January 16, 2009                   2009!

I'm back......

I once said I will never stop this website, and I won't, it might just take me a little longer some months to update than others! As of today this website has seen 67, 991 hits...

I will provide a brief summary of the summer and fall:

Summer: July/August:

This past summer brought a new job, one was I was not expecting, but a job I always wanted. I accepted a job as a Clinical Educator for the Operating Room at the hospital I work at. It was a new position and I've always wanted to teach surgery so I was excited for the challenge. It brought with it a new bought of challenges. Starting a new job is always difficult. I knew half the nurses and half the surgeons from years before when we had worked together, however time has a funny way of playing tricks on people. I had the well meaning surgeon come up and ask me "how is your son, the one that was sick?" not knowing Christopher had died. I had the new coworkers who asked me "how many children do you have?" and had to answer that question. I have the three pictures of smiling babies on my desk and have to explain "I have one in heaven, and two on earth. My oldest passed away and he sent down his brother and sister." Each time it's a sigh, and a little turn of the knife. Starting a new job was exciting, exhausting and painful at the same time.

This summer I got mad. I mean pissed off, furious mad at God. I was sitting in church one day, looking at Christopher's cross, got furious and walked out. We talk about "miracles" that God does, where was mine??? I want him back.  As my minister said, "I've waited years for you to be angry, it's about time!" I am lucky and blessed enough to have friends in my life that knew I was spiraling in my sadness and my pain. They contacted my husband and it was decided it was time for me to see a Pastoral Counselor. I'm not ashamed to admit it. In order to be strong in life, you must realize when you are weak and there are situations beyond one's control when we often need help.  I am luckily enough to have friends to kick me in the but and come to that realization. It is my responsibility to be the "healthiest" mom physically and mentally to ALL of my children and my husband. As the year went on a close friend was diagnosed with breast cancer. I stopped being mad. I can't help her if I'm mad, anger takes things away from us and doesn't let us give what we need to in order to help others.

 

September:

Kindergarten! Virginia starts kindergarten the day after Labor Day. It was a day I had been dreading, fearing for years. Most mothers dread Kindergarten because they are having to send their babies off to school on the big yellow bus. They don't want them to take those first few steps to freedom. I want that, I would give my arm for that. I want to send him off on that bus. I want to buy that Snoopy lunch box and pin a little corner of his security blanket in his pocket to help him get through the day. I want that because that means he would be here. He would be growing up, I would actually get to see him get on the school bus, I would actually get to see him grow up. How incredibly wonderful and blessed I would be.

So we left. We went to Ocean City. We had a great room with an extra large porch (which I knew Christopher fixed up) and we drove home in the middle of the night, with Andrew projectile vomiting, to beat the hurricane. As a surprise Friends from church collected a backpack in it with school supplies to give to a child that needed one in Christopher's honor. Katie put a picture in the backpack for some little boy out there that's getting Christopher's backpack.

There is nothing else to say about the sadness of Kindergarten.......

 

Fall: Oct/Nov:

October: In October Andrew decided to take a little trip to the emergency room. I received a "911" page from daycare at work. He was jumping up and down on blocks and went flying into a corner of a wall. He cracked his head open (literally), blood spilled all over the toddler room, and they had to call the rescue squad to take him to the ER (even though he's at a hospital based daycare, he had to take an ambulance ride to go across the parking lot). He ended up with 9 sutures down to his skull, on his forehead about an inch long, down to his eye. The sutures didn't heal well and I ended up removing them and he is now seeing a plastic surgeon to avoid surgery. The incident about killed me.

In the ER we had to hold him down onto a papoose board while they sewed his head up. He was screaming and hysterical, and this little incident smacked me back in time again to another blond headed little boy who I use to have to hold down for procedures.  Andrew looks so much like his brother, and the only thing I could see in my head was the last time Christopher got stitches. We were in the PICU, and he had dehisced from surgery  and his abdomen was open to his liver. I could see my child's liver. I started screaming for a skin stapler and Christopher was rushed back into surgery.

Andrew was fine after the stitches, getting a piece of pizza and falling down the steps the next night from tripping on his blanket, but for weeks I was a mess. As my husband told me, and he was right, "this was a little boy thing, and not our first trip to the ER for stitches".  I couldn't separate Hopkins from reality again - all roads lead back to Hopkins. I finally came to understand kids really do get stitches and it's ok. Not all stitches pop open to the liver...

Andrew popped his head open one day before the 5 year anniversary of Christopher's diagnosis.

December:

After 6 LONG years, 3 children, and well we all know the rest, I finished my master's degree! I took my last class at Mason this semester, helped teach a class at Mason and finished in December!!! This degree was so bitter sweet. I had started it when I was pregnant with Christopher, and the stress of it had been a constant in my life. It had always held me to him.

People asked me how it felt to be finished, and I just say at the end of the day I did this for my kids and my husband. I did this for Joe, my best friend and cheerleader who earns half this degree. I want to always be able to take care of him as he takes care of us.

For Katie and Andrew:

One day in life, and it will inevitably come, they will find an obstacle in life they feel they can't surpass. They will feel the mountain is too hard to climb, the distance is too far and the challenge seems impossible. When they do, I want them to remember this. I want them to know during the hardest time of their mother's life she got this degree for them. I did this to show them their is nothing they can't do in their life, and no obstacle is too high it can't be overcome. I want them to remember I would feed them at 3am with one hand and type with the other to finish this degree. I did this for them. I want them to know their is nothing in life they can't overcome and their mama did this to show them the world is theirs...

For Christopher:

Oh, Christopher, my sweet love who I dream about at night. Whose image pops in front of my face a hundred times a day. I hope I made you proud. I hope one day I can help all children with the knowledge I've gained. I write this with tears in my eyes. What a dichotomy this degree was. The first paper I wrote in grad school, when I was pregnant with Christopher was on stem cell research, what a foreboding predication of what my life was to become.

Oh Christopher people have moved on, even family has forgotten you, but you will always be so alive to me in my heart. When we put our Christmas tree up every year, we go put yours out. We will always love you......

January 2009

New years, always the hardest holiday of the year.... I feel another year away from him. All parents of bereaved children feel their children will be forgetten. New year's always makes it seem another year has gone by, and their greatest fear is  this will be the year when someone forgets their child. Please, don't ever forget them....

