Wednesday, May 21, 2014


Tomorrow night is finally almost here, only waited 5 years to FINALLY BE IN THE 5TH GRADE GYM SHOW Yeah! Yesterday he got off the bus humming into the house, and said guess what we did today? I said "what?" Nothing but rehearsal for the gym show !!!!!!!!!!!!!! It was AWESOME!!!!!!!!!!!! but I am a little wheezy had to have my inhaler with the nurse, I don't think I can do the baseball game, (after me talking to him calmly that maybe tonight will better than the last game that every day every moment is different I would appreciate it if he tried) okay Mom I will:-) (He wound up making contact, catching balls and I think he said getting someone out)

This morning he said I will be riding a goat at the gym show tomorrow ...I asked "a real goat?" No mom a pretend one........I then asked what song will be playing when this happens and I believe this is what he said thought he said ESCAPE (in my head this week) but it was U2's 

Thursday, April 10, 2014

Where to begin, but I will always THANK GOD FOR MY MIRACLE

I need to do this, yet my brain heart and soul is like a volcano constantly erupting.  During my last post in 2012 it talks about loss and basic issues of relationship problems that we were going through, last summer my doctor said due to my right hand that I fell on in the summer of 2011, we needed to rule out HD (my mom's illness) before I could even consider filing for disability, the fact alone that I had to consider it was a hard one, that alone with marital issues and still loving and smiling and hugging my son when he gets off the bus each day, still balancing my family in PA driving into make that balance.  In December my face briefly started to feel funny around my mouth area when I talk.  The appt with the neurologist at Mass General was booking three months ahead and so with that knowledge stressful yet never ever believing it was HD,  The appt in January was basically with the neurologist, who saw signs and ordered the blood test right then, and we waited until March 19th for the results.  In January E admitted he had seen signs to the doctor yet only during an argument with me a year prior did this come out, but he was taking notes of my symptoms that he said were for the doctor.  As soon as we heard he believed I had it, and ordered the blood test, both of our worlds collided and we held hands so tight we hadn't held like that ever........the tightness of no, silently screaming, our son would be at risk if this was positive, our son who just in late 90's this same place said you aren't showing signs now live your life, don't be tested Live!  We at the time went through IVF this was a year before embryo testing was available, and at the time we were so full of love and life and dreams and our son or daughter would find the cure, and our child by then there will be a cure, I still don't regret My son, he is my blood in my veins and my heart beat reason for breathing every memory over the past twelve years is still in a big lump in my throat now......  We got the positive results back now three weeks ago, and I have still can not fathom this is real for me, the mom who loves her son so much for the life of dreams we created and love.   I still can't verbalize it to my family over the phone even, other than that first day, that 300 miles is killing me now but everyday with M is all I can think about.  My speech is slurred, I am 12 years into this already through the neurological part two years into the physical, which brings us back to the last post,  I have a small gait and my hand is horrible so one breath at a time...  For someone who loves her family so much I wouldn't wish this pain on anyone and share just to have other's use this maybe to know the reality, not for pity, but for continued love to those I loved and love my son the most and to just be there for him he is now at the preteen age and I just want my son's happiness health and a CURE........

Friday, September 21, 2012


Well, this year has been a bad one for us in many way's.  Matthew really learned loss this year, more than when he was 3 visiting Grandma P.  This year started New Year's weekend with the loss of his Uncle, his sweet cousin's Daddy, and he witnessed the pain in a family expressing emotion over the loss of that loved one. He saw his other cousins express themselves with poems and prayers and witnessed that expression. 

The next weekend, he witnessed me in pain over the loss of my Uncle J. who would be buried in PA, and he said I can't do another funeral's too sad...I went myself to be with my father during the loss of his brother.

The following few months he witnessed loss in me again, of my Aunt L. in NJ, who was blessed to live to her 90's..and I couldn't make the trip due to him in school that week, but loss in me again he witnessed..

