anything I can remember from the call. Since it wasn't much, I didn't really alarm him. He left to return to work and I left to get Noah from school. When I pull up to the Shul where Noah goes to school, on the phone with Jason, I get another call from the pediatrician. I join the calls and we hear a tone that was not expected. "This is Ara.". "Hi Ara, I have Jason on the line too". "How are you guys doing?" She says in a soft tone. "Well I guess were just confused". She continues to talk about how she will learn along with us as we discover what this disease means and then Jason says the thing every parent thinks "as long as Noah can live a long happy life, then we can deal with any of the challenges". . . Silence. "That's the thing," she replies, ... And then I'm sure she said something else to affirm our biggest fear, but I don't remember what it was and was struck with the worst feeling of grief I have ever felt. She said she would help us schedule an appointment with the metabolic specialists and we hung up. Jason and I still on the phone, we were both sobbing. 

The grief hit me like nothing I've ever felt before. I feel guilty for a lot of things I immediately thought and things which I continue to think about and have to tell myself not to.
Here are some of my million thoughts a day. 

-"I  certainly will not live if Noah can't"
-"I need to have another baby so that I have something to live for."
-"How can there really be a G-d??"
-"We can save him!!"
-"My title of "mother" is being taken away from me"
-"my time with my love bug has an expiration date"
-"If I get enough people to pray for us, we will be fine!"
-"Why me, why us, why Noah???"
-"It's hereditary, so it's my fault?"
-"Did I eat something bad during pregnancy? Is it my fault??"
-"Noah doesn't deserve this. He is innocent. Take me!!!"
-... "But if G-d takes me, I still don't have Noah. :( "

Our lives have been turned upside down. Jason and I hope and pray that G-d is testing us and our faith. We will not give up. Overall, we're hoping we have the DUMBEST neurologist on the planet and she is wrong (and we told her that!) 
We will do whatever it takes to find Noah some treatment, and pray multiple times a day for a miracle. He is our miracle and our son and the love of our lives and we cannot and will not lose this precious boy. 
I am thankful for our amazing family, without whom I would surely be locked in an asylum, and my friends for continuing to check in on us to let us know were in their thoughts. 
I was thankful today to read a prayer about healing the sick in the siddur at Shul, part of which said, because it is shabbos "... Because I cannot weep on the sabbath". I have had this in my head all day today and a day without crying has been like a tropical vacation. 
Jason and I, along with our family and friends have been doing a lot of research and have immediately changed Noah's diet. We have family performing long distance Reiki, family with connections at children's hospital giving us names of people here and around the world, family involved in clinical research, friends and family praying, Noah's teacher reaching out for prayer and already offering her bone marrow should she be a match :) and the list goes on. We're definitely blessed with support. 

Please continue to see Noah for the happy, sweet and beautiful boy he is and not the illness we hope and pray he does not have. 

Refuah shleimah- prayer for the sick:

May the One who was a source of blessing for our ancestors, bring blessings of healing upon Zvi Aron Ben Sura Tamara and Aryeh [Noah], a healing of body and a healing of spirit. May those in whose care they are entrusted, be gifted with wisdom and skill, and those who surround them, be gifted with love and trust, openness and support in their care. And may they be healed along with all those who are in need. Blessed are You, Source of healing. Amen.

Please keep our little bear in your prayers.