 

In Conclusion:

Lately Katie has been pointing to the Median Sternotomy scar that sits on my chest. (It's a long "zipper" scar that goes half way to my neck from heart surgery). She points to it and goes "Wat dat mama?" I tell her since it looks like a zipper the doctor's just unzipped mama, fixed her up, and zipped her back up! If only it were truly that easy to heal a broken heart...

This poem was read by Maria Shriver at  journalist Tim Russet's funeral this summer. I thought it was appropriate for closing today with this poem:

 

Wednesday June 11, 2008            Angel Day 4 years later

                We love you                 

June 2, 2008

Addictions

 We all have addictions in life. For some it’s booze, other’s it’s drugs or cigarettes. I have addictions my husband has accepted I will never get treatment for and has learned to accept. Those addictions are:

1. Sex and the City
2. the makeup counter at Nordstroms.

 So, how do these addictions play into my everyday life?

1. Sex and the City:

 As the entire world is now aware, the movie is finally here! I think I have seen every episode a zillion times. I think what it has done for fashion, careers and  the independent woman is timeless – however that is another entry.   While the rest of my friends were having flirtini parties and watching the series, I was in the hospital with Christopher. Joe would tape it on Sunday night, and bring it to me on Monday.  When the series finale known ‘round the world appeared Christopher was in the PICU. I don’t know how, but somehow on the old crappy tv in the PICU we were able to tap into HBO and watch the series finale. I think it was a gift from God, because we could never get HBO back again.

Now I know it is just a movie, a silly show so unrealistic and so far away from my life (However if the Manalo Blanick people ever read this, I'm a size 6 and would like a pair of black patent leather Mary Janes and I would LOVE to meet Sarah Jessica Parker).  Everyone needs their little escape from reality, no matter how silly. I think with as hard as we all work in life we are allowed one silly thing to make us smile and laugh .So here we are, 4 years later and the movies out this week. And here my family is, 4 years later and next week is the anniversary of Christopher’s death. Seeing all the advertisements on tv about the “opening premiere” of the movie, couldn’t help but jog memories of the “closing curtain” on my life 4 years. Both simultaneous events. Again, another thing in life that causes a flashback.

 

2. Makeup Counter at Nordstroms:
   I am a sucker for the latest blush, eyeshadow or mascara and let’s now even go down the “free gift” with purchase route because I am so there! So, after a frustrating week at my job last week, I went to feed my addiction. I bought that lipstick that made me “pop” that makeup brush to make sure the blush was smooth and the new foundation that just went Perfect with my complexion. (Of course everything is in my car to be returned tomorrow. After I come out of my perfume, lipstick and free gift haze, I realize I don’t’ need the junk or can’t afford it, and it all goes back). As I was sitting in that makeup chair having the “great new eyeshadow” applied again, Boom! I was back at Hopkins!

When we were living at the Children’s place the Lions Club would take mom’s out for a makeover day whose children were living there. They picked up two moms every month, took us to the makeup counter at Hecht’s let us get a makeover and gave us a $50 gift certificate to get something for ourselves. It was such an incredible gesture, it made us feel “normal” again, if only for an hour or two. (Oh course as soon as I got back Christopher was fluid overloaded, and  looked like the Stay Puff Marshmallow man. I purposely took my fist, slammed and broke his IV pump, opened the IV door so it would all stop  because they wouldn’t stop giving him fluids, and the day spiraled back to the PICU).

 So here I am this week, anticipating yet another angel day, with addictions in tow and they all cause flashbacks. The flashbacks aren’t as bad anymore, but they still come. The elevator door opened at work the other day and I felt like I was walking out of the door into the PICU, seeing our good friend Baby Brady being rolled down the fall from his liver transplant.

 Some of my closest friends want me to go with them to Blacksburg this weekend (home of the best school in the world – VA tech). I don’t want to go, I feel like in my head I am fighting you and kicking them tooth and nail and digging my claws in, like when I tell one of the kids something and they scream “no” and I  pick their little buts up and drag them down the hall. When Nick (dog) will be walking and just stop and not move (he’s kind of a dumb dog anyway) and he sinks his claws in and I have to drag him up.

  I instead want to curl up in a ball and die. I want to go under the covers and live their for weeks and weeks. I want to be sad, I want to scream at the world. And yet, my closest friends are making me go on living and I am so blessed for that. How lucky I am to have people to continually pick me up, make me go on living. And so my spiral of deep dark sadness has begun with Christopher’s death just a week a way.  And so this year I am fighting. I am fighting the  sadness cloud. I am trying to fight the sadness, and realize how lucky I am to have had  Christopher for the 13 months he was here, and I am lucky. But I am tired of fighting, it’s what I have done my whole life, but still, I try to fight. I  may be a little weaker now, but I try, I won’t give up I am a mother, a wife, a co-worker, a nurse, a friend, I really don’t have the  option NOT to fight.

Postlude to an Addiction:

Four girlfriends sat in a movie theater in Blacksburg, Va watching the Sex and the City movie about friendship. They spent the weekend looking for the "Elmo loves Va Tech t-shirt" for the kids and drank bad beer and ate cheep pizza. They visited the April 2007 Memorial and were just together. They taught me it's ok, he will never be "gone" and it made Angel Day just a little bit easier on the soul.  They gave me a blue butterfly, and for the first time in many years, I allowed myself to breath. Thank you my Homies...................

 

 

Monday May 26, 2008                          Memorial Day

It's Memorial Day Weekend and a piece of me is at Hopkins. I'm standing with my back against the wall, in Room  2 of the PICU. I am  watching as the doctors and nurses work valiantly to save Christopher's life after he crashed and they are trying to get him on the vent and there are about a zillion people in the room. I am standing week against the wall, ready to just pass out, but so strong because I have to remain strong for him, I'm sitting there telling the doctors to keep going, to do what they have to do because he is Christopher and he will make it. He's not like the other kids, he is so strong, and he is my son, and he WILL make it.

