Daily Updates July 2004 to November 2006

Our third little miracle will be born on Tuesday Nov. 14 by c-section, two days away - and the emotions are overwhelming.....

I was hospitalized earlier in the week for vomiting and dehydration. I'd lost too much weight too quickly, and the docs thought it would be better to get me "pumped up" and strong again. I had my own room, peace and quiet, and it was almost like a 23 hour vacation in the hospital...

With all the quiet of the hospital, it brought me back to my time at Hopkins. All the days I spent looking out the window at the stars, just knowing there was life on the other side. In the background I had on "Sponge Bob, Square Pants", it always reminds me of one of my favorite angels from Hopkins. Joe brought me the catalogs and mail and I started reading the monthly issue of Compassionate Friends. As you may recall Compassionate Friends is a support group for people who have lost children. It hit me at that moment how surreal life seemed. Here I am in the hospital 37 weeks pregnant with a baby boy, and at the same time I am reading a newsletter for parents whose children have died, to figure out my first sons death. Once again life and death, death and life, interchangeable and can't be separated. So hard to comprehend, so abstract, I can't wrap my mind around it.

I am probably more terrified to have this child, than any other baby. Their is a blissful ignorance before you have your first child. I remember worrying about how the baby would affect my career, would we be able to go out to eat again, and would we ever sleep again. Before you have your first child, you have no idea the depth and love you will feel towards another human being. When you have that baby you know why people say they would die for their children, why they fight for their kids, and how your life is never the same because the incredible bond of love. When we had Katie we were in a cloudy haze of grief and she came quicker than expected and we didn't have time to think.

i have now preparing myself for whatever the new baby brings - almost waiting for the sky to fall in again. The first two tended to show us who was boss from the beginning. Isn't it awful to be expecting a baby and preparing yourself for the worse that could happen? It's just a harsh reality... There have been times throughout this pregnancy when I have had bad days and cried over my grief for Christopher, and when I did the baby boy inside of me would start kicking away. Almost as saying "it's ok."

This has been a year of "normalcy" and firsts with Katie. We've experienced all the normal baby stuff, rotavirus, hand-foot-mouth and ear infections. We've almost been like first time parents again, we've experienced a year of "baby normal" and a year of "baby with terminal illness." It's still hard to wrap my mind around the "normal baby stuff." I've finally stopped feeling her back for kyphosis or worrying every bruise is sign of leukemia (I've learned bruises come from normal baby crawling and walking). She's ok...

Three years ago marked one of the worst days of our life - the day our child got diagnosed with a terminal illness. It amazes me how in all the billons of seconds in our life, all it takes in one second in time to forever change our lives.

Three years ago I did not think I would have three children, live in a hospital for over 6 months and have my child die in my arms. I didn't know I would think bald sick children where the most beautiful kids in the world. I didn't think I would survive. I truly didn't know what hell was, I do now...

I didn't know my own strength and I certainly didn't know the circle of love that would envelop us. God has blessed us with the most incredible friends. They have never left our side. They taught us their really truly angels on this earth.

It has again been quite a while since I have updated. So many thoughts all the time so I am writing today and publishing some past entries I wrote but never published.

So the summer has come and gone, and I am glad to see it go. I've never been a fan of the heat, and with my big belly these days, it's not fun.

Katie continues to be the light of our lives, and even though we have battled four ear infections in 5 months, we continue to be amazed at her everyday. She has finally started crawling and helps keep me in shape by running after her. She crawls around the house saying "ro, ro, oat" (row, row, your boat) and "uh - oh" (with her mouth in a perfect zero as she says "oh").

Her first birthday came and went, and it brought back feelings and emotions I wasn't expecting. For some reason, first birthdays are such a marker, such an "entrance into childhood". Christopher ended up in the PICU in kidney failure on a morphine pump. When I look at pictures of that day, he was so, so, sick. I am so grateful to the people that tried to make his day special. I still have the balloon, plates and banners from that day.

Within the next few days, Katie will have lived longer than Christopher. I will have a child who has lived longer than 410 days. I didn't ever think I would be measuring my children by how many days they have lived, but she will have lived longer than him. About 3-4 times a month we still go to his grave. We tidy it up, leave flowers or toys, and just spend time. A few weeks ago I walked down the hill from his grave and looked up at it. There was my husband cleaning it so carefully and sitting next to him was my beautiful baby daughter. She was sticking grass in her mouth and trying to crawl across her brother's grave marker with the butterfly song on it. I never thought this is how my family would spend their Sundays, with my "living child" crawling over my "angel child's" grave. I feel I am in a constant balance between life and death, death in life, and life in death.

My birthday was last week, and I just laid at his grave and cried. My arms still physically ache to the point they feel like they are going to fall off sometimes. Not being able to hold him is also a physical pain that is so overwhelming, and that day the physical pain was unbearable. I was so sad he couldn't be here with us, but I got a beautiful sign he was ok, thank you Brandon....

For the first time in two and a half years I laugh and don't feel guilty about it. Katie makes me smile everyday and I know that's ok. I continue to work and take graduate classes, I need the structure in my day, it helps my mind from going crazy. I love to see my girlfriends and discuss the "matters of the world" such as makeup, teething, and what's going on with who. I have a wonderful marriage, I go to church, and I believe in the goodness of people and Almighty God. The best part of my day is when my little girl with her four teeth smiles at me, it just melts my heart all the time. I think I've managed to somehow keep it together and be thankful of my blessings. But deep in my heart I'm still in pain everyday. I've cried myself to sleep the past two nights, it never goes away, I just learn to incorporate it as a part of my day. I don't understand why I have to live in this pain the rest of my life (can you tell I'm having a bad day?) I miss my boy...

I've always used this forum to hopefully help others in their quest of finding out information about Hurler's Syndrome, or to help them not feel so alone in their grief. So I am going to use this to discuss something very important I would like to address.....

Many people have been congratulating us on "baby #2". While we feel blessed to have such wonderful encouragement, I would like to clarify the fact we have 3 children. Because Christopher died, does not mean he did not exist. When a woman looses her husband, we don't say she was never married and act like she never had a husband. When a child looses a parent, we don't say that child never had a parent. So why must we act like we never had a son? Now Joe and I realize, and are fully aware, of the fact this is an uncomfortable subject people don't like to discuss. However, to not acknowledge him as a member of our family is like a knife cutting through my chest, he is our son, he is real. Sometimes I have to look at his pictures to remind myself the pain is real, but he did, and does, exist.

We have three children, one who lives in heaven, and two who will live on earth. That is the way it is. We are parents to three children, we just parent each one in a different way. God has blessed us......

So for all the parents out there, whose child now lives in heaven, help us to celebrate their lives like we celebrate the lives of our living children. Each child is a miracle and a gift, not to be forgotten or overlooked.

I wonder if the angels can see the fireworks from heaven. I wonder if there's a little parade, and all the baby angels wave little flags and eat hotdogs. I constantly wonder what Christopher is doing during his day. With all the recent thunderstorms and lightening I tell Katie all the angels in heaven are having a party and the lightening is a strobe light at their party, the thunder is the angels dancing...

