Reconciling the cost of travel...

Joe and I were married a long time before we actually started to spend money on traveling. We took a lovely honeymoon in 1999 to Las Vegas and then didn't travel again until 2005 with the exception of one trip that I nearly forgot, until just now, to Door County. But anyway, I digress. We would always decide that if we were going to spend THAT much money that there was something else we would rather own. Something that would last forevor instead of just spent in several days or even a week. And then, October 16, 2004 I was in a pretty bad car accident. And I can remember Joe saying to me that I couldn't die because we after all had never been sledding together and we had never been on a cruise. So obviously I did not die, and on October 16 2005 we went on a perfectly timed wedding cruise to the Bahamas with Royal Caribbean. Joe's cousin was married and many of Joe's family was in attendance. We are pictured here with Chad (Joe's brother) and his lovely wife Heather. Only while we were out to sea we got hit by Hurricane Wilma. Hurricane Wilma was the most intense hurricane ever recorded in the Atlantic basin On the bright side our 3 day cruise got extended to 4, as we could not return to land...Florida had been evacuated. On the not so bright side, nearly everyone on the ship threw up. On the brighter side for me, I did not. But despite Hurricane Wilma, and maybe even because of Hurricane Wilma, I caught a bug for traveling...and I realized that it is absolutely worth the money. That you are in fact buying something that lasts forevor. A memory. Even if its the memory of vomit in the elevator.

But my kids are too little, they won't remember it!

The excitement of this year's trip makes me look back on previous adventures that we have experienced. Last year, our son was just 18 months old and we took our first big family vacation. Again, with the help of our brother and sister in law's time share we took off for beautiful South Carolina, Myrtle Beach! We actually were so nervous about this trip that we debated and debated about whether we should ACTUALLY go at all, practically right up until the minute we left. Because we had so much baby stuff to take (we had not yet learned about a neat baby travel light service from the Williams family blog) we decided that driving was the only real option. Directly before our trip the transmission gave way on my forevor unreliable Volvo, and so we tentatively set out in what was a new "used" car. Given that we had such a wealth of experience with cars breaking down...a story for another day...we were a little nervous about that aspect. Luckily that was just wasted energy. It was however a very long 20 hour drive. I nearly abandoned Joe about Tennessee. Someone was really always crying, and sometimes it was me! We would drive until someone either threw up or threatened to bail out. By the time we got to South Carolina we were nervous about whehther the trip could really be worth it! The time share condominum turned out to be so lovely that I nearly shed tears when I saw it! We tried to keep our nap schedule the same and eating the same. We ate mostly in our condo, with only one meal in a restaurant where Will promptly threw up all over me while Joe was at the buffet. Aaah good times. We spent the week visiting local atrractions, the acquarium, the alligator park, the ocean, and the pools at our time share. I hear people all the time say that they haven't yet taken family vacations because they are waiting for their children to get older so they will remember it. I am here to say that Will is probably not going to remember that first time he saw the ocean...but I will NEVER forget how he looked when he saw it. The experience was primarily for me, and I feel like that's well worth the money. I still have the photos of that trip revolving around on our digital picture frame, and I never tire of looking at them!

14 days and counting until we go to the World!

Well the packing has begun. I have a staging area where I have begun to pile up all the things that we are going to need. I've been breaking in my new shoes and nagging Joe to double check if he needs anything new for the trip. I've been working hard to prep Will with the knowledge of all things Disney. We've watched all the old fairy tales and I've used the tivo to familiarize him with Little Einsteins. I'm nervous about the heat and the crowds but I think that's a given at Disney World...in June. Another family and their three daughters are going to be with us for a lot of our trip and this brings an added element of excitement. I figure somebody will always be crying, I just hope its not me! LOL. I have been to the World once before when I was 13 and my brother 10. I remember having a good time in what was only Epcot and the Magic Kingdom then. However, my parents maintain that I was a grump the whole time. This is perhaps the nature of being 13?