The last time he was conscious was Memorial Day weekend. His lungs were starting to have problems and he was on a machine called bi-pap (it's a type of oxygenation mask that sits on the face and blows oxygen in). The night before he crashed he was miserable with the bipap blowing oxygen into his lungs. He was covered by a blue bair hugger ( a type of warming blanket used in surgery to help the patient maintain normothermia) and he was so uncomfortable. When Joe and I left the PICU sometime around 1:00/1:30 am to try to find somewhere to sleep for a few hours he just whimpered from the machine. We turned around as we left the room and went over and kissed him several times. We patted his head and told him how much we loved him, and how everything was going to be ok, I remember just smiling and telling him what a brave boy he was. He was almost out of Hopkins, we were having him transferred to Fairfax  Hospital in a few days and he would get better there.....and than a few hours later we got the call he crashed. The last scene of him on the bi-pap and the bair hugger is one that haunts us everyday of our life. Neither one of us can ever forgive ourselves for not staying or trying to do something to make it better at that moment it time. We will never, ever forgive ourselves for this.

I have been doing "ok" in my grieving process lately (or at least I think I am). We finished his birthday by decorating his grave, and had so many phone calls, cards, e-mails, flowers, mementos. Thank you will never be able to describe how much it meant and truly touched our souls. I think this year was harder than the others. Being the big "5" he should be riding a bike, thinking about riding the big school bus this year, keeping Katie in line. Being 5 is such a "big boy" age. We bought a cake, sang Happy Birthday and I got Thomas the Train plates to eat on. We put toys on his grave, and donated toys to the hospital. The Life with Cancer Berveament  Group I attend has been incredible. I suggested every month we donate toys in honor of the child's birthday it would have been. So in April we donated toys to the peds oncology unit at Fairfax a 5 year old would have wanted.

Mother's Day - I always said the best mother's day gift I ever got was a clear chest x-ray from Christopher on my first and only mother's day with him. I  had a nice weekend, getting to see my parents and going out to dinner with my mom, one of my best friends and her mom in Richmond for a fun girls dinner. I got some pretty cool things on mother's day this year. A "candle" from Katie (really a baby food jar with tissue paper stuck to it and a votive candle inside. It would probably explode if we ever tried to light it because of all the glue on it). Andrew gave me a potholder with his little handprints on it, how I cherish these precious homemade gifts from my babies. So a clear chest x-ray, an explosive candle and a potholder, would more could a mother want?

This year Christopher gave me a special gift, one that I could never imagine. There has been another Hurler's mother who lost her son, who found me. She has kept in touch with me, picked me up when I needed it and given me courage I can be a survivor. For Christopher's birthday she made me a beautiful scarf with gold butterflies and the butterfly song I sang him. Around 3 pm on Sunday I started to get sad, the "crash" came. I should be getting three little hugs on mother's day. Joe and I always give each other a special card from Christopher on Holidays, but I was still a little melochanlcy...and than the call came.... My special Hurler's mom, who I had never talked to on the phone, called me. It was truly a godsend. I cried and cried. When I got off the phone Joe said "Did Christopher just call you for mother's day?" I said yes, he did, the day was finally complete.

The past 2 months my health hasn't been great. Flairs of asthma, which means steroids and more meds. I got a horrible infection in the bone behind my ear (mastoiditis) causing my neck and shoulder to go numb, which means more steroids, huge antibiotics and my heart to wack out on me. I've been having bouts of tachycardia again which means more tests, more meds, and more docs appointments. I was suppose to have walked in Race for the Cure on Mother's Day but was too sick from the steroids.  The heat this time of year kills me, so I am playing around with inhalers and meds and just taking it as it comes. My heart had been doing fine for a while, smooth sailing and no problems. I wonder if somehow the underlying stress and sadness between Christopher's birthday and death has caused problems I didn't realize.

This memorial day weekend I spent with another screaming child. One that was out of control and threw himself down every chance he got just to scream. Only this time it was the old childhood right of passage of teething - getting his incisors in. A "normal" memorial day for childhood.  And so as strong as I tend to be I feel myself starting the old spiral downward with Christopher's death approaching. The sadness cloud  of his death is slowly, slowly, trying to creep in over my sunshine, and at points it succeeds. 

Speaking of sunshine I use to sing "You are my sunshine" to Christopher at night when he was in the hospital. I'd lay with him in the crib and rub his little blond hair.  I taught it to Katie and now it's her favorite song... everyday is still a daily battle, the clouds are always there, ready to overtake the sunshine and cause my world to break in half again....

 

Thursday April 24, 2008                 **Entry 1, 11:30 am

Happy 5th Birthday Angel Christopher

We miss you so much!

 

The weeks leading up to a child's birthday are ones filled with excitement and anticipation. What type of party to have, what to put in the goodie bags, and what present to get to your child to smile and giggle with delight. However, for us, the weeks leading up to Christopher's birthday are filled with a sad anticipation, a sharp  pain that reminds us what we don't have and an empty hole that no matter how hard can't be filled.

I think about this website all the time. Whenever I sit down to write a child gets pink eye, a dog gets sick or something crashes. So I write my ideas down on scraps of paper and wait a few months till the house is quiet and I can write them down (like today). We almost lost our precious little Beagle, Bell. She was in and out of the doggie ICU since Feb. Long story short we took her to another vet that saved her life. We were devastated when Bell was sick, this was "Christopher's puppy" and the thought of loosing her crushed us. We fought and fought to keep her alive, much like we did Christopher those many months ago. The pain of nursing a loved one proved just crushing for Joe and I and all we could think of was every moment we spent Nursing Christopher back to health

I spent the beginning of the year angry. Not raging, or hostile, just angry and not understanding. I wanted my miracle. Nothing more, nothing less, I wanted my miracle. Now I know all children are a miracle, etc.., etc... but I wanted MY miracle, the one where the miracle baby survived, everybody else around us had one, why couldn't we. We know he may have been disabled (or maybe not) but who better to take care of a disabled special child than Joe and I. We know there would have been obstacles, but we would have been fine, especially us of all people . Everybody says "God does things for a reason" and I don't know if I believe that. Some days I do, some days I don't. I think Christopher getting sick and dying just happened. I use to try to rationalize  things by saying if I have to live in pain for the rest of my life so he doesn't have to, than so be it, I am fine. This still holds true, but I am tired, and I can't rationalize it anymore. I just simply don't understand.

I have looked at certain events in our life lately, and none of them would have happened if he lived.  Katie and Andrew would have been our, no matter what, they were just always meant to be ours, I always knew there were three little babies waiting for us. Howver, Joe wouldn't have had his own business, and I wouldn't be in grad school (not that i want to be there now anyway). It's the fork that divided in the road, and the path that we were forced to take. We would throw it away in a second to go back to the other fork that meant having Christopher.

