Alec  had to get eye exams just about every 3 months , ever since he was a baby.  His opthalmologist was Dr. Dagi at Children's Hospital, she was always his Dr. We saw her when we were admitted in Children's, I remember waiting forever in the waiting area, Keith and I taking turns snuggling Alec, wondering why in the world were we sitting here having to do this.
The Doctors needed to check his optic nerve, because the tumor was on his optic nerve, and to try to check his vision. We first met Sarah, not sure her title, but she tested Alec with the stripes on cards to see if he looked at them. Then we met Dr. Dagi, she let us know with the look in her eyes and her words that she was so  heartbroken for us.  Then she had us hold Alec so she could look , it was so painful for us to make Alec go through this, he was wailing. I'm not sure if it was at this visit or the next few, but she told us there was no color to his optic nerve, we were not sure what that meant, but knew it was not good. However as long as we had Alec, his eyesight or lack of did not matter. We of course were sad for him.  There was a time when we were playing with Alec at home,  and we noticed that he did not respond to anything we put in front of him, he did not look. We knew then, that he didn't see, he was blind. Which is probably what no color on the optic nerve meant.  As time went by , we started to notice that Alec was looking at things, and seeing them. On his next visit with Dr. Dagi, she said some color had returned to his optic nerve, which I believe she said just doesn't happen. She was very happy to share this news with us. We could tell that she knew she was witnessing a miracle.
 
Alec was legally blind, but he could see. The amount of vision he had was so minimal, but one would never know that, even we forgot how little vision he had because  he made it look like he could see with perfect eyesight. He got around pretty well and he would see things that would shock us--we always thought his vision was getting better.
 
Alec never liked going to have his eyes checked, he hated the drops or spray they put in, it would always be the first thing he asked when we got to an appointment, "Do I have to have drops". When they said no, he didn't need them, he was so happy and relieved. When they said yes, it was tough, he didn't like it, but he did it so bravely.
 He did love to see Sarah, and would ask for her every time, and get so excited to have her check his visual acuity, he loved to talk to her and ask her questions. She was always so kind and gentle and Al always made her smile and laugh.
 But the main reason that Alec was willing to go the eye Dr. was to hear Dr. Dagi call him, "Sweet Potata" , she has always called him that, from infant all the way through. Alec love,loved, loved it;  he just sat there waiting for her to call him Sweet Potata. She'd say " Hi Sweet Potata", and Alec would get the biggest smile on his face, that's all he needed.  She did not even realize this, I think I had to tell her every time how much he loved it. She said she was from the south and that was a term of endearment they use.
 
We always had our routine, get to the eye appt. a few minutes early, so Al could play with the toys, see Sarah (hopefully), get drops (unfortunately), eat lunch while we wait for Dr. Dagi, get eyes checked, get called Sweet Potata,  stop at dollar tree for a surprise, then pick up Taa (Cassidy) from school.
 
I just heard a lady  (on the Nate Berkus show)  call Nate a "Sweet Potata". I had never heard anyone else call someone that except Dr. Dagi to Al.
(neither did Nate, he asked her what it meant and she said it's like Cutie Pie) 

At the beginning of last year, I would search online with my questions, desperate pleas, anything to find any comfort,( I still do). And I found this story on  a website which was created by a dad for his baby boy who was in Heaven.

This story is  all  Alec:

  Not long ago in Heaven there was a little soul who took wonder in observing the world.  He especially enjoyed the love he saw there and often expressed this joy with God.  One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked,
"Why do bad things happen; why is there suffering in the world?"  God paused, for a moment and replied,  "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." God replied, "Have you not noticed the goodness and love that is the offspring of that suffering?  Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed.  I created everyone with endless love in their heart,  but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this- it is the greatest miracle of all. vMany souls have bravely chosen to go into the world and suffer- unlock this love- to create this miracle- for the good of all humanity." Just then the little soul got a wonderful idea and could hardly contain himself. with wings fluttering, bouncing up and down, the little soul excitedly replied, " I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are the most special and will care for you and suffer along with you, far beyond the others. They have already chosen a name for you. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." At that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. Many people dropped their differences and came together to show their love. priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family drew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever.  It was good. The world was a better place. The miracle had happened. god was pleased.

This is what Alec was all about--LOVE

I went back to this Dad'  website a few months ago and  saw that  the date his son went to Heaven was on October 23.  I did not see this the first time I found it. 
 