Katie has FINALLY started eating solid food. I sit and watch her eat Cheerios and my mouth literally hangs open. It is the most amazing thing I have ever seen. To see her trace her little finger around the Cheerio and watch her mind as she makes the connection to put the cheerio into her mouth, she is the smartest child in the world. I think she deserves a Nobel prize, to figure out such an amazing thing, it literally leaves me in wonder....

Now most people reading this will have had, or known kids to eat cheerios. But you see, Christopher never got to eat cheerios, he never got to so the "normal" things in childhood as simple as figuring out how to eat. Joe and I could see his little mind clicking away all the time, thinking in his Christopher way. He was such a smart, smart, boy.... I take nothing for granted with Katie. Every childhood marker is truly a miracle, a miracle of growing up, of living this life, it simply astounds me to see her reach these markers. It breaks my heart he never got to eat Cheerios.

There has been a significant reason why I haven't updated the website in the past two months, which will be explained. There are also past entries I have written that will be published under these entries.

In the past two months, we have been living under a stress and hell unfelt since our days at Hopkins. "Anniversaries" including birthdays and angel days are still an excruciating time. The pain and remembrance of loosing our boy is overwhelming. I have dreams of the ventilators, the machines, the look on his face, the hard bench we slept on. It's a constant challenge and anniversaries amplify those feelings.

Last month we moved (just about two miles down the road from where we were living) and left the house where all our memories of Christopher were made. I cried when I left his room, it was always my goal to get him back to that Snoopy room. The new house is great, but it started off as a huge money pit. On top of that, Katie's been sick, car broke down, work, school, life etc... However, in the midst of all this, God gave us a surprise....

God gave us a VERY UNEXPECTED, unanticipated surprise. As I write this, I am 16.5 weeks pregnant! The stress we have been feeling the past two months was not knowing if this baby had Hurler's Syndrome. As you may recall, there is a 25% chance with each pregnancy that the child will have Hurler's Syndrome. To have a child die of a terminal illness, and than have to worry about your future children dying of the same terminal illness - it almost makes the pain 100x harder if that was even possible.

Part of what made this so difficult was they are no longer doing prenatal testing for Hurler's Syndrome in the United States. People are scared of law suits and are no longer doing testing. This is so absolutely heartbreaking for so many families. The technology is there, people are just scared to use it because of the almighty dollar. So we had CVS testing done here in Virginia at 12 weeks and sent to Adelaide, Australia. Yes, that's right, Australia. In order to find out if we were going to have another child who lived or died, we had to have testing sent to Australia. Because of flight time, some of the cells died in transit and, there were not enough cells to test. The drs. had to grow the cells out in order to test them, this took another two weeks to find out the results. Thank God for our genetic counselor, and the Genetics & IVF Institute, they were instrumental in getting the testing done. It wasn't fun moving, and praying that a medical courier service would make it to Australia with our little cells - I wouldn't recommend it. We moved on a Saturday, and I went in on Monday to have the testing.

After four weeks of waiting for results - a hellish four weeks - we found out on Wednesday we are having a Healthy Baby Boy at Thanksgiving!!! Thanks be to God... We started off Christopher's "Angel Week" not knowing if we were going to have another child who died. Just four days before his anniversary we found out the news....

We had received so many signs from Christopher, I am so grateful to him. I tell him he is the best baby angel in the world. Butterflies everywhere, a fortune cookie that said "A pleasant surprise is waiting for you, and a million "Christopher songs" everyday on the radio. In Church on Sunday as I sat there crying waiting for the results the pastor said "There are Andrew's who need you." This is the name we have been thinking about using (not 100% sure yet, still deciding). My head popped up when he said that, was this our little boy? In my heart I always knew there was "another little boy" waiting for us named Andrew. It is just what I always felt and knew.

We are thankful for the friends that remembered this angel day. Your love continues to overwhelm us, we are so grateful to you. Many people forgot this year. That's ok, I understand. Life goes on for people. However, our life never goes on but so much. People do not understand you just incorporate the pain into your daily living, kind of like brushing your teeth. It never, ever, ever leaves. I miss him so much and am so thankful for Christopher's constant presence and signs.

Katie gets more beautiful each day, and I am still getting use to a "normal" baby. She now sleeps through the night (almost all the time) and has two little baby snaggle teeth. I am so grateful we can give her a "sibling on earth". They will be 15-16 months apart. Many people have said "you will have your hands full." Well, maybe, but as long as I don't have to watch another child go through chemotherapy and die, everything else is minor in comparison. There will be no more children for Joe and I after this. We are done. Having to wait for test results was a nightmare. We wanted three children, and we got three children, just not in the way we imagined.

When Joe called to tell me the results he said: "We are done with this disease. It is over with Hurler's Syndrome. It can't take anymore of our children's lives. We are through with this disease - it is out of our children's life." I can't think of a better statement to sum up everything. This disease took our oldest son, and it won't take our other children. However, what Hurler's Syndrome never took was Christopher's spirit. It didn't take his beautiful little spirit that fills my heart and gives me a million signs a day from him. No disease can ever steal a person's spirit.

As I continue down the road of the never ending graduate degree I just wrapped up Spring Classes. One of the classes required me to go in and meet with the teacher for an evaluation. The teacher asked how I liked the class and I responded how much I enjoyed it, and how it was the first time since my son died I hadn't felt guilty for doing something I enjoyed. His response was the following: "If your son was here he would tell me to just get over it and move on with your life. You will never forget him, but you just get over it and move on." I thought I was going to die. I came home and cried to midnight. It was just the careless and reckless way he referred to the death of my child, like it was the death of my dog and I could get another one. I don't like the turn "move on", I think it sounds cold, like you are just stepping over a pile of dirt in the street. You don't ever but so much "move on", you continue. I continue my life.

When you loose a child, why do people treat you like you can replace a child? The thing people don't understand is loosing a child is like having an amputation of a limb; an arm or a leg. Only people don't see the amputation, because it's an amputation of the heart. It's not visible on the outside, you don't see the bandage, amputations of the heart are invisible.

You see a child grows inside you, they are apart of you, much like your arm or leg - there is no separation - you need that part to function in life. When I was working in the Operating Room and I had a patient who was going to have a leg amputated (or had been amputated) I could never imagine saying to them, "Sorry about that leg, we've got a great plastic model that will take that place, and you've just got to get over it and move on."

When you loose an arm or leg, you must learn to walk again, eat again, write a new way and put your clothes on a different way. In the beginning of loosing Christopher I had to learn to go into a "real store" (being in a hospital for 6 months doesn't count) and not feel overwhelmed, I had to learn to put on clothes that didn't smell like puke or vomit, and I had to learn to live life again. Children are apart of you, they are no different than your eyes or ears, your arms, your legs. They just grow inside where no one can see. They never, ever go away. Patients who have lost an arm or leg talk about "phantom ghost pain" where it feels like that extremity is still there.

I have phantoms ghost pains every second of life, I had a piece of my heart amputated on June 11, 2004.

