An Unexpected Email

So many things are going on with us right now, I still have so many posts and updates I need to put about our trip. I just started a new job on Monday, the transition is rocky as we expected, but we already see hints that we made the right choice for us. Tucker went back to school Wednesday, Chris went back to work after 12 days off (his longest vacation ever!). I promise I will update on all of that soon! But tonight I am posting about an email I recently received. From Tucker's birth I have felt that he was not sent here for me. I'm sure that is hard for people to understand, and it's hard for me, too. The first song I have on my blog playlist is "I Just Call you Mine" afterall, because I love the line "Everyone calls you amazing, I just call you mine." I would assume that most moms think their babies are for them. They take care of them, love them, know the most about them. Their babies want them the most, cry for them in the middle of the night, etc. Most parents eventually realize that their children play a much bigger part in the world than just as their child. It may take years or decades; Chris and I saw Tucker change people from the first weeks of his life. When we took Tucker home, we thought it was our time. But really, we had nurses at home, therapists at home, many doctor visits and hospital visits, and we continued to learn how many people felt attached to Tucker and saw his success and setbacks as very important to them. Tucker started seeing Dr K last January, and with his Mito diagnosis in July, we once again faced the reality that Tucker was never ours to keep; he had his own plan and issues he would face, we were meant to guide him along. As we attended his routine appointments back in Baton Rouge, we saw how every therapist and specialist took this diagnosis to heart; Tucker was their success story, then their puzzle they couldn't solve, and now a little boy with an uncertain future. While no parent wants their son to spend 9 months in the NICU, years on a ventilator, and get a life-threatening diagnosis, one of the things that has always brought us some comfort is knowing that somehow our story has helped others, even in a small way. One of the hardest things I have ever experienced was Tucker's baptism. It is a very bad memory for me, and something I really felt robbed of as a Catholic mom. Tucker was baptized at exactly 3 weeks old, we hadn't really been allowed to touch him up to this point, and then the priest put holy water on him, which really freaked me out. The rule in the NICU was that only 2 people could be at the bedside at a time, so we didn't invite anyone to the baptism. Mrs. Mia and Mr. Ricky happened to be leaving their visit when the priest showed up (that hospital didnt have its own priest, they had to call him in), so the chaplain invited them in. They said for baptisms they made an exception to the rule. If I had known that, I would have invited the whole family, at least his Godparents and all four grandparents. It felt rushed and just wrong. Now it is harder to look back, I guess because I am not sure how we will ever have First Communion (the kid eats nothing, let alone Communion! not to mention the fact that he will never be able to sit in a Religion class and learn what it means), so at least I would have liked to have his Baptism be done differently. So even though this happened over 4 years ago, it is one of the things that still hurts and I have a hard time thinking about. The reason I am bringing it up is that this week, I began a job at LSU. My former student email account was reactivated, and I opened my account to find tons of emails that had been sent since May 2009 when I finished graduate school. Well, over 99% of the emails were spam, of course. I clicked through many of them to delete them, but I came across one that was an actual email. It was from a NICU nurse who took care of Tucker, she sent it in February of 2010, almost 4 years after Tucker was born. He leaves a big impact everywhere he goes, and I got more proof of that this week. "Long ago I read Tucker's mom's story in the NICU meeting newsletter and it was so sad. Her post on the group site is sad, too, because it seems they had so long with no primary. Please tell them it wasn't for lack of having someone love him. I did, so much. I was not allowed to have a primary for a year after "graduating" from orientation as they want new nurses to be exposed to as many different things as possible, not staying with one baby for a whole year. I actually asked the charge nurse if I could take Tucker when he was brand new and they said no. I was the one who got the water for him to be baptised and was there just on the other side of the screen, praying he would live to go home with the family that loved him so much. My night shifts always included "rounds" to my fav babies. Tucker was one, as was his girlfriend. I just adored his parents. They were so good with him and you could tell he was their life. Sporadically, I could weasel my way into caring for him if Brenda or Lindsay wasn't there. Sometimes if they were busy with another baby and I was nearby I would get to play with him, feed him, get him to chill out and quit sending off the vent. I remember the feeling of panic when I found out the code being called was to his bay. I remember their tons of prescriptions on that last day, finding pharmacies to get the meds, printing out where the millions of doctors had their offices. It was crazy! But please, I want them to know just because he didn't have a primary at first, he wasn't forgotten, unloved, or not special to someone. From the first