Talking to Strangers

I find myself telling random people I have a child that died. Somehow in my mind I think they may be the "one". The magical one that can snap their fingers and bring him back.  Stranger: " Oh your baby died, well here, let me snap my fingers and let him reapper". I don't do this as much as I use to, and the words slip out before I know what I've said.

Example:

-Nice Metro lady who gave up her seat for Katie and I last week. I tell Metro lady " We're going downtown to the Smithsonian to see the butterfly exhibit, you see my son died and his symbol to us is the butterfly." Metro ladies mouth hangs open, Damn, I did it again, I told another random stranger my child died.

-Old College Roomate I ran into after 13 years at Rio Grande Mexican Restaurant with kids, First thing I say "We have another son, he died, he would have been 5". Why was this the first thing I said?

-Pulmonologist office last week:

Me:  "My asthma is horrible, my chest is so tight I can hardly breath, I'm a little stressed also, my son died he would have been 5 next week."

Pulmonologist: Starts Crying, "Oh my god, that is the saddest thing I have ever heard." So I give her a hug, rub her arm, and tell her it's ok. Could we please review my medical history again and decide what to do about the asthma. (After waiting for almost 2 hours to be seen, and having to console the dr. I feel I should have gotten my co-pay back.) :)

I think I am still "looking". Looking for that miracle, for him to still come home.  To find that one magical person that can make it all happen  and bring him home. I think at night how nice it would be to hold all three of my babies together, and I just sigh because I know it will never happen.

A Katie Sandwich

My favorite part of the entire day is picking the kids up from school. Nothing in the world beats the feeling of picking them up and having them come running across the classroom to leap into your arms and give you a kiss. It is the most precious kiss in the world. I often watch them before I pick them up, so they don't see me. As I was watching Katie on the "big playground" the other day I saw kids who were Christopher's classmates outside with her. I often tell her how lucky she is to be a "Katie Sandwich" to have a little brother and an angel big brother with her in the middle. It hit me than how cute it would have been if Christopher was alive and they were on the same playground. She and Andrew were on the "little playground" together and when she moved classrooms and went to the big playground she would have had another brother waiting there to play with her. How sad it made me to see Christopher's classmates running around after her, only he wasn't there to tackle his sister. Something just didn't seem right in that scenario, where was her big brother? He should be on the playground with her.

Katie's favorite song in the world in "Happy Birthday". Every day is somebody's birthday. It's usually blankie's birthday, or doll babies birthday, it depends on the mood of the day. But today is angel Christopher's birthday, Katie's "angel brother's" birthday. So for the last few days she has been singing "Happy Birthday Kist-pher", than going "he's up there mama, he's up there" as she points to the sky.

There is so much I ratiolozize out with them in regards to Christopher and the one thing I have come to peace is they never had to see him suffer. They never saw him vomit or loose his hair or watch him die. I have met so many parents who have the pain of their child that died, than the pain of the remaining siblings in mourning that child. Katie and Andrew will see the pictures, see the smiles and never have to know the horror he went through. When I told this new theory to Joe, he told me this was wonderful, however they never got to know him either. Once again, trying to find a rationalization.

Hopkins

I still think about the Horror of Hopkins all the time. The facility was truly hell on earth. I don't dream of ventilators or PICU smells as much as I use to, but it's still there. I can look back and see that first year after we lost him how we couldn't even get a breath out to talk without feeling like we were going to suffocate. That is gone, the pain is just now a constant numbing. I think about our friends, our doctors our nurses from Hopkins. I even google them to see if I can find them to see how they are doing, to still hold onto that connection. Our local Life with Cancer organization has started a Parent Bereavement Group and it is a wonderful thing. Once a month we come together, parents who lost a child. We celebrate our children's lives, we grieve their pain, and we give each other strength in knowing we are not alone and we will survive. This month I would have brought cupcakes into Christopher's class to celebrate his birthday, so instead I brought cupcakes in to the Parent Bereavement group to celebrate his life.

 

....The day is ticking by and I must run to decorate his grave for his birthday. I will finish this entry tonight....

 

April 16, 2008

God bless VA TECH

1 year later........

 

Sunday January 6, 2008

Another New Year

Another 410 days

Another year has begun. I dread New Year's day every year now. 2008 seems farther away than 2007 to the year 2004; the last time I got to hold Christopher in my arms. In 2007 I could say it's been 3 years, this year in 2008 I have to say it's been 4 years since I  last kissed my sweet boy. New Years Day, just another reminder of yet another year that's going to go by without him.

The best Christmas presents I received this year were the Christmas Cards that were addressed to "Paige, Joe, Katie, Andrew and Angel Christopher".  I have a friend who address every card sent to this house as "Mr. and Mrs. Joseph & Paige Migliozzi, Angel Christopher Migliozzi , Miss Katie & Master Andrew Migliozzi". And in that second it takes her to write Christopher's name she is saying "I remember". She is saying "I know you have another son you love". So thank you Alli, you never forget him and I am blessed to have you!  I get so tired of hearing "At least you're lucky to have Katie and Andrew!". Trust me, if anybody in this world knows how lucky they are to have children, it is me, you don't need to remind me. All children are a precious gift given to us for only a short time.

Any day now, and I don't know which day exactly, Andrew will have lived longer than 410 days, the number of days Christopher lived. He is 13.5 months, the same age Christopher was when he died. Andrew is finally starting to grow a little hair, with little wisps around his ears like his brother had, and Joe even joked this weekend that he needed to trim around the ears like his brother. With the passing of 410 days, there will be no more days to compare. No more first birthdays, no more first Christmas, no more childhood markers of that first year of life. 410 days was all the time I got with him, so short, so sad, so happy. I don't know what else to say about 410 days, I just thank God for being able to watch Katie and Andrew grow up.

 

Friday December 14, 2007

Pizza at Christmas

I feel like a pizza at Christmas.

 

1 part UGH!!!

The typical "adult stress". Making sure everyone has their gift, balancing the budget, getting the cards out, mailing a zillion things, etc... etc... everyone knows what I mean! I always try to make this part the smallest, and make sure we all stay focused on the blessings God has given us...

1 part WOW!!!