I wonder if there's an Easter Bunny in heaven? This is a question that I ponder and worry about. As a mom I want to make sure my little boy still has an Easter basket full of goodies on Easter morning. I hope there are lots of Elmo's and banana yogurt's in Christopher's basket. Easter was our last holiday with Christopher. It was in the Children's House filled with lots of love and happiness around him. He didn't feel good on Easter, he was pale and swollen, and had a scab above his lip, but I remember him smiling...

Katie had her first Easter and looked like the most beautiful little girl in the world, with an extra special dress and bonnet. We forgot to take her to see the Easter Bunny, another one of those "normal" things you are suppose to do - still getting use to normal.

For the past month I have been getting coupons from the place at the mall that does all the kids pictures, "Capture that big birthday smile, each precious year deserves a portrait, his latest milestones will last forever with this special offer!" Just another reminder, Christopher's not celebrating his birthday with us this year. After he died we got "promotional coupons and diapers" in the mail at "each stage of our child's development". The diapers, pictures, and coupons cut like a knife. We know what we have, we know what we don't have. We don't need diapers and coupons to remind us. However, as we always say, we feel blessed to be the parents of two wonderful children. We just wish he was here with us, it never goes away.

By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, nephrology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

It has been over two and a half months since I have updated, and for that I am truly sorry. Every time I have sat down to write, "life" has gotten in the way and I have been interrupted.This update will be an accumulation of thoughts that have been written down at different times, and will now be put together.

January brought our friends annual super bowl party. Amidst the laughs at this year's party brought flashbacks of Hopkins. I remembered two years ago looking out the window at Hopkins, mad we were in the Hospital, and not at the party with our friends. Christopher would have been hanging out and "watching" the game, not hooked up to machines and vomiting.

February brought the memories of Valentine's Day. My dad had driven up to Hopkins to take care of Christopher so Joe and I could go out. My dad was so proud to take care of his "little partner". I also started a new job in February, one I have been overjoyed about. I was offered a position at Fairfax Hospital as Pediatric Clinical Instructor. I'll be helping with the NICU, PICU, pediatric and pediatric oncology nursing fellowships among other teaching opportunities. It is a part time position, so I can keep working on the never ending Master's degree. I have so many ideas, and am so excited to explore opportunities to hopefully help so many other nurses help their patients. I truly feel Christopher "led" me to this position. This is my time when I can still be a "mom" to Christopher. What people don't understand is when a child dies, all the "mom" feelings and emotions just don't go away. We have all this energy and love for a child, and when they die it is still there. My time at work is my time I can be a mom to Christopher.

March brought trying to balance work, school, Katie still not sleeping through the night, and many life changing events. We sold our house, and bought another house about two miles down the road. We will be closing on the house the end of April and moving in May.

At the beginning of March I attended a Virginia Tech alumni casino night. Sitting there with friends and laughing, I looked out the windows at the stars, and thought of my little angel. I remember looking out the window at Hopkins and seeing the same stars; praying to the same stars that he would be ok. I became so sad looking at those stars, and asked Christopher for a "sign" and went back to the roulette table. I place my bet on 24 (Christopher's Birthday) and it hit, I won $35,000! Now let's remember this is fake paper money. I doubt I should be praying to Christopher and "gambling" at the same time, but it was fake money, and all proceeds go to charity. I laughed, it was so like Christopher, I could see him laughing up in heaven.

Katie was baptized a few weeks ago, in the same gown Christopher was. I was very nervous, very emotional leading up to the baptism. It was very beautiful, and the congregation was crying. Pastor Don is leaving shortly and since he baptized and buried Christopher we wanted him to baptize Katie. We got our "signs" from Christopher for Katie's special day. The night before "Something the Lord made" came on, it was filmed at Hopkins when we were there with Christopher. We saw the dome, the statue where we prayed so many times. The next day during the baptism the little hand bell choir rang "Jesus Loves Me", the last song played at Christopher's funeral.I look for my "signs" and I whether or not they are real I take them, I figure you just never know when the angels are communicating. Better to keep my mind open, than to let them pass.

This month also saw over 50,000 hits on this website. I pray it continues to help other families out there.

The months pass and they still bring tears. People think it gets "easier" with time, but you just learn to live with the pain. The pain is incorporated into our lives and we still live each day trying to figure things out. I still find myself in a daze, and I can't believe I have a child who died.

I live in a world where I feel so blessed to have so many friends, awesome parents and a beautiful daughter. Katie has a beautiful smile, she holds her toes, and babbles all the time (of course saying da-da), so many things Christopher never did. However, I feel torn, and try so hard not to be "mad" at this disease. Being mad is wasted energy, yet with the month of April and Christopher's 3rd birthday approaching I feel so angry at this disease, at all diseases that steal children of their future. Angry that Katie's big brother is in heaven, and not here on earth so the two can play and torture each other the way siblings do. I'm not angry alot, just every now and than. If I stay angry, I let the disease win....

For the first time in two years, I have felt myself have many moments of "happiness". I don't feel guilty for laughing anymore, I have a job I love, Katie is a cutie, and Tuesday will mark my 8th wedding anniversary. After eight years of marriage and having a child with a terminal illness who died, Joe and I came out surviving Life keep rolling along, a new different a new normal.

I think about my boy all the time, and will probably be updating more as his birthday approaches. To everybody out there who continues to help us keep his spirit alive, who allows us to talk, and who remembers we have "two" children, we feel so blessed. Despite the constant inner pain, the world is truly a beautiful place.

The Brave Little Soul
By: John Alessi

Not too 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 peoples hearts". The little soul was confused. "What do you mean", he asked. 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 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. Many souls have bravely chosen to go into the world and suffer-to 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 his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into this 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 most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.

God and the brave little soul shared a smile, and then embraced. 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.

Thus 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. For so 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 grew 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 were changed forever. It was good. The world was a better place. The miracle had happened. God was pleased."

Wednesday January 18, 2006

I rang in the new year crying. I was so use to saying “Christopher died last year”, it’s not last year any more….Another year has passed, and he’s still gone. The nightmare never ends, the pain has gone from a sharp knife to a constant dull ache. WAKE ME UP PLEASE!!!! Somebody WAKE ME UP!!!!

I still feel like I live in a dull haze. Somedays are fine, most days are hazy days…. I ran a red light last month with Katie in the car, lost in my haze. It scared me to death. I was on my way to see Christopher’s grave, I pulled over and just shook. I’ve learned to incorporate the haze into my daily life. The haze and I are one. People don’t see the haze, I’ve learned to incorporate it so no one sees it. The haze screams "Wake me up!!!!!!!!!!!"

When people ask how we are, I describe it in reference to Hurricane Katrina. Hurricane "Hurler’s Syndrome" came and ripped my life apart. It stole my foundation it tossed everything apart. The rain still falls, fast and hard some days. Often when I look out on the horizon I see us standing on flat, empty ground. The wind still blows, and occasionally I can see the sun. I work towards the sun. My precious Katie is my sunlight, giving me a reason to fight. I have no foundation, everything is gone. Slowly Joe and I rebuild. One brick at a time. The bricks are heavy, they hurt to lift. Some days they are light as a feather, we have friends who make us laugh and together we build a wall. We see our precious Katie’s crooked smile and silly toes and it makes us want to build a castle to the sky. Her smile lights our dark nights and we build.