day I saw his scrawny little body I fell in love with him. I am sure he had other secret admirers as well. I've always wanted to tell her but didn't know how to contact her. Thank you!!" I just thought, "wow", on several of the hardest days of my life, this nurse was there, watching our family's love for our son, praying for Tucker and also loving him, and being part of our story. To explain this email a little, babies in the NICU usually have primary nurses, meaning one nurse who coordinates the baby's care, and everytime they are at work, they take care of that baby. This nurse is kind of the boss of that baby, so what she suggests, the other nurses are supposed to listen to. Most babies get a primary at birth or within 2-3 days; Tucker didn't get one for about 8 weeks. A primary nurse would have made sure we knew there was an exception to the rule for baptisms, and made sure that we got to hold and touch Tucker as much as possible (we didn't hold Tucker for 7 weeks, which is 7 weeks after we had started asking and 3 weeks later than we could have!!). His first primary nurse Lindsay had been on leave when Tucker was born; as soon as she met him, she picked him up as a primary. His night primary Brenda had another primary baby; once he graduated she picked Tucker up at night. I could never explain what a difference these two women made in Tucker's care; and it really hurt to know that Tucker had gone so long without a primary when I later learned that the basic rule was for all babies to have primaries within 2 days (I actually attended a meeting where they had a graph...most babies were 2-3 days, and there was this huge outlier baby who didn't get a primary for weeks, it turned out it was Tucker!!) So they actually held meetings about this, and Tucker's primary nurses spoke at it, and I really pray that since then no baby or family has gone that long without a primary nurse. The code she spoke of happened on December 22, 2006. Tucker was on the ventilator for all of his first year of life (except for about three weeks, then he went back on). Codes are pretty common in the NICU, but Tucker did not have one earlier because he was on so much support that worked to keep him alive (there were many times when nurses worked all night to keep him alive-but they never got to the point of calling a code until that night). When Tucker had his code, he had his trach for over 3 months, and he was on the highest possible vent support; yet he still stopped breathing. We found out two days later that his trachea had an odd pocket shape, so the pulmonologist prescribed a longer trach and Tucker started breathing much better. That was one of the scariest days of my life. It felt like the whole NICU was affected that day; apparently, they were. I also remember Tucker's homecoming day. It seemed like the whole staff came by to say their good-byes and wish us well. We knew that there was a good chance that Tucker would be back to the NICU or PICU for breathing issues, the nurses had seen many cases of kids going home with trachs only to come back in worse shape. So I just wanted to share this email; it serves as a reminder that in that hell of a place, the NICU, angels were there, sharing our pain. As I fight feelings now of not wanting Tucker to be on the path he is on, I look back and realize how many people he has touched, and how his life has already made such a difference. It makes being his mom and walking this path with him just a little easier.

Parent/Teacher Conference

On Friday I attended Tucker's Parent/Teacher Conference. Tucker is only 4 years old, but I have already attended many of these....none of them ever bring good news or warm, fuzzy feelings...the pride that comes with knowing our son "fits in" at school and is learning and progressing as he should. At least now I don't go to the meetings with the hope that I will hear something different...that I will leave the meeting with the knowledge that Tucker somehow "caught up" to other kids, like the doctors said he would....at least now I have the perspective that any improvement is a reason to be cheerful, as there are many kids who never improve...it still hurts, though!! For any of Tucker's therapists or teachers who read this, please don't take any of this as insulting. Giving us honest evaluations of Tucker's progress is a wonderful gift you all give us; each of you gives us many positive things to look at while also giving us the truth. But this was the first teacher's conference of this school year, the first conference in a classroom with 13 kids, half of which are neurotypical. As I've said before, I love the set-up of this class. The teacher and aides gear the class to the typical 4-year-old curriculum, and they put help in place for the kids who can't keep up, like Tucker. This way Tucker is not placed in a room with just kids with special needs; he has the opportunity to interact with typical kids all day, and be exposed to all that other 4-year-olds learn. Obviously, he can't do all this, so he also has the support to learn the things that he can handle. The other kids are still young enough that they don't bully or exclude Tucker, which is a concern we have for the future. For now, he is just another kid in the class, which I love. His teacher opened the conference by talking about how sick Tucker got. The other kids who went home came back in a day or two; Tucker missed 8 days of school. Chris and I knew that this year would be a trial of Tucker's immune system. As a former preemie, Tucker should have spent months sick, and any little bug that we caught, Tucker should have caught it much worse. This has