One day while we were at the Jimmy Fund clinic,  we got Alec a blueberry muffin from the kitchen area. It was a pre-wrapped kind. He asked what kind of muffin it was , so we told him the maker was "Otis Spunkmayer".
  Al loved this muffin and he loved the name even more. Every time we were at the clinic he would bring me into the kitchen and ask for an Otis Spunkmayer muffin. He would get very upset if there were none left,  so that became our first stop before check in, he needed that muffin, and we had to make sure he got it.  He then made up a song for the muffin that we all would sing together, here it is;

"Otis ,Otis, Splunkis, Splunkis, Mayer, Mayer, Mayer."

Papa loved to hear Al talk about Otis Spunkmayer and he would share this story with every one. It gave him a good laugh every time.
I think Al let everyone at the clinic and the  "H"  (hospital)  know  about the Otis Spunkmayer muffins and how much he loved them.
 (it was a disappointment  for all of us if we could not get one, since it made Al's day--it was always the little things that made Al so happy)

Cassidy has come home from school and said that a paper they read was about "Otis College", or it said  "Otis"  in her book.   We see  "Otis" all the time.  In elevators, some are made by Otis, A town named Otis.  I just saw it in an e-mail,   Otis Street.  These are all signs for us from Al.

Since today is the 23 rd of May and May is Brain Tumor awareness Month, I  hoped everyone could donate $23.00 for pediatric brain tumor research in Alec's name,  (or whatever you can afford). This picture  is from when Alec was chosen by his Doctors, Nurse Practitioners, and Nurses at the Jimmy Fund to be an ambassador to raise funds for Pediatric Brain Tumor Research, and it was hung in Stop and Shop. ( Stop and Shop is a huge supporter and has given and raised so much money to  fund research).  Alec had a blast at his photo shoot , he had the photographers  juggling for him and he brought such joy to them.  Through Stop and Shop, we were also invited to attend a luncheon at Fenway and a Red Sox game, Alec was not interested so he lounged on the comfy chairs in the box with Me and Keith taking turns hanging with him and watching the game with Cassidy.  We didn't know this prior, but we would get to be with Christine ,(Alec's very special and amazing Nurse Practitioner) and her husband ,
and Dr. Kieran (Alec's very special and  amazing Doctor) and his wife and 3 kids.  I was so shocked, you mean this amazing Dr. who is always at the clinic and hospital and traveling all over the world fighting for Alec and all these beautiful children has a family. It was so touching to me, the sacrifice he makes everyday with his own family to help ours.   I went over to  Dr. Kieran's wife to say thank you with all of my heart for the sacrifice she makes,  and their children make with  her husband and with their father. I just had to do this. We did not know he had a family at home, it was a very humbling and touching experience. So if you can support the work he does, his passion to help these beautiful children, we would truly appreciate it.

  I have been thinking that there is a Green Ribbon with Alec's name on it for raising awareness and funding for Pediatric Brain Tumors. 
(The grey ribbon is for brain tumor awareness).

Here is a pic of  Dr. Kieran and Alec , and a pic of Cassidy and Alec and Funshine Bear at the Red Sox game.

Donations can be made to:
Pediatric Brain Tumor Clinical and Research Fund
c/o Dr. Kieran
44  Binney St.
SW 331
Boston, MA.
                02115

Ed is an older man who volunteers at the clinic in the playroom. Ed has been there since Alec became a patient (and long before that). He is so sweet and caring, and Alec (and allof us)   love him.  Ed is tall and wears fitted khaki's with a belt and a button down shirt tucked in. We did not give much thought about Ed's clothing until one day at home when Alec pulled his pants up high to his chest ( like Steve Urkel) and said,
"Look, I look like Ed".   We burst out laughing , because we realized Alec could see that Ed wears his pants up high on his waist. Ever since that day Alec would say ,
"Dad, wear your pants like Ed",  and Keith would pull his pants way up mid belly and walk around. Alec and Cassidy loved this and would just crack up and get the giggles and be so silly.  Alec would even just come up to us and pull our pants up and say, "Like Ed".  Cassidy loved doing it for Alec too. And I joined in the "Ed"  fun too. Poor Ed , he doesn't know any of this.
Alec would say to Keith and I at the clinic, right in front of  Ed,  "Look at Ed's pants".  Luckily Ed never got it, and we would try to distract Alec from pointing it out to him.
Cassidy and Keith still pull their pants up like Ed and it still makes us smile.