This has been a week of pain, I feel like someone is ripping my insides out again. Two years ago this week we were sticking needles in our babies body, giving him poison (chemo). I hate chemo. I think one day it will be a thing of the past, anarchical and outdated like leeches were to George Washington. Did we do the right thing? Did we make the right decisions? We’ve come to peace with most of these questions, but they still pop up. Sunday will be the anniversary of Christopher’s transplant, his second chance at life. We donated Katie’s cord blood when she was born. Hopefully it will give another family hope like we were given.

We are having a memorial blood drive at our church Saturday. I call it the “Second Annual Angel Blood Drive in Memory of children who have passed away from childhood illness.” We know too many children who have died.

Everyday I fall deeper in love with Katie. When Joe and I walk in the room and she smiles, it's brighter than the sun and makes my heart melt. That's the great thing about having kids, they teach you how to love even deeper, and even richer, when you think you can't go on. Their little smiles is what life is all about.

Our choir was awesome in church today. As I sat and listened to them sing "Gloria" the music was truly beautiful and overwhelming. I just knew their jubilant sounds were being heard in heaven, and for just a moment I knew it was something special, that Christopher and I could be sharing together. Sitting there, listening to the music together, him in heaven, me here on Earth, something to join us together again.

I have been sooo grateful to all our friends who have addressed their cards to us with "Angel Christopher" on it. It means so much. When you loose a child the thing parents want the most is acknowledge, acknowledge, acknowledge, that child. The broken heart may not be seen underneath a warm winter sweater. The tears may be covered by thick makeup, but they still live in their parents and siblings. That never changes.

A good buddy of ours became an angel on Dec. 5 and went to join Christopher, he was 8. Our hearts are so truly broken and saddened. We had gone through chemo and transplant together and had survived what I like to call "The Horror of Hopkins". I still don't know why children become sick, I don't know why they die. I just know they are loved. Their is a common thread I have found in these families. The families where the children become sick, the ones who suffer and become angels. The thread I have found that is so deep and so penetrating is - God.

With a steadfast heart turned upward, and hands constantly folded in prayers is a faith that is so pronounced it is piercing. Each family prays for healing - even though it may not always come in the way we want.... Even though we still hurt, we believe. It is this blind faith , the acknowledgement our loved one is OK, it is the only thing we have to hold onto.

I write about what I call "Christopher signs" as much for myself, than anything else. I keep them as record to remind me of all the times I feel he has come to see me, and give me a sign he is OK. You can choose to believe, or not to believe in "signs", but for me, this is all I have and they keep me going. Personally, I truly believe our loved ones try to connect with us and we must keep our eyes and hearts open, so as not to ignore what they may have to tell us.

A few weeks after Katie was born, I was in the bathroom drying my hair when I felt a tug at my pants. I sighed and was getting ready to say the two most famous words in our house "Down Belle" (As you may recall Belle is the beagle puppy I got after Christopher died). I looked down and no Belle! There had been a strong tugging at my pants and the puppy was no where in sight. I put the hairdryer down and felt astonished. I believe my little boy may have been paying me a visit...

About a month ago Joe's cousin e-mailed us to tell us that Christopher had been in her classroom! She's in Nursing school in GA and they were doing topics about genetic diseases. One of the groups gave a presentation on MPS and who should pop up on the screen but our own little Christopher, her second cousin! The group had no idea that the picture of Christopher was related to her, or there was a family member with an MPS disorder in her family Right there, in the middle of a classroom of women, and nurses no less. That's just "so Christopher."

Every year my parents church puts out beautiful wooden angels. Last year mom and dad bought one in memory of Christopher. It stays at there house throughout the year, and at Christmas all the angels are put in the front of the church and lit in honor of love ones. My dad checks on the Christopher angel at church, & his halo keeps tipping backwards. None of the other angels halos tip backwards, just Christopher's. My mom said it was because Christopher loved to have his hair blowing in the breeze, and it probably just tipped the halo backward. I like to think this. I like to think in heaven he has his beautiful blond hair back that fell out from chemotherapy. I like to dream his hair is blowing in the breeze...

Today is National Children's Memorial Day. It is recognized by Compassionate Friends and the MISS Foundation as a day to recognize and remember all the children who have become angels. It is a day to light a candle and hope all the baby angels from heaven see it, and remember they are loved. We got home from church, and I went to pull out my candles to light in the front window. We came up with our list of angels: Christopher, Cameron, Andrew, Zoe, baby Sally, Katie F., Max, Reese Cup, Tyler, Katie Bug W., baby James, and a host of others. We decided we could easily burn the house down, so I lit three tiny candles for my three boys (the first three mentioned) and one big candle to encompass all the angels. I pray they saw the candles flickering from heaven and knew how many people here on Earth love them.

Today also marks 18 months since Christopher became an angel. Such a landmark in time. 18 months. He feels so close, yet so far away. Every day that goes by seem a day longer than when I last saw him. However, I must remember that we will really truly be together one day, and every day that goes by is a day closer to when I get to see him...

When Katie was born and came home from the hospital - she slept. Her sleeping scared me to death. I would call my girlfriends in a panic, "She fell asleep again, I think she may be sick or depressed.." They assured me that babies do sleep and this was all normal. I'd get off the phone with them feeling wary, but trusting and praying they were right.

You see Christopher NEVER slept (part of the syndrome). I thought all babies stayed awake for 20 hours a day and only took one 15 minute powernap (although Katie is starting to trail close behind with the power naps).

When the hematologist told us Katie no longer needed to see him I was thrilled, yet terrified. This meant Katie would only see a pediatrician. One doctor? Could this be right, can one doctor handle a child? What about a geneticist, orthopedist, gastroentrologist, and ENT we had with Christopher? This doesn't include our visits from hematologists, neurologists, dermatologists, nephrologists and cardiologists during transplant. The thought of Katie only having to see one doctor was a radical concept it took me a while to embrace. Much like new parents we were starting over again, starting to find a new "normal" for our daughter, one so different than the "normal" for our son. I have come to the following conclusion:

What exactly is normal? What is this image of the "normal" family everyone tries so hard to live up to? I have realized each family has their own "normal". I think people often try to live up to some misconception of a "normal perfect family." Is normal 2.5 children with 1.3 pets per household?

I often worry about how I will incorporate Christopher into Katie's life and into any future children's lives we may have. How do I incorporate my dead son, their brother, into my children's lives in a "healthy" way. Going to the cemetery every Sunday after church will be her normal. Putting flowers on his grave, and giving his picture a kiss will just be what our family does. You know what? That's OK. It's OK because not every little girl will have a guardian angel watching over her. Not every family will find a feather at their feet and know it was really sent down by a true angel from heaven. I don't believe in coincidences anymore - I believe in Christopher.

