Fear Not

As last night came to an end I was lying in bed with Eli and I was asking him how his boo boo felt where they took the aspiration (his hip pelvic area) anyway…he was saying he felt fine but did not want to go back to the hospital anymore for any more needles or tests. After that came a slow quiet weep and it was a true cry…a cry that would make any parent cry right along with them. As I tried to hide my face I really couldn’t and when he was my tears he just hugged me. At that point I told him I would be right next to him through all of this and that I was so proud of him. I told him so many people at home are so proud of him and are praying for him to be as brave as he can be. That put a big smile on his face! I have to say, at 7 & ½ I know he understands but I don’t know how much so I feel there is a fine line with what I can say. This is where you just trust your job as a parent and try to do the best you know how at that particular moment! As my dad would always say “kid’s don’t come with instructions” and situations like this definitely don’t come with instructions either. I have always said that my kids will be in therapy for something when they get older but I know it will never be over wondering if they were loved!

As you can imagine there have been a lot of emotions leading up to this trip to Milan. I am trying so hard to just take one moment at a time but sometimes life just gets the best of you and sucks you in to all the emotions that we are made of. We had a Buona Fortuna party for Eli & Ella to say good luck …it was a wonderful party with many people showing up to wish us well. The kids really did not ask too many questions about why we were going for so long they were just happy that they were done school for the year!! Ahhh…what  a nice feeling to be that excited an innocent. I remember a few times breaking down for a minute of two at the party…maybe seeing the kids with one of their friends from school, the photo booth pictures and sometimes just looking at Eric and Evan…noticing how tall they were or looking at the smile on their face. Would they be much taller when I get home?? Would that smile remain for the time I am gone and how can I help them make the best of this situation….so many thoughts running through my head. As we all know the anticipation of life and things we fear is normally much worse in our mind than the actual thing. I had to keep focused on that!

So…now the trip…the day and moment we have been waiting for…we have waited 7 months for the possibility of having hope…we have asked thousands to pray and believe with us that this dream would come true…here it is now standing right in front of us…how exciting!!!! Yes I am scared to death and don’t know how it will all work but I am hopeful that I will go home with 2 children that now have a shot at life! When you think about it, it is NUTS!!! A clinical trial where 9 children have gone before (and I thank them all) in another country…this is stuff you read about not stuff that happens to you. Well, it is happening and I am embracing it as best as I can.

It was much more comfortable arriving at the airport this time although the passport line was brutal and the kids were wiped out!!! Hut rented a car this time (crazy us) so after the long wait we found our car (9 person van) and headed out. OMG thank God for GPS even though we had no idea really what we were doing. After getting lost only a couple of times we found our new “home”. Bringing 7 bags up was not the easiest especially in an elevator that fits 4 people maximum! Before we could bring our bags up we had to see our room. Let’s just say that there was no way it would work. It was a room with two floors and a small spiral staircase to go from one to another. It was small enough that no luggage would fit. So…I said we need another room and magically they found a one bedroom apartment for us. They brought two more single beds up and we were now in our new home!

After a few hours of unpacking we decided to venture out. We need to fill our microwave sized refrigerator with whatever we could find that they would like. Thank goodness I packed a whole suitcase of food for them that I knew they would enjoy! In the next two days we found our way around a bit more, were shown the local mall and grocery store thanks to another gene therapy family who was here getting a check up (Thanks Kim) and slowly started to get used to the time change! UGH!! The first three nights the kids did not fall asleep until after midnight!

Monday came quickly and thank goodness our first appointment was not until 11:30. As we did not know what to expect the first day we were just leaving our minds open to whatever. We met with Dr. Biffi and her colleagues (there were many) and it was a great meeting. I think they were very happy to see Eli doing so well! As Hut and I were going over treatment Dr. Biffi and the neurologist took Eli for a quick motor skill check to see how he fared from last visit. He was not gone long when he came back and they said he did great! No changes and he actually improved one point on one of the tests! YAY!!! My heart was singing!!!! This was a good start to the trip! Tuesday was blood-work, EKG and chest X-ray for Eli. Yes Ella cried and even Eli did this time … but I look at it like they will never have to do that one particular thing again:))) Poor Ella did her testing with a fever…don’t know exactly what’s wrong but some kind of virus and cough…poor baby…thank goodness she was done on Tuesday. Eli went back Wed for his bone marrow aspiration and he was not happy with not being able to eat but Hut took him and said he did just fine. I forgot, Tuesday he also had his appointment with his psychologist and he did great! NO CHANGES!!!! YAY!!!! Another good thing!!

So as I write this it is Thursday morning in Milan and we have the day off…tomorrow too. It is Holiday here in Milan and a perfect time as Evan & Mom-Mom just landed and we can now spend the day together…tomorrow too! I need to figure out how to do all of this on my own as Hut is leaving on Sunday. I don’t want to keep the car as this place scares me to drive. All the cars are tiny tiny and ours looks like a monster. (as we found out the first day when Hut swiped the side molding off of the car by swiping a pole) At least it is something I can still laugh about. (not him though).There are really no lights just round abouts (like Jersey circles) and the drivers are a bit on the crazy side! We will venture out to make sure I have the metro down pat and hopefully get the internet set up so I have it when we are in the hospital. (The important things;)

Most importantly I feel good… I feel good knowing we are in the best possible place for us right now and I promised myself that despite any negative feelings I will make this as happy as a time as I can. Lots of goofy dancing, games in the hall, races to the laundry, and plenty of snuggle time:)

Off to the mall where you pay for your cart and grocery store where you pay for your bags (all the little things we are learning about Milan) Going to try to show Evan & Mom-mom around today.

As I finish writing I am feeling grateful and happy today so I am enjoying the moment. Realizing how far we have come on this journey so far and being grateful that the Doctor from Dupont was so grave with her diagnosis. As Hut said if she did not make us think that it was so bad we might not have fought so hard and quickly for where we needed to be! Yes…its true… sometimes when you are going through a situation and it seems so dark and you don’t understand why a particular thing has happened or is happening people say maybe someday you will see the reason…I can now see that God only allows us to see what truly was meant to come from a situation when we can step back and look at it without the emotion that we have when we are going through it.

~ by Rebecca on April 25, 2013.

Posted in Diagnosed