really never happened! It has always perplexed us and his doctors; we just thought maybe since he spent the first winter of his life in the hospital (which would have been when he was most vulnerable to infection) maybe his body was exposed to so many bugs that his immune system figured out how to fight them. Last year Tucker attended preschool with 3-5 kids in the class for 3 hours each day. Tucker goes to many therapies, and other kids run around during his therapy sessions. Tucker also goes to many public places, like the carousel at the mall and Chuck E Cheese. His doctors haven't told us to avoid any of this, and this last illness really threw us all for a loop as Tucker is not sick very often. Well, I would like to think that this sickness was a freak occurence, and not just a sign of things to come. Tucker's teacher asked me what our plan is if every time Tucker gets sick, he misses 2 weeks of school. The truth is, Tucker NEEDS to be at school....he has to work twice as hard and twice as long to accomplish way less than the other kids. Because of this, each day of school he misses keeps him even further behind. As a mom, I know that Tucker and I have tried the "stay at home" approach to school, where the teacher comes to our house once a week. It is not enough! Tucker is developing by leaps and bounds based on just Tucker's baseline...but really he is much slower than the other kids, and having a homebound teacher just wouldn't help that situation at all. So my plan is: Don't get sick! I think that all parents are amazed by what their kids learn at school. As a parent, you are always worried about your kids, and when they come home knowing new things, it makes us proud. Tucker is learning his colors and different routines. His vocabulary is expanding rapidly-if only we could understand him! But when I got the last few class newsletters with the class activities, I knew Tucker was out of his league. The science section talked about inferences and observation, the math section was about counting to 10 and language was about learning letters. So that was the main question I had for Mrs. Amy: How does Tucker even fit in here? She said for times like that, they pull Tucker and 2 other kids out to the side to work on lower level skills that still fit in with the theme and ideas. She said that Tucker probably won't know his ABCs by the end of this school year....but maybe he will recognize a "T" and other meaningful letters, so they work on that. They also do a lot of language work with him, since he wants to talk and be understood so badly, so they are helping him with that. I am very happy with how they accomodate Tucker into the classroom, without letting him run the show!! Tucker gets two tube feedings during the day; these can't be changed around as they are ordered by his pediatrician. The first tube feeding was scheduled during playground time, which meant that Tucker missed out on Outside Time. Well, that didn't work! He cried real tears and fought the feedings the whole time, so the teacher moved playgroud time around for the whole class so that Tucker could be included. They also put Tucker in an empty classroom for rest time. There are 13 kids, and they all rest on their mats for 1 hour and 15 minutes each day. Well 2 of the kids still don't sleep and make noise; the other 10 kids are fine with this and sleep anyway. Tucker does not! He crawls around and even rubs the other kids' hair! So since Rest is SUPER important for Tucker, the teacher and aides take turns each day taking Tucker and his mat to a different classroom so he will have NO distractions. So far it was really working, but then he missed all that school, so we'll see how it goes. Mrs. Amy also said that Tucker is enjoying lunchtime more. At the beginning, Tucker's only requirement at lunch was that he licked everything on his plate at least once. He also had to stay in the cafeteria until one of the grown-ups was finished; then that person would take him to the classroom while the others stayed at lunch. Tucker would help Mrs. Amy set up for journal time until the other kids came back. Mrs. Amy said that now, Tucker doesn't like to leave early. He wants to stay with the other kids. He also used to sit "alone" at reading time and rug time. He had to sit in a chair instead of on the floor because if he could reach any kids, he'd hit them! So now he doesn't like to be alone, so he sits on the rug with Mrs. Amy, who keeps a close eye that he doesn't hit anyone. Mrs. Amy also said that he's making progress with interaction, though not much! Tucker is very much "all about me." I wonder why, haha? Tucker loves older kids, and he is very into babies lately (especially Kate, aka "baby Tate"), but he is not too great with kids his own size or age. This is one of those very autistic characteristics that Tucker meets. Anyways, Mrs. Amy said that lately he will let the kids hold his hands while they walk in line, and he will tolerate the kids being near him! I guess tolerating them is progress, right? Mrs. Amy said that she feels like she pushes Tucker so hard all day long, and he gets very frustrated. She said it's a fine line between pushing him just enough to make him work, and pushing him too hard. By the end of each day, she is "Tuckered out." I told her to keep pushing, and that Tucker has been progressing, so she must be making the right choices. We all wonder this about Tucker-how hard to push, how much is too much, and how far is too far....really no one knows! Today Tucker went back to school for the first time in two weeks. He was SO excited to ride the bus again, I am hoping that he transitions