For that ten minutes every week when we go to visit Christopher our pain will be seen. The rest of the week we will live with the heart ache and pain, the kind that truly rips your soul out that no one will see. I think people see us now and think we are "over it" and have "moved on" because we have learned to smile again. I often look at others now, strangers on the street, and wonder what their pain is, what their story is. Do we all truly have our own different stories? Or do some have more "luck" than others in life and never experience pain? Another one of those questions there aren't answers to. Whatever it is, I hope people learn to cherish life, love, and their health. In one second our foundation can be gone.

The past few months I have been off with Katie have been good and a blessing in disguise. It has allowed me time to think, time to figure out how to be a mom to two children, one who lives in heaven. I have had time to think about our experience at Hopkins, the horror, the pain, and yes even the occasional moments of joy and kindness that came into our lives. Our hearts have been remolded.

It is now time to move onward. It is time to be "a new different me" again; a mom, wife, nurse, forever graduate student and connoisseur of funky jewelry. I HOPE to start a new job in January (or sooner). It will be hard explaining my situation, but I am fortunate some of my former co-workers will be at my new hospital. I HAVE to start a new job, & new graduate studies; because I have a new baby. It is who I am. After all, I am a mother to two children, one who lives in heaven and one who is on Earth - mothers don't have any other choice but to move onward for their children.

Katie celebrated her first Thanksgiving with snow on the ground in the mountains of New York. After the lasagna was eaten (remember Joe's Italian), and the relatives left the reality of the day sunk in - again no Christopher. Driving to New York, I wished more than anything that both my children were in the back seat fighting and yelling at each other. I wished they were playing with each other and could be best friends as they grew up. I wished for Christopher to be healed, here on earth with me. We don't always get what we wish for, in the way we want it. He was healed, just not in the way I desired, however I must be thankful for his healing and no longer suffering.

My grandfather almost died this week. I got a phone call last Sunday, and was literally packed and in the car in less than 10 minutes for the longest four hour drive of my life. After a week in the hospital, a pacemaker, two hospitals in two different towns and a cardiac catherization, I am happy to say I just got off the phone from hearing his beautiful voice talk about the Virginia Tech game - our Thanksgiving Miracle. My parents and grandparents spent the holiday in the hospital. How do you be thankful when you spend Thanksgiving in a hospital? As our minister said today during a beautiful service (in summary) - hope and relationships are some of the most important things in life...

-having the honor to have relationships with others in life. It is through our family, our friends and those we meet in life that we realize how to live.

-my grandfather was in church when he passed out, where he was attended to immediately by an EMT and doctor. He was singing the last hymn, and the spirit surely moved him....

-being the mother to two wonderful children. I have a "different" relationship with my son now. It's not a relationship anyone can see or understand. It is a relationship built on love in my heart. It is a relationship I work on every day.

-everything. Life is truly good. Life brings pain, it also brings joys. Katie is starting to "talk" now, and it is the most beautiful thing I have ever heard.

-not understanding. I don't understand suffering, or why children suffer and are sick. I certainly don't understand why children have to die and leave their parents. I still have "flashbacks" to Hopkins. My mind shut down after Christopher died. I was giving Katie a bath and had a flashback of giving Christopher a bath in the Children's house. I just have to go on and hope and pray I will see him one day. Maybe it's better not to understand everything.

-HOPE. Hope one day no child will have a terminal illness and suffer from this horrible disease.

I was walking the dogs today and in one of the trees I found a white feather. It was a big feather, all white and fluffy. I always like to think of the feathers I find as feather's from Christopher's angel wings. That sweet boy - always giving me hope and reminding me he's close by.

Ms. Katie has been keeping us on our toes. She has reflux and is also already teething. She's now 14 weeks old and in perfect and wonderful health. Our last visit to the hematologist was wonderful and he said we don't have to come back to see him. Yeah! She was also diagnosed with a small ASD (atrial septal defect), however we will go back to the cardiologist in February and feel confident it will close. She is a beautiful girl, and we love her so much. She has a beautiful crooked smile and it warms our heart and makes us realize how lucky we are to have such wonderful children.

Joe and I will now be going down new career paths. Joe has quit his job, and has started his own company full time. He's been working part time for years building a Technology Consulting Company. We yet again reached another crossroads and had to choose to go down another new path.

As for me, I'm just moving along adjusting to all the change. After loosing Christopher, change is so difficult. Moving away and on from people or places that knew Christopher always feels like a threat to loose him anymore. Even Joe switching jobs felt like a string cut from our ties with Christopher. After much prayerful consideration I decided to change my graduate program and will be pursing a different graduate track. I'm even not going back to the same job I knew and loved, one I had cherished for four years. Due to "political reasons" I'll be working in either a different department or hospital (if any of my co-workers read this, PLEASE e-mail me, I miss you).

The thing I am still learning is nothing can take me away from Christopher. Not new jobs, new places or new things. He still continues to surround us with his presence and his love. Today at the cemetery he gave me yet another incredible sign to let me know he is well taken care of. Having the past few months off has actually been a blessing and allowed me to think and reflect on our time at Hopkins and the time following Christopher's death.

It's a good thing the picture was taken before Tech lost to Miami yesterday or else there would be tears!

I bet most people don't know what today is. It is the day Christopher was diagnosed. I walked around in a haze today thinking about how much our entire life changed in one second.

There is no way in my wildest dreams I could have imagined the turns life would have taken us. I would never have guessed the experiences, pain or way my life would have changed. When your child is diagnosed with a terminal illness and dies, the world stops.... a new world begins. Yet, somehow you go on living, and must work everyday to combine the new and old worlds, to create a "normal" world somehow.

When I graduated from Nursing School my job was on a Hematology/Oncology floor. I went home crying everyday, the patients broke my heart and I quit after six weeks. I never imagined I'd live on an oncology floor for over 6 months with my own child. I now feel more comfortable around children without hair, than children with hair, they are the most beautiful children in the world. Even my own daughter, Katie, is bald!

Our house is being filled again with love from Katie. She continues to constantly amaze us

and has brought a light back to hearts that have been filled with darkness and sorrow. I slowly feel the "old me" returning. A different "old me", one that can never be the same, but returning none the less. When Christopher died, we thought we would die the pain was so intense. Katie has given us a reason to live again.

She is getting big (at 8 weeks she is almost 10 pounds). We still have our share of doctors appointments and blood draws for her spherocytosis. The cardiologist found a very small

ASD (Atrial Septal Defect), however we are all very confident it will close with time. Her "tummy alarm clock" goes off without fail every 3-4 hours, and she loves her bottle!

Christopher has been keeping himself very busy in heaven, and I have the most amazing miracles to share!!!