I try to remember to look at Christmas through a child's eyes (although Santa this year is a very traumatic experience). I love the beauty of the twinkling lights and all the decorations, truly breathtaking. I love the sophistication of  winter clothes, gingerbread martinis, the chocolates, the smiles with friends, the parties and celebrations, and did I mention the gingerbread martinis? A time of just reflecting and remembering what's important in life, of anticipating Katie and Andrew's smiles and giggles on Christmas day as Katie rips open the presents and Andrew eats the paper. I try to make this the largest piece.

and  the last part:

1 part Tears:

This piece can sometimes be the most suffocating part of my day, or somedays a piece so small I don't realize it (this is usually on the days I'm pinning a two year old down in the grocery store ripping chocolate out of her hands and trying to put her shoes back on). This piece sees three little stockings hung by the fireplace, knowing only two will be filled and loved on Christmas day. The third stocking will hold it's customary Elmo on Christmas, knowing Joe and I will take this Elmo to the cemetery on Christmas day, We will leave the kids with their grandparents for an hour and go to the cemetery to give Christopher his gift, and put it under the tree we will take out and decorate for him this weekend. 

This piece is thankful to pull out the Christmas stuffed animals for the kids, and not realize the big huge reindeer has a tag around its neck that says "Christopher". (A gift given to him at the hospital when we were there for ERT around Christmas). I don't know what I am going to do when their are no more things to find of his, no more things that pop up in boxes or closets when I least expect it. I pray there will always be something there...

This piece is thankful for the Parent Bereavement Group that has started through Life with Cancer at the hospital. For meeting other parents and hearing about their beautiful angels, and knowing I am not alone. For coming out from the meeting last night to hear "It's a Wonderful World" by Louis Armstrong when I turned my car on, one of my "Christopher Songs". I use to listen to this song in the hospital, just knowing Christopher would make it to walk my mom down the aisle at my sister's wedding. and he and Joe and I would dance to this song because he would cured.

This piece is thankful to come home and find e-mails from a good friend's daughter (who I am very proud of) who is doing a project on Hurler's syndrome, and to find e-mails from other Hurler's families I can hopefully help...

This piece hurts, it sheds tears, and only emphasizes a broken heart this time of year...

This piece knows "he is here", only I wish "he was here"....

.....Coming Soon, Another 410 days.....

Tuesday November 13, 2007

A year ago today I was admitted to the hospital for nausea, vomiting and dehydration. That was because Andrew was on his way, and tomorrow will be his first birthday! He is a precious boy, and has completed our family. He and his sister love each other so, so, much and have their own secret language where they just laugh at each other. I see so much of Christopher in both my children. Andrew has his "Virginia Tech Quarterback" build and blond hair. Katie has his eyes that sparkle and say "look out world". She gets sweeter every day, and just saying her name makes me smile. We are so blessed by our three precious children.

We had a few people over for pizza and cake to celebrate  Andrew's birthday (and watch for the first time in 32 years Tech beat FSU - one for the baby books!). As I was smiling and laughing at my sweet boy crawl around in his big floppy 1st Birthday hat, a strange thing happened, I was "back at Hopkins". When a person lives in a hospital for six months watching their child go through surgery after surgery, and procedure after procedure, it induces a type of post-traumatic stress that creeps in on occasions when you aren't expecting it. Flashbacks to the day, reminders of the event. I couldn't help but remember another little boy who spent his first birthday fluid overloaded in the PICU. I've always felt first birthdays were such a special, precious marker, it truly is an entrance into childhood and life. Pretty soon, Andrew, like Katie, will surpass Christopher for the amount of months he lived and their will be no more anniversaries to compare to.

Joe had extensive sinus surgery in the beginning of October, and again in the days leading up to his surgery, "I was back at Hopkins". We figured up (between us and the kids) we have been through over 16 surgeries (doesn't count numerous cardiac procedures I have had) in our 9.5 years of marriage. Having a procedure or surgery for us or the kids, really isn't a big deal, we're use to it by now. It truly is just another day. Joe's surgery was in a beautiful outpatient center, he was only under anesthesia for 2 hours, and everything went fine. However, I felt like I was back at Hopkins with Christopher, sitting on the floor, outside the OR's so the minute the OR doors swung open on his way to recovery or PICU I would be right there. I would take Christopher back into the OR for all his surgeries, help anesthesia put him to sleep (reminding them I was an OR nurse and this was MY child), and informing the anesthesia personnel the right size endotracheal tube to use. I'd go take my mask and gown off, and go sit on the floor, by a nasty old trashcan, waiting for the doors to fly open. So, in a heartbeat, in just half a second, I can be "back at Hopkins".  The memories will come like a ton of bricks, no warning, no notice and they literally cause me to feel suffocated and physically sick. In the days leading up to Joe's surgery I just felt physically ill.  There is just nothing else to do in these situations, but ride out yet another wave of grief, and continue on.... I have to for my children and my husband. I really don't have the luxury of just sitting and processing - I have to keep on moving.

This has been a crazy fall, filled with birthday parties, baby showers for friends, weddings, Va. Tech football, work, graduate school and more work.  Katie and Andrew have a beautiful spirit that permeates our home and fills our lives with happiness....  We smile and laugh every day, and no longer feel guilty for it - we "live" life, even though their is always a cloud that pokes around the sunshine.  For all of this, I am so, so, grateful, for in just a second at any time of my day I can be "back at Hopkins".

I sometimes wonder if I should stop this website, since I don't get to update as much as I would like, but I think I may keep it up forever because the death of a child never ends. Their is no "time heals all wounds," their is no happy ending. He's been gone for three and a half years, yet the pain is as fresh and raw as three and a half seconds ago. Time is irrelevant when you loose your heart...

Happy 1st Birthday to my beautiful boy! Thank you Christopher for sending down such beautiful children for us to watch grow up, I am so proud of all three of you and honored to be your mother.

Wendesday October 17, 2007

“D” day, 4 years later

Birthdays, Beaches, Buses and Butterflies

 

Birthdays -Thankfully fall has finally arrived. Ever since July became Katie’s birthday “month” she walks around the house everyday singing, “Happy Birthday to me”. Another birthday passed for myself and Joe, which meant another occasion without Christopher. We always try to give the other person a card “from” Christopher. Just a reminder to the other person our boy still loves us…

 Beaches & Buses - The first week of September, the week of Labor Day, we went to the beach. Packing I kept feeling like I was forgetting something, something didn't feel right, I felt like I was missing something. I remember I felt this way last year also. Packing the kids up, I felt like I was forgetting Christopher, where was that other child I was suppose to pack for? The mom instincts don't go away, they are still there, longing for the missing child. The first week of September is also the day school starts in Virginia. Looking at the school buses I couldn't help but think next year my Christopher would be riding the bus, off to kindergarten. I could just see him at the bus stop, little Snoopy lunch box in hand, but I will never have that precious memory with him. I told Joe, next year on the first day of school, I can't be here. I can't see all the other kids getting on the bus, knowing Christopher should be with them. I need to be somewhere, far, far, away, where I won't have to see a reminder of what I don't have.

