Back to where it all started – Day one
I woke this morning feeling refreshed, not sure how due to getting home so late from Adam Sandler last night, but I know I was ready for this trip. I was also emotional but there is just a lot of PTSD that comes with these trips.

Saying goodbye to Eric was probably the hardest today. He hugged me good and said “this is it” I know what he meant and so did he, but somewhere in between, there was an unspoken feeling, so much more that could have been probably been said, but he knew and it stayed on my heart. Leaving him brought back to me, many memories of all the times that I left him and Evan to come to Italy. As their life at 13 and 11 was suddenly thrust into being forced to take more care of themselves, and miss their mom being home at such pivotal times in their life. Unfortunately I can’t go back and change any of that, but as he hugged me today I could see the young man that knew I didn’t want to go, the young man that saw that we all suffered these last ten years and a young man that is now a more loving, caring and compassionate adult that I am so grateful for.

We got in the car and we were on our way. We had the most awesome driver to take us to Newark and as we talked (more me) ha ha we learned what an incredibly tough life he had after losing his mom at 6. Herman was his name and he shared many good life quips and stories. His words were a another simple reminder of how much we all have suffered or are suffering, but as he said,we must keep our head straight and focused. It was a 2 hour ride that felt like a half hour thanks to Herman.




We arrived at the airport and of course my bag weighed too much…they call me the “overstuffer” so after I managed to get them even we walked to security. Now we should have had help set up from Italy through the airport but it didn’t happen unfortunately. Yet, some incredible woman saw us with the kids in Eli’s chair and immediately pushed us to the front of an extremely long line, I silently thanked God with a tear in my eye.
We made it through security until they picked Ei to do a full body pat down on along with his chair.


As annoyed as I was at the time it was taking, Eli just sat there learning new stretches to get in different positions for them, and I couldn’t help but laugh.
We had plenty of time to eat before our flight, so we found a pizza place, go figure since I’m sure we will have enough these next two weeks.

We ate, and went to our gate. Let’s just say I felt the Karen in me starting to come out as I noticed there was no place to sit and wait at the gate, as they have all these tables now, but nowhere near enough chairs, then as we were waiting to board, the airport was struck by lightening, which pushed things back a good hour, but we finally boarded. Karen continued to try to come out but thankfully she didn’t make it. We sat on the tarmac for about two hours waiting to leave and since I’m not drinking, we’ll let’s just say I really wanted one.

Enter Karen
After a rough hour or so in the air from the storm and bad turbulence, things settled down and we were on a good pace to get to Milan.
Half way though the flight Eli’s legs were cramping, and not feeling good. The only thing I normally do for this is to take off his braces; which is not easy on a pretty full plane. One of the stewardesses saw me in the aisle struggling, so she came over and asked if I needed help? I explained that everything was good and he just needed some space. She decided to take matters into her own hands and find two seats up further for Hut and Ella so Eli was able to stretch his legs. I was in awe of her kindness, but she was more than happy to help however she could. Off came the braces and as Ella and Hut moved up to get comfortable, Eli did as well. It was a beautiful gesture to help him become more comfortable and I appreciated the kindness so much.

After landing, we had help here thankfully and quickly went through customs then right out to get in the van.



After an hour ride, we made it right back to where this journey began 10 years ago at the NH Milano in Segrate. We got our bags out and after five trips (the bags rode separately because the elevators are so small) we were checking in. We then walked to our room, and as much as I had hoped for one that we had when we lived here prior, it seemed to be impossible due to a fashion expo going on in Milan right now as everything is booked. I have to admit, our room may not have the lake to overlook and it might not be as large as before, BUT it was the room that one of my most favorite family lived in when they were here getting their daughter treated for MLD. They also had a son Omar who suffered from MLD and I fell in love with him on day one! He in now 19 or around that, and I used to say , and truly believe that he is only still here because of the love from his family. One of the greatest families ever, so I feel truly blessed to be in this room and thinking of them!!!

As I unpacked, my wonderful friend Erica told me she would run me to the store since nothing in our little Segrate is open today to walk to. As I waited for her I walked and fed the fish and turtles, I soaked in the sun and just felt such gratitude for it all. It’s not easy, but damn have we been so blessed along the way. Not even here two hours and here was Erica running me to the store so get some things for the apartment.


After arriving home, I walked in to a few sleeping people. It made me so nervous about the evening as I tried so hard to stay awake. Suddenly it was me nodding off, not knowing where I was and answering Ella’s questions so randomly that Eli and Ella’s laugh pulled me completely from any slumber I was about to enjoy and off to dinner it was.


After feeling the fish, we ended the evening with some funny Italian tv show.
As I write this, everyone is asleep and I pray it’s going to last through the night, as the first couple of nights are hard getting acclimated.
So cheers to day one down!!! These two are rockstars!!!!!
Thank you for the prayers!! We are so grateful!!!
~ by Rebecca on April 16, 2023.
Posted in Back to life and living, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
Tags: acceptance, back where it all started, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, finding the good, gene therapy, God, journey, joy, life, listening, Love, memories, metachromatic leukodystrophy, Miracle, MLD, never give up, PTSD, sorrow, special needs, strength, tears, warriors