Happy Birthday to Me! The end of August was my birthday, it was the BIG one! 3-0!!! On every holiday and special occasion I make the same prayer, "Christopher I miss you and love you so much. I know you are busy in heaven playing with all your friends, but if you could give me a sign, I would love it." On my birthday we were driving to dinner and I told Joe how bummed I was because I hadn't gotten my sign. We had gone to lunch, and the cemetery and I didn't see a butterfly, no sign. Joe said he had seen one, so I just sighed and figured Christopher had given me his sign through Joe, he was probably busy playing. We got to the restaurant and when the manager brought my food he said, "You're Paige, you are Christopher's mom". The manager is a wonderful angel who attends church with us. He just so happened to be working that day. He went on to tell us how he was there the day Christopher was baptized, and the day his cross was dedicated at church. He told us how he prayed for us. I think my mouth probably hung open for 10 minutes, he was my "sign" sent by Christopher! It was the best birthday present I have ever gotten, it made a perfect day. Since that encounter my heart has felt lighter and more free. I am so grateful for my amazing present.

Happy Birthday to Joe! Happy "1st Day of Church" Katie! This had been a very difficult "Hurler's week". We learned this week there are no longer any labs in the United States that do prenatal/CVS testing for Hurler's (MPS1). This is devastating news to all parents who are carriers of this gene, and I've taken it hard. I feel this disease has knocked us down again.

Today was the very first day we took Katie to church. She wore an extra special outfit (see above) and cried almost the whole time! (Thanks to Mrs. Claudina for the beautiful outfit). A package had been delivered for us at the church earlier in the week. I opened it before service (as Joe was walking the crying baby) and was awed at what it's contents held!

Out of the envelope fell two CD's, a letter, and Christopher's obituary that was placed in the Washington Post after he died, over a year ago. A jazz musician from Maryland had just happened to read the paper the day his obituary was placed. Christopher's picture touched him so much he wrote a song on his new CD and called it "Christopher's song". We have never met this person, and he probably doesn't even know this website exists. He just saw Christopher's picture in the paper and decided to write a song. The chills that I got were incredible!!! I couldn't believe it!!! I started running around showing everybody, even the pastors. What a miracle this was!!!

At the exact same time I was opening this letter, my mom was sitting in her church, two hours away, praying to Christopher to help my grieving heart, to let us know he was OK. What a wonderful gift this musician gave us. He will never know how much he impacted a grieving families heart. This Wednesday is Joe's birthday, I think this is an early birthday present from Christopher.

We went to see him today like we do every Sunday. I took a little plastic guitar and layed it at his grave, our son is so incredible, he sure does ROCK! (I actually use to play jazz for him when he was an infant). I cried with joy at the cemetary for the signs he had given us to let us know he was ok. For the first time I am beginning to feel a tiny amount of peace. I am so thankful to have a son who is still trying to take care of us.

I was on the oprah.com website tonight and saw a story idea for "unlikely heros." I wrote Oprah to tell her about my hero, Christopher. In addition to Christopher, my hero's are all the little children who fight the biggest terrorist of all, childhood disease. Everyday thousands of children battle against genetic disease, cancer and illness. These little warriors are often forgotten about, however they help teach us to live in this world with love and grace. Let's get these little heros the recognition they deserve, if you have time please write to Oprah to tell her about these wonderful soldiers. Together we can make a difference in these kids lives.

I received an e-mail from a wonderful angel in Portland, Oregon. She read about Christopher Kurls boxes, and is taking them to her local hospital. Yeah! I can't believe Christopher Kurls boxes will touch children's lives on the west coast, I am so honored.

Our house has been a little chaotic lately. We find the beagle begging for "negative attention" and stealing the pacifier. She will come around the corner with Katie's pacifier in her mouth at least twice a day. At the ripe 'ol age of 5 weeks Katie has entered into that childhood tradition of COLIC! Despite occasional fussiness she continues to fill our lives with light and joy. She has taught us the beauty of this world and how to live again. We feel so blessed and honored to be her parents, we fight over who will hold her, who will change diaper etc... I hope every parent out there that has a child realizes what a blessing they are, and how in a second life can change forever.

Many people will ask me "What I am going to do about Christopher now that Katie is here?" Well, he is still my child, that doesn't change. Last week, early on a Saturday morning about 5 am, I was giving Katie a bottle. She started "laughing" and had a big smile on her face. I asked her if Christopher was tickling her toes and she kept on laughing. After that I went outside to walk the dogs and the most beautiful butterfly flew up to me. It circled around me twice, and flew in and out of the trees. See, he's still here.

A year and a half, that is how long Joe and I have waited to bring a child home. We left for Hopkins in January 2004, and never got to bring a child back into our home until Wednesday night. We got to bring Katie home from the NICU about 9 pm on Wednesday. The house has felt so empty, so incomplete and lonely. It is finally a home again, its been a long 19 months.

Katie is such a great baby and doing wonderful. After 8 days in the NICU she came through her transfusion exchange, and got off her TPN (liquid food that goes into her veins - Christopher had the same thing), and antibiotics like a champ. We would have been home sooner but she kept "forgetting" to breath when she was taking her bottles. This was causing her oxygen saturations to decrease. We go to the pediatrician every other day for bloodwork and checkups. We are still watching her bilirubin counts and Hemoglobin, and being extra careful because of her blood condition. We'll see the hematologists in about a week to start dealing with her spherocytosis. I'm so proud of her for all the hurdles she's had to overcome in just 11 days of life. She's almost 38 weeks gestation (I had her at 36 weeks)and hardly cries and just wants to eat and sleep. She doesn't even cry when the doctors examine her or take blood. She's so little and so precious, she's just 5 pounds, 8 ounces.

Having Katie after loosing Christopher is a surreal experience. We feel we are picking up where we left off. Only this time we know more what we're doing and their is lots of pink! Joe and I were both in shock for a few days after learning Katie had a condition she would have to overcome. The spherocystosis is manageable, but will require constant monitoring. We didn't think lightening could "strike twice". But, as with everything else, it is just a matter of perspective. We just accept it, do what we have to do, and keep on going. We will not find an answer, their is not one, it is a waste of time to dwell on "why" when we are so blessed.

I've been having a difficult time, and have never had this type of pain getting over surgery. It's taking me much longer to recover, it's probably because we've been at the hospital almost every day, a few times a day. We want to thank everyone for the beautiful cards, e-mails and dinners. I apologize for not having returned everybody's calls and e-mails yet.

Christopher was alive 410 days. Christopher has been gone off this earth, and an angel in heaven for over 410 days. The days he has been an angel, now outnumber the days he was alive. When I hold Katie (which is all the time) I sometimes see a big smile come over her face. She giggles a little and falls back to sleep smiling. Babies are the closest thing on Earth to heaven and God. When I see her smile I know her big brother in heaven is telling her jokes or tickling her feet. I know he is trying to communicate to me through her, her smile is just too big and her giggle too cute. I'm blessed to have two wonderful children.

Kathryn (Katie) Paige Migliozzi came into this world on Wednesday July 20, 9:45 am weighing 5 pounds and 15 ounces at 36 weeks gestation. I had been contracting and her heart rate was decreasing, she was also not moving much. The doctors put me in the hospital on Tuesday, and I had a c-section on Wednesday morning. The doctor later said it was a good thing I had a c-section when I did, the cord was wrapped around her neck and causing the decelerations of her heart rate. Like her big brother, Katie took a trip to the NICU as soon as she was born.She had low blood sugar and was breathing rapidly. I got to hold her for 2 minutes and than she was wisked away.