 

On my day off last week I took the kids to the cemetery to decorate Christopher’s grave for Halloween (I’m pretty sure this is not what most moms do with their kids on their days off of work). I had a Snoopy pumpkin doll to put on Christopher’s grave. Katie dragged the big stuffed Snoopy up the hill, put it exactly on top of her brother’s grave (without any instructions from me), turned around and went back to the car. I think my mouth hung open in astonishment the rest of the day. I just knew I would have to wrangle the Snoopy out of her arms, since everything these days is “mine”  and "Katies" and their would be drama. But she put it exactly where it belonged and was on her merry way.

 

 I have always been worried about how his death would effect Andrew and Katie. I just want them all to know how special and loved each one is. I never wanted his death to overshadow their lives, only bring their lives full of light. For the first time ever, I felt peace about how Christopher would be incorporated in Andrew and Katie’s life.  Katie just knew what to do with the doll, it belonged to her brother, and that was that. The rest of the day was spent shopping for a friends wedding and meeting Joe for lunch, with lots of giggles and diaper changes along the way. Just a “normal” day for our family. At night when Katie says her "God blesses" she always points to the sky and says "agl kisper" (angel christopher)."

Butterflies –

Joe was in one of his best friend’s wedding this past weekend. A beautiful wedding overlooking the gorgeous mountains of Virginia. As the bride and groom were saying their vows a beautiful white butterfly flew over “Uncle Chris” and his new bride, and their was no doubt that the angels were watching from heaven. My heart aches I will never get to see my Christopher get married and have children. A tear escaped at that moment, my heart so full of happiness to see our wonderful friend so happy, and a tear of sadness for my Christopher to never know the love of a spouse. Two parallel universes I balance all the time.

 And so this brings me to “D” ( Diagnosis) day, the day Christopher was diagnosed, four years ago today and our life changed forever.

I don't know what to even say, but all we have in life, are the seconds it is made of. All it took was one second, and our life was changed forever. This day will always bring with it a day we stop and catch our breaths, and remember our lives "before" and "after".

 

August 15, 2007

Reflections on "3"

This update will have reflections from summer

It has taken me over two months to write this update. Life has been crazy between Andrew teething, and having to call the Fire Dept to come get Katie unstuck from the stair banister (somehow in her infinite wisdom as a 2 year old, she got her head stuck between the stair spindels). This update will be a compilation of events, thoughts and memories that are broken down into categories.

 

 I have always been fascinated by the number "3". I don't know why. I just knew I would always have 3 children, and 3 college degrees by the time I was 33, I only have 3 classes left to go until degree number 3.Perhaps growing up with an unknown fate of my cardiac condition, "33" became my "scary" age. We all have it, the age where we sit back and reflect on where we have been in life and where we are going. "3" has always been my number. I still have a year left before I hit my "scary" age.

Christopher's angel day (June 11) came and went like it usually does. The weeks between April (Christopher's birthday) to his Angel Day in June are ones spent in agonizing pain with memories flooding every crevice of my life. I spent the weeks leading up to angel day in such a frenzy I got myself physically sick. I ended up in Urgent care with a fever, vomiting, and lethargy, this pattern repeats itself every year. And than the day comes...and there is peace.... A kind of stillness, a day so surreal it leaves me paralyzed. This year I dropped the kids off at school and went to the cemetery, I came home and took a nap, there is just no other way to get through it. We are so thankful for the phone calls, e-mails, and cards.  To our friends, you will never know how incredibly grateful we feel that you remembered. There are not enough words to express our gratitude and how much your kindness truly deeply touches our hearts. We know people are praying for us, we can feel the prayers,  your prayers and love continue to wrap us in a blanket of love to help us get through the day.

On June 17, Father's Day, we had Andrew baptized. I didn't realize until a few days before that was the day we buried Christopher. So three years to the day we buried our son, we baptized our third child. Three years ago I was standing at the exact same alter giving my son's eulogy. As I was driving home a few days before the baptism and realized this, I freaked out. I didn't know if I could go through with having the baptism on the same day. We went ahead with the baptism and it beautiful. As a good friend said "July 17 will now be the day we gave both our boys to God, one to go live with him, and the other to live in his heart." Those words gave me peace, and I knew the day was handcrafted by Christopher.

The month of July was filled with parties with friends for Katie's second birthday, and a surprise party/birthday party for our good friend Brian and Katie. For two weekends our house was filled with children's laughter from the moonbounce, chocolate cake smeared on floors, and I am still finding the occasional piece of glitter or deflated balloon in a corner. It was truly a blessed month with having friends in our home to smile and laugh with, it's what makes this crazy world seem not so crazy.

Signs

So life continues, however it is always tinged with a certain dark cloud, some days darker than other. In the 8 years I have studied and worked at Fairfax Hospital I have never visited the chapel. A few weeks ago I was having a particular difficult time and as I walked passed the chapel I opened the door and went in. The pain in my heart was too heavy, and I simply didn't know what to do. I asked God to help me, to somehow lift this pain and help me because it is crushing me. That afternoon I was in Employee Health and I got a sign from Christopher. (I ran over my ankle with a cart of sterile surgical instruments and it wouldn't stop bleeding - basically, I'm a clutz). As the nurse was irrigating and bandaging my foot the paper towel dispenser across the room started shooting paper towels out.  No one was standing by the paper towel dispenser, and you see this was no ordinary paper towel dispenser. This was Christopher's favorite type of paper towel dispenser. He was a simple boy, didn't need a lot of fancy toys, just a paper towel dispenser we use to play with at the Children's House. It had a sensor in front of it and Joe and I would run to it and make towels shoot out and he would laugh and laugh. The nurses taking care of my foot started laughing there must be a ghost in the room, but I knew it was an angel in the room. If I can only remember the lesson Christopher taught me that day, I would be so much better. To turn my pain over to God, However, I have a mother's heart that aches, and the head and the heart don't always line up.