Last year around Labor Day, a flood hit the Susquehanna river in PA right where all of my family on both sides pretty much live.  Within the same blocks, I have both sides of my family next door neighbors to each other, or a few streets away, or two towns away but in proximity to this river and what it did, they were all hit.  Some worse than others.  My Aunt Sissy, who was my mom's last living sibling, her older sister and my alli in life, I have so many wonderful memories with her, regardless due to the flood for her safety, she was put in a nursing home and eventually passed away this summer.  Matthew loved her, and he again witnessed this pain again being far away, but this time the service was more a celebration of her life, so he joined me in that moment.  He is my little rock..and at the same time, we made memories.  Staying at Grandpa's house as usual, but went on day trips or visited his cousin's, my nieces.  We even fit in the drive-in's with my brother J, just because we only had a week, and I believe in letting him be 9.  I believe in making those memories, even mixed with sad ones..He learned about butterflies being a sign from a loved one that passed, he found one along a creek, among others that week, and to me he was learning life, good bad, and moments of smiling.

In August, Grandpa had a stroke.  He witnessed Mommy again having absolutely no trouble other than shaking from the shock of it, get in that car and head to PA.  His Dad took vacation time, during this last week of summer to stay with him, and he again witnessed this time over the phone, mommy going through loss, despair, trying sometimes to sound upbeat for that first week he was in the ICU, not knowing what is happening, not knowing what will happen, or the future, shaking still.. He adores his Grandpa, but this time, not knowing what is happening, we thought it best for him to stay here and be a child, doing things that he loves such as tubing, fishing, going to the beach.  My father is now paralyzed on his right side, and he is right handed, since that first week he has been in rehab, and he can walk with the help of therapists, but the rest has not come back.  My father is a very active father, man, Grandpa and all of this change, is something that is hard for me to deal with let alone my 9 year old son.  We pray everyday for him, we have pictures around the house showing memories of how many more memories we want with him. 

Labor Day weekend, Matthew and I had another huge loss, my sweet cousin Donnie.  He was in a hit and run accident in PA, while on a motorcycle, him and his girlfriend.  If there are soul mates for cousin's Donnie was it, he was more like my brother the past few years through Facebook we connected, on more than one level, including music and love of life, memories and wishing happiness for the other.  He was someone I could count on, and Matthew loved him.  We went with Donnie last summer to this place with waterfalls, and just a great summer adventure, he also took Matthew kayaking and was a great mentor to him.  Matthew would write on his wall telling him he rocked..

So all of these traumatic events, alone by themselves add up to one tough year for my son.  And we both have learned that the distance really hits the worst while loving those 300 miles away, especially at times of loss and need. 

There is alot more pain to this story, but I out of respect for my son, will not post about it...he has had a tough year...and all I have control over is loving him, and being there for him.  That will never change.

Thursday, September 20, 2012


Well my now 4th grader, yesterday I said, "Remember my blog?"  He didn' I opened it up and showed him... and he thought me having a website all about him, was cool...........

So being that my biggest fan in my life, is okay with this told him that not only on facebook will I share with the world my love for him, but here...

He signed up for saxophone in music class this year.  He is so excited and thinks it is so cool to take the bus with his instrument.  He asked me the other day if I was ever in band, and I explained that when we were in elementry school there was no instruments, but in middle school I took flute and violin and in high school I was on the dance team that went out at half time with the band, so I couldn't do both. 

This morning, he woke me up for school, so excited that today was music day!! He went to the bus 10 minutes earlier, and would have went 30 minutes earlier if I let him...

Grandpa had a stroke a few weeks ago, so there has been alot of "stuff" going on lately for this little 9 year old to deal with and being far away, and watching his mom struggle with it all has been hard on him.

For now, we will take the good moments of music days!

Wednesday, September 19, 2012



one thing I can say with affirmation is that I'M STILL BLESSED TO BE MATTHEWS MOM

I'm still Mama Swan because to me swan's love is forever...and for that I WILL ALWAYS BE BLESSED..