As the day progressed more bloodwork was taken and she was stablized in the NICU. On Thursday the doctors found her bilirubin level to be dangerously high. Bilirubin is the breakdown from red blood cells. Her level should have been between 4-5, hers was measuring almost 20. This was causing her to be extremely jaundice. The doctors knew this indicated a serious condition and kept running more bloodwork. The neonatologists also felt we should do a full body blood exchange tranfusion as soon as possible. This involves taking out all her blood to get the dangerous bilirubin out of her system, and putting in new donated blood. The doctors put a central line in through her belly button. They would take out 10cc of her blood, than put in 10cc of fresh blood. This lasted a few hours, and the doctors"exchanged" almost 400 cc of blood.

On Friday the hematologist came to talk to Joe and I and told us she had a condition called spherocytosis. It's a blood disease where her rood blood cells are shaped like spheres instead of circles. This causes breakup of the blood cells (causing the high bilirubin levels), anemia, a low immunity and some other problems. We will have to get blood drawn probably weekly, and she will be on antibotics and folic acid everyday until she is at least 10 years old. She may also need a spleenectomy and we will have to follow her very closely. We are also having a special hearing test done called a BAER test, the high levels could have affected her hearing.

To say the least, Joe and I were stunned. Another child in the NICU, who we can't even hold, it's the worse feeling in the world. She wasn't even 30 hours old and needed a full body blood exchange transfusion, and at 48 hours we were given ANOTHER diagnosis. We didn't think lightening could strike twice, it was a lot to absorb. Spherocytosis IS not life threatening, and will not impact her learning or development. Katie will need to be monitored very closely and already has some wonderful doctors. She is a fighter and already has her central line out, is off of oxygen, and is sunbathing in the NICU under the jaundice lights. Her bilirubin levels are coming down, and we hope to get off antibotics today or Wednesday. This morning she took 2 ounces of formula!

I was discharged yesterday, and she probably won't be able to come home until Wednesday or Thursday. The hospital stay was bumpy, and I'm recovering from some cardiac problems and pain. It killed me to come home AGAIN without another baby. That was the thing I was most conc

erned about, having to leave another child behind. It seems so surreal. We're shocked to have two children, both of whom have had to fight since day 1. I can't make sense of this diagnosis, it's no where near the severity of Hurler's, however no parent ever wants to see their child hurt at all. What I do know is we love her so much and feel so honored to be parents of yet another beautiful special child. Everything she does will be so much sweeter and cherished. We are already starting to do research to figure this disease out, and I've drafted out a medicine schedule for when she will come home. We are blessed to have so many people who will be apart of her life, and love our little girl.

We have passed all of our "first" days. The last day we had to get through was June 17, the day we buried Christopher and put our baby to rest. After the first year time is still weird. I think there is an unspoken rule after a year life gets back to "normal", but it doesn't. We are still in suspended animation and the world still spins around us. Their is no time limit on grief, it's just there. I read a poem the other day about how "we never intended death and grief to be always be constantly there. It's just how life has worked out."

Christopher's little sister is arriving in a month (although I am begging the drs. to move the date up). I keep loosing weight, and she keeps gaining. I'm 33 weeks and today on sonogram she weighed 5 pounds 13 ounces, with an estimated weight of 8 pounds on delivery!!!! I bet Christopher and Katie are laughing there heads off at me. Thank goodness I'm having a C- section.

Christopher will be making his "screen debut" on the Discovery Health channel in September!!! A producer from NY found this website and contacted us about a new show called "Mystery Diagnosis" starting this fall. They are doing a segment on Hurler's Syndrome, and asked to use his picture. We are so excited! We hope it helps another family out there, or reminds doctors what to look for so these kids can get diagnose

d sooner. We are thinking about having a "red carpet" party. We'll let everyone know when we find out the exact date.

Christopher's "angel day" came and went. We want to again thank all the people in our life who blessed us with cards, e-mails, flowers, phone calls, and care packages. Each act of love truly changes our lives in ways that can not be explained.

Last year at this time, I would always think: "we were doing this last year, or we were at this point." Now everyday when I wake up I think, "last year at this time Christopher was an angel." It's like a double sided coin.

I still try to find peace with knowing he's in heaven and out of pain, but sometimes my heart wins out over my head. I had to be admitted to the hospital for a few hours this week due to dehydration, so I've had a lot of time to "think". I have written a new piece for the "Inspirations and Hope" page:

I'll close today with the poem below. I read this often and think about the words. It's taken me a long time to accept what the words say, and I have to be constantly reminded of them

One year ago today our lives changed forever. Our hearts were shattered and broken, never to be repaired. When Christopher became an angel and went to heaven he took a huge piece of our heart, and we will never be whole again until we all meet in heaven one day.

The last day of Christopher’s life plays over and over and over in our heads. Everyday it is a constant video we are always reliving. Some days I think I understand why he had to die, most days I don’t. The one thing I can always look back with pride and happiness on is we gave him a beautiful death. He was in my arms, with Joe holding his head. He was surrounded by his grandparents, aunt and uncle, pastor, and all the nurses and doctors who had worked so hard to save his life. Our cheerleader Nurse Becky was there. All his girlfriends were there. I know Christopher felt all the love he was surrounded with as he became an angel. No matter how sick he was, we always wanted him to feel the love that surrounded him and I believe he transitioned into eternal life feeling a strong sense of love. Our final gift to him.

I can’t believe it has been a year. Sometimes it feels like an hour ago, yesterday and ten years ago. As one Hurler’s mom wrote me this week, we survived.

So to our beautiful angel Christopher. We love you more than life itself. We ache every second we breath just to touch you one more time. We pray you are free from pain and suffering and God is holding you tight until we can get there.

*We will be placing a "In Memoriam" in the Washington Post tomorrow, Sat. June 11, it will be in the Death Notices section*

I miss my chair. The old red one with the holes and broken springs I use to sleep in at Hopkins. It was the "fancy" type that was a million years old and pulled out to "recline". Sometimes it was so heavy I would have to have help just to pull one cushion out, other times it would fold up on me. Every night I'd grab a sheet out of the linen closet and put our Virginia Tech blanket we take to football games on top of me. It was like sleeping every night on a wonderful piece of plywood. Our comfy bed at home seems weird. With the soft sheets and warm comforter, with the dog curled up and snuggling at our toes I can't sleep. When Christopher went on "strike" against his crib we'd let him sleep in the chair. I'd hold him like a football all night so he didn't fall or move too much. It was the most comfortable sleep I ever got.

When you live in a hospital for 6 months, a person's sense of reality become warped. Instead of road rage, or long lines at the grocery stores, you get upset if someone takes the "good bench" for you to sleep on. There was a certain bench in the waiting room of the PICU all the parents wanted. It had three cushions in it and was highly sought after. I remember making my mom sit on the "good bench" one night starting at 8 pm. There was no way I was sleeping on the table under the window again. One night I even found an old stretcher to sleep on for an hour. It was just me, my cell phone, and a noisy hallway on a broken stretcher. I remember a janitor came and brought me a sheet because it was cold, and layed it on top of me. That janitor probably doesn't know that random act of kindness helped mold my life and I will never forget him for that.