VCU

I had the honor of giving a lecture at VCU in Richmond a few weeks ago. I lectured on being a parent of a child with a chronic illness. It felt so good to do this. I really feel this is my calling. To help parents of children with chronic and terminal illness, their is so much work that needs to be done for these families. We can do so much better to help support these families.

 Life Continues with Constant Reminders

There are always constant reminders of Hopkins, both the good and the bad.  Every day something pops into our life, a reminder:

• E-Mail: Cleaning out my e-mail box the other day I found the original e-mail announcing his diagnosis to our friends. It startled me to read my words again. We were so full of hope. In many ways, we still have hope others will never hurt again from this disease.

• Laundry: I was grabbing the stain stick off the laundry shelf last week to get another impossible stain off of Katie's shirt, and their it was on the top of the stain stick: "Migliozzi Room 302". This was what we had in the Children's House. It took my breath away to read it, a million little reminders, in some ways, I hope they never go away and I feel blessed to have them.

• Teething: Andrew is following in his big sis and brothers footsteps as a bad teether. The past few weeks have been filled with uncontrollable crying, fussiness, vomiting, fevers and agony as the first few little teeth pop through on the bottom. When I went to pick him up from school last week the first thing I heard when I came in the door was, "Christopher came to check on his little brother". A big yellow butterfly had flown past Andrew's window when he was crying. Big brother was checking up on him from heaven. The kids have a bib that reads "I love my big brother". I hope they knew how special the three of them are as siblings to have each other.

• Christopher's Girlfriends: On the day of Katie's birthday party, I ran out to get the mail and opened a card. It was from one of Christopher's girlfriends Nurse Jen. It was a beautiful card, so incredibly filled with love, and once again Christopher had popped up at his siblings big events to let us know, "he's still here, everything is ok."

The Elephant in the Room

Last, but certainly not least, I must talk about the elephant in the room. Lately there have been situations where I have felt like the "elephant in the room". I got the old "how many children do you have question" and it provides an akward silence, downward stair and sometimes people just not talking to me. I understand, I truly do that it is starling to here when a child has passed away. However,  because something is uncomfortable, don't ignore someone, it only hurts worse. The last few weeks I have been struggling with just a physical and emotional exhaustion unlike any I've felt before. I've been constantly sick since Andrew's been born, and I feel like a stick bending in half. However, I have realized for every "elephant" moment, there are ten times as many angel moments in my life.

       I was sent a book on grief by another Hurler's mom that couldn't have come at a more appropriate time. She reached out to me, found me and sent me her book. A very special artist is sending me a necklace with the butterfly phrase on it. And as always, there are the people in my life God and Christopher have placed. My husband is awesome, and I love him more everyday than the day before. The best part of my day is picking Katie up from school and having her smile and run up to me - it is the best smile in the world. She has Christopher's sparkle in her eyes. The sparkle that says she will take on the world. Andrew looks so much like his brother, it takes my breath away. He can even projectile vomit and keep smiling the same way Christopher did. All three of them are truly God's greatest. As always our friends have been such influential people in our lives. they still hold me and let me cry, slip me a card on a day when I need and are just there. I do not know why Christopher died, but I know he put people in our path to help us along.

      I am in the process of "reevaluating" my life. The past few years have been a physical and mental mountain to climb, but we keep climbing. We stumble, we are tired. We want to stop, yet we still climb. I hope somewhere along the way we help other people, as of today this website has received 63, 276 hits. I simply don't know what to do sometimes, the only thing I can do is pray, and when I do, my angel sends me a sign he is still with me.

A poem one of my angel friends sent me I dedicate to Andrew and Kate:

A Different Child
poem by Pandora MacMillian

People notice
There's a special glow around you.

You grow
Surrounded by love,
Never doubting you are wanted;
Only look at the pride and joy
In your mother and father's eyes.

And if sometimes
Between the smiles
There's a trace of tears,
One day
You'll understand.

You'll understand
There was once another child
A different child
Who was in their hopes and dreams.

That child will never outgrow the baby clothes
That child will never keep them up at night
In fact, that child will never be any trouble at all.

Except sometimes, in a silent moment,
When mother and father miss so much
That different child.

May hope and love wrap you warmly
And may you learn the lesson forever
How infinitely precious
How infinitely fragile
Is this life on earth.

One day, as a young man or woman
You may see another mother's tears
Another father's silent grief
Then you, and you alone
Will understand
And offer the greatest comfort.

When all hope seems lost,
You will tell them
With great compassion,
"I know how you feel.
I'm here
Because my mother tried again."
 

 

Sunday June 17, 2007 - Father's Day

A little brother is baptized

 

3 years ago on this day we buried Christopher

 

Monday June 11, 2007 Angel Day, Three Years Later

3 Years an Angel

We miss you.

_____________________________________________________________________________________________________________________

Monday May 7, 2007

Reflections from Christopher's Birthday and the Tragedy at Virginia Tech

How do April Showers bring May Flowers?

I think about this website all the time. I sit down to write on a weekly basis and every time I do a dog barks, a baby cries or something breaks and I must go running. So I hope I have a few minutes to actually complete some thoughts.

The month of April started  out with an unexpected pain upon finding out a close and beloved friend was diagnosed with a very serious illness. These friends are angels in our lives, and our hearts are truly broken with them. They were there for us, and  we will be there for them, and we will always hold onto Hope together. There is always a miracle, and we will never give up, ever.

The Tragedy of Virginia Tech.................

On April 16 I was in the middle of teaching CPR when Joe paged me. Within a minute he paged me again, and I immediately knew something was wrong. I thought one of the kids must be sick, and was stunned when he told me the news there had been a shooting at Norris Hall, nobody knew what happened, little did we know the devastation that was to follow. This tragedy has just devastated us, for days we couldn't speak, we just walked around like zombies. Phone calls and e-mails were non stop with friends checking up on each other just to make sure nobody was in Blacksburg we knew, trying to find out if our sorority on campus was ok, or if anybody had been down there for a visit and gotten caught up on this.