I am most looking forward to our meal at Chef Micky on Tuesday night of our trip. The Toy Story Mania excitement at Hollywood Studios, Mickey's house, and of course the lighted parade and fireworks at the Magic Kingdom. I have about 2 or 3 musts for each day, everything after those couple of things is gravy!

The Magic of Healing

In the last several months my husband and I have found it necessary to look for ways to heal. Anyone who knows us, knows that one of us is a lot more verbal than the other. While Joe has found healing in home improvement and video games, I have found healing in reading and vacation planning. Initially I found that I was really only interested in books that dealt with grief and or babies. My librarian friend recommended The Year of Magical Thinking, and then later I read House Rules. Both of these books helped me to see that I am not alone. And then there is vacation planning. Upon our return to real life, Joe's brother and our sister in law immediately let us know that we needed to take a vacation. They generously suggested that we use their time share to go somewhere that would heal our hearts. Where else we thought, than Disney World? We discussed driving, we discussed 2 days or 3 days or 4. Ultimately Joe looked at me and said, "we've been through hell, we're going to see Mickey damn it." So in just about 17 days, Joe, Will and I are flying to Orlando Florida for seven days in the sun. We have a five day park hopper pass, reservations for character meals, and an itinerary that leaves little time for anything but magic. I could not be more excited. Just after planning this trip we ran into some local acquaintances that I now dare call friends, who are what we will refer to as the Disney Experts. The Disney Experts inspire and encourage everyone to find the magic in the World. I have become addicted to their blog and live vicariously through their magical adventures. I have found their spontaneity and joy in life and travel and family to be a reminder that there is magic all around us and that it is important to not forget that; especially when you are down and out. The Disney Experts have inspired us to book a second trip to the World for this coming November so that we might enjoy Micky's Very Merry Christmas Party, and even a Disney cruise for November 2011. While there are ups and downs, sometimes within an hour or a day or a week, I am finding that friends, hobbies, fun with my family, and anticipating good things to come help make each day easier.

Our Lauren

I am not afraid I said to the video camera. Reassuring my husband that I loved him and that it didn’t matter if he went into the operating room with me. I have the doctors and the nurses I have come to know, and that anesthesiologist who I wonder if he might actually be stoned right this very moment. I do not need you to be there with me and to be grossed out by the operation, I need you to be solid and happy to see me in recovery. I need you to be there when they take the baby potentially to the NICU, so that you can videotape them weighing her; so that I won’t miss a second. I expected a healthy baby daughter. Our baby girl was supposed to weigh a little more than 4 lbs, and she was 37 weeks. Small, but healthy. We had endured a lot during the pregnancy, I had tested positive for an antibody at the beginning of the pregnancy. We knew that antibody could cross the placenta and that it could cause problems if it did. But we understood that our biggest enemy was premature birth, that if they could bring her to full term that she would be all right.

The moment they took her from my belly I knew that things didn’t seem quite right. I couldn’t put my finger on the fact, that I never heard her cry. I never heard her cry, ever. They took her to another room, and the sweet anesthesiologist who talked at my head the whole surgery reassured me that this was not such an uncommon occurrence with c-sections. A nurse returned to the operating room for something and Dr Hwang said assumptivly, “baby is perky” Nurse reported, “baby was intubated.” I realize in this moment my baby is on an ventilator. I return to recovery where Joe looks like he has been hit by a truck. He followed the team to the room where they were working on Lauren, and they asked him to down to recovery and wait for me there. Leave them to their work. They will come get us when she is stabilized. They eventually come to us and ask us for our consent to give her another blood transfusion. Why not, she has undergone 4 or so prior to her birth. We do not realize that this is our one and only moment to say no. I ask the nurse if Lauren is going to survive. She said, “I don’t know, I know she is one of the sickest babies in the NICU, but that this consent right now is her golden ticket.” Joe signs and they leave us alone for another 90 minutes. Eventually, they take me from recovery to where my baby is waiting. We will baptize her in that moment. The first time I see my daughter, we are baptizing her because she may not live. She is dying. There is no moment where they hand her to me and I bond with her in that moment when I take her face in and I know that she is mine. There is, instead a moment when I look at her and I don’t understand what went wrong. Why it is that I expected a healthy baby girl and instead I am looking at a dying neonate. Her skin is covered in red blotches, she has a wealth of black hair. She seems to have my nose. I can not see her mouth because a tube is down her throat and tape covers the better portion of her chin, mouth and upper lip. I make myself take pictures of that moment, of us as a family. Because I still hope that someday this moment will just be ancient history. That they will get her stabilized and that we will go home and be a family and we will look back at this horror as a moment that we were scared and made us stronger. We do not smile in the picture. They take me to my room.