Those will always be some of the best days of my life because no matter where I was, I had Christopher

I found this picture of Christopher this weekend when I was going through his daycare folder. It makes me smile to see his laughing face. I can hear him giggling.

I prayed for this child and the Lord answered my prayer and gave him to me. Now, I give him back to the Lord. He will belong to the Lord all his life.

Today was a bad day. I must constantly remind myself to stay focused and remember he is safe and happy in heaven.

The past few weeks have been extremely difficult. However, I believe Christopher "visited me" in a dream last week, and it has given me such comfort.

One of my friends told me I need to pray for peace. Since Christopher is never off my mind for a single second, I pray every second of every day for something to help my pained heart. I have been praying the past few weeks for a "sign". Just something to let me know he is OK. Usually he will send a butterfly or his puppy will come over at that exact moment to lick my hand. Neither of these had happened for quite a while and I was very bummed. Last week all that changed.

I dreamed I was at his daycare volunteering. His teachers told me to go rock the baby. The baby was Christopher! Long story short, I got to hold him and love him. I could physically feel him in my arms, he was smiling. He's come to me before in a dream and he had the same smile. At that exact moment the cat and dog decided to get in a fight across our bed and I woke up. For the past week, I can still feel him in my arms. I truly believe Christopher visited me that night. Some people may chalk it up to crazy pregnancy dreams, but I don't believe I can discount it as a possible visitation. I think our love ones try to contact us, and we must keep our minds open so we don't miss their signs. I have to keep my mind open he was trying to tell me he was OK - it's all I have for some piece of mind.

It has taken us almost a year, but this weekend we finally put his things away in his room. It was hell. Every blanket, every little outfit, held some memory. I thought I was dying all over again. The tears flowed and flowed. There were even things from the funeral I hadn't had the courage to put up yet. I held each little piece of pajama or blanket and rubbed it to my face, and smelled it to see if it still smelled of Christopher. Some of his blankets still smelled like him and had stains from the hospital. We saved everything, nothing got thrown out. I did learn an important fact in cleaning out his room.

I had been so scared to clean his room, I had been putting it off and dreading it. I think I feared if I put

up his clothes and blankets, he wouldn't be here anymore. After his things were put away, I almost felt a sense of peace. He is still "here". He didn't go anywhere! He still lives in my heart just as strong as he did before I put up his things up! His clothes, blankets, toys, they are things. They are not Christopher. Christopher lives in my heart. Nothing, not time, not possessions, nothing can take that away. He is still my life and has that broken piece of me in heaven with him. I'm still his mama. I think about what it will be like to see him again, and live for that day.

Christopher left me one nice surprise. As I was going through his folder from daycare I found a picture of him I had never seen before. He was laying in one of his teacher's laps, grinning like a fool at all the ladies around him. That's my baby..........

Next week he will have been an angel for one year. I can't believe it, it feels like yesterday and forever.

Last year for Mother's Day Christopher gave me a wonderful gift, a clear chest x-ray! We were in the PICU, and use to get x-rays at least once a day to look at his lungs. I remember walking around, grinning like a fool. When all the nurses asked me if I had a nice Mother's Day, I was so ecstatic, a clear chest x-ray for the day! It's the best present I ever got.

I've thought for a long time about what to write today. The days leading up to today were so stressful, however the day passed with a certain peace and calmness. A good

friend told me to pray for peace, I have to remember to do that every second of every day. Once again I want to thank all the wonderful people who sent cards, e-mails and called. Thank you for remembering I'm still a mom. This was yet another "1st anniversary" milestone to surpass, and a day filled with much reflection. You reminded me I am still meant to be in this world and somehow manage to keep living.

I was at Hallmark this week looking for a card to send a friend, who also is a mom to an angel in heaven. There were none, I was furious. People forget even when you have a child who dies, you are still a mom. Their were cards, "to mom from dog", "to mom from cat", however, the cards people forget about are all the mother's out there who have angels.

The feelings and natural mother's instincts don't leave. I still worry about Christopher's safety, his happiness, and their are days when my arms physically hurt so bad I can hardly move them. They hurt because they are longing to hold a baby. I can't imagine what it will feel like to hold a baby again in 12 more weeks when Christopher's sister gets here.

I've gotten a lot of e-mails lately, with a poem that talks about "before I was a mom". Well I have my own version today, for all the mothers out there, who have children with an illness or disease that makes them special or unique.

*knew the beauty of the world, and all the special people God puts in it to take care of us. There is so much goodness and love, we have to open our eyes to see it or we will miss it.

*been so proud to be trusted with a little soul, so fragile and special, yet so strong. I am so proud to be the mother of a special child. Christopher taught me things about life, I could never learn in a million years

*knew I could change a central line dressing, clean up puke and keep on smiling and singing at the same time. I could also help draw blood from a central line in my sleep. One of his nurse's told me she remembers me getting up from my chair while sleeping, turning him upside down while she got blood and collapsing in the chair about 4 am every night (his central line didn't work well and we use to have to almost put him on his head).

*knew my child vomiting would become as routine as brushing one's teeth. Christopher would pull my shirt down and precede to vomit down my shirt and back everyday. I was like OK, whatever... just one of those things. I never got "stressed out" about nap times, dirty clothes, being tired etc... It's just clothes, they will be there the next day and the next.

*knew that my friends and parents are truly as important to me as the food I eat everyday, they sustain my soul and keep me going, without them I wither away.

*imagined I could love my husband so much. When you have a child the love for your spouse deepens, when you have a "special child" you are truly partners in saving a life.

*realized the important of bubbles. I still keep "emergency bubbles" in my cosmetic bag in my purse. Bubbles are wonderful when undergoing procedures that involve massive amounts of screaming, IV's, or long waits in doctor's offices. I think I will always keep emergency bubbles in my purse. It's just my thing.

This poem was sent to me by a beautiful mom of a beautiful little girl. I feel this describes my life. I dedicate it to anyone who is just trying to survive a certain situation in their life or who has lost a loved one. We are all survivors.......

...And so it came to be, the beautiful little boy with blond hair and blue eyes was born to the mama and daddy who didn't know if they could have a child

...the world fought with him, people prayed and prayed, fundraisers were held, meals were made, and his mama and daddy got on their knees everyday at the alter and asked God to heal their little miracle

Happy Birthday beautiful baby we love you so much!!!!!!!! We hope you are having a wonderful day in heaven. We prayed to God all week and asked him to give you a birthday party, the best party ever. We hope you have big red balloons, a cake with Elmo, and all the banana yogurt you can eat!!

This week was awful - to be honest it was hell. The pain in our hearts, another reminder he wasn't here It felt like we were loosing him all over again. Christopher's first day of life was in the NICU, his first birthday in the PICU, and his second birthday in heaven. Such a bitter sweet day. With birthdays come hopes, dreams, laughs and giggles. I hope Christopher is finally having a happy birthday in heaven. Everyone deserves a birthday free of pain.

10/21/07