This hit close to home on so many levels, my sister and I both lived in the dorm where the shootings took place. Most of Joe's Engineering classes were in Norris, and Joe's old roomate had the professors that were killed. Another close friend who is a professor down there taught the shooter, and he and his wife have been present at many of the funerals. She sends us e-mails telling us of the real devastation that has happened in Blacksburg. Kids that were killed were kids from the high school my children will attend, and what's worse, the killer lived about 5 miles away. Was he standing next to me one day when I was at the grocery store with my babies? Did we go to his parents dry cleaners? So many questions. The Virginia Tech tragedy was, and is this area's 9/11. EVERY single person knows someone who was either killed or affected in some way.  One of the victim's is buried where Christopher is. I plan on going out there this week and placing a big ribbon and note to her parents.

To everyone who has seen this website, they see how devoted we are to the school. Our cats are Hokie and Pokie, our babies wearing the t-shirts and jerseys, it was/is our "safe place." It is our piece of paradise that is filled with hopes and dreams.  Anything good that has happened in my life has come from that school and town. My husband, my friends, it is our own little piece of heaven. I pray when I am a grandma I am baking cookies in the shape of the Hokie Bird and taking them down to the grandkids on football weekends. And than once again our world was shattered and crushed. The only consistency we had in our lives, through all our heartaache and pain the past few years had been torn apart.

Our beloved school that should be known for doing the "Hokie Pokie" at football games was splashed across the world. It will forever be known where the worst massacre in America took place. I have a big maroon, orange and white ribbon tied to a tree in my front yard, with a VT flag underneath. The pain is so raw, it may just stay there forever at this point. This tragedy, shook the foundation we had tried so hard to build after Christopher's death. It reminded us, we can loose everything we love in just a second. Our foundation was shattered again....

On the day I graduated from college, it was freezing outside and Joe bought my parents and sister a stadium blanket to huddle under. That's Blacksburg, it could be snowing one day, and the next you could be playing frisbee on the drillfield. When Christopher was in the hospital I slept under that blanket every night. It was one of the few things I brought from home. That blanket gave me hopes and dreams for Christopher. At night I would dream of taking him to his first football game. It was one of my goals. I had visions of him riding on Joe's shoulders into the stadium, I than would know life would be ok.......

We went into Christopher's birthday with a numbness that felt surreal, the numbness and haze of the week brought with it a peace that allowed us to function. The same week Katie was getting in her molars, and Andrew ended up in the ER lethargic from a horrible GI virus. On his birthday we went out at noon to put out balloons and toys, I cried, and than we had to go, the kids were in the car. When we got home we sang happy birthday and had chocolate ice cream cake, Katie's favorite. She's on a hunger strike and will only eat ice cream, cheese and cheerios. We got a Maggie Moos cake. Maggie Moos brought Ice Cream cake to the Children's House every week, I thought it was appropriate.

So how do we come upon May flowers after April's horrible showers?

 

-We have beautiful flowers, they are named Katie and Andrew and their brother shines down on them every day.

-We have seen friends from Tech the past few weeks to celebrate just being friends for so long and watching each other's children play as we kicked back a few beers and good memories. We had a baby shower to welcome a miracle baby.

-We go to Easter Egg Hunts and birthday parties, we have learned to not feel guilty for living.

-We send our friends we know who are hurting prayers, and care packages and most importantly love.

-We look for signs from "above", from where the "April showers" come from. I was having a particularly bad day in April, one where I cried and cried, I missed Christopher so much. The doorbell rang and there was a package from an angel friend who I had never met, sending me a letter, letting me know everything would be ok. It came at the exact second in time when I needed it most.

-We forgive people for the insensitive comments that we still continue to hear, that cut us to our soul. They know not, no one means harm.  People do not realize, although he will be dead three years next month, in our hearts it was three seconds ago.

-We stand just as grateful to the friends that remembered his birthday. We are thankful for the people that continues to realize we are hurting and are there to talk and help us figure things out.

-We pray the article that was written in the Washington Post reached someone, somewhere on a higher level, to help them in their time of need.

-I met a lady that sells beautiful jewelry to help cancer patients. It reminds me there is still goodness and love in the hearts of so many people. I can not wait for my children to have the chance to meet all the wonderful people their are in life.

-When we go out to the cemetery after church and Katie starts dancing on Christopher's headstone in her little Mary Jane's (she loves to hear the clicking sound) we smile knowing how blessed we are, knowing the angels are smiling down.

In Conclusion:

Over the years, people who didn't go to Tech or where from "these parts" often asked me what a Hokie was. Rumors were it was a castrated turkey (probably something somebody from UVA made up). I could never really explain, I just smiled. From now on when people ask me what a Hokie is this is what I will say:

What is a Hokie?

-A Hokie is the name of a Virginia Tech alumni's cat or dog.

-A Hokie is someone who knows the months between August - December every year is really the season of "Beemer Ball" and is devoted to tailgating on Saturdays.

-A Hokie knows a good beer.

-A Hokie brings you a homemade meal when you are in the hospital with your dying child. They stay with you, and hold your hand and give you a hug.

-A Hokie sends you a care package of food, and cards of support when you are fighting for your child's life.

-A Hokie is in your wedding doing the Hokie Pokie.

-A Hokie is a pallbearer at your child's funeral. Even though a Hokie may not have seen you for many years, they will be there for you, at the worst time of your life, and you will feel their love. They will NEVER leave your side.

-A Hokie will continue to love this beautiful university despite the tragedy and sadness that has come from it. They know Blacksburg is a piece of heaven, and a place of hope.

 

 

Tuesday April 24, 2007

Happy 4th Birthday Christopher

God Bless Virginia Tech

 

April 2007

So much has happened in the past few months, I will start off one by one.

Katie and Andrew:

I went back to work in February, and am working a few days a week and still taking the occasional graduate class. Andrew and Katie continue to be the light of our lives and make us smile everyday. At 5 months Andrew has just started to flip to his stomach and I wouldn't be surprised if he's crawling in a month or two! Katie gets sweeter everyday and at 21 months can say her alphabet to "f", and her numbers to "7". She is acting more like a big sister everyday and will now bring Andrew his bottle when he cries (sticking it his eyes after taking a sip) or will throw a toy at him, thinking she is helping him. The two will look at each other and just laugh and giggle and I know they are destined to become become friends.

Washington Post Article

As you can see from the previous entry, I was published in the Washington Post. I had NO idea they were going to publish this, or else I would have said something about transplant or Hurler's in the article. However, I am so glad I did this, the website had 2,000 hits in less than a week. Hopefully it raised awareness about the disease.

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Published in the Washington Post  Tuesday April 10, 2007

RANDOM ACTS

Tuesday, April 10, 2007; Page B03