Sometime during that night I ask them to take me back to see her again. I throw up when I see her a second time.

Sometimes in the middle of the night I ask them to take me to her again. Joe is sleeping. I sit on a couch and fill out paperwork. I sign consents and give away my right as a parent to make decisions about her treatment. I believe in that moment that I am settling in for the long haul. Nurses don’t speak to me about her condition. Only that she is critical.
In the morning I ask them to take me off the IV, and they do. I talk to a nurse who is caring for Lauren, and I ask her to give it to me straight. She said, “she is not circling the drain, anymore.” She is critical but stable. What does that mean anyway, critical but stable?

On Sunday, I choose to check out of the hospital. I have been there little more than 2 days and I am ashamed that I am not able to just sit and stick it out with her for what I learn is going to be a very long time. But I feel useless next to her then unconsciousbody. I feel claustrophobic in the hospital and in her tiny room. I feel the need to get way as quickly as possible.

I go home Sunday and on Monday receive a phone call that my daughter has a diagnosis of CMV. What is CMV I ask...CMV is Cytomegalovirus. It is the number one cause of deafness, and cerebral palsy. It is the number two cause of mental retardation. It cases seizures, breathing difficulties, organ problems and death. It affects one in 150 births ranging in severity from mild to severe. Our baby was severely, severely affected; and had it not been for the intrauterine blood transfusions she would have died in utero. Some babies are born with no physical symptoms, mine was born with many though they are not visible to the naked eye in this picture. Our CMV is passed to your baby while it is in utero. Most of us will get CMV over our lifetimes, but it is only dangerous if we get it WHILE we are pregnant, for the FIRST time. Once you have been exposed to CMV it is not dangerous to subsequent pregnancies. If you have not been exposed to CMV prior to your pregnancy, it is crucial that you wash your hands compulsively. It is not recommended that you share utensils or drinking glasses with others. It is not recommended that you drink from drinking fountains. CMV is passed through bodily fluids like other colds and viruses, particularly from toddlers who attend daycares. It is critical that you protect your physical health while pregnant and that you asked to be screened if you become ill during your pregnancy. There is no treatment or cure for CMV. However if you realize that you have had a primary (or first time) exposure to CMV while pregnant you can make a difficult decision whether to continue or terminate the pregnancy. While one can never know how they would answer that question, I do know that I would rather have had time to prepare for the question.

Our daughter did not come home. And the months following our loss have been difficult. It is difficult to make my face match my heart. That on the outside I look fine, and yet I can not locate things like the grocery store when I am in my car. They tell me this is a normal part of grief. That your brain doesn't work as well as it should or did. It is difficult that people move on and that I know I never will completely. It is difficult to watch people become pregnant and to know that they are still not being screened for CMV at the doctors office.

It has been nearly four months and we are moving on. We think about the possibility of another baby, we look into our son's face and are grateful for the life that we have. My co-workers and neighbors and friends and family have loved me unconditionally. We are planning a trip to Disney World and planting flowers in our garden. I think about Lauren now, probably 50% of my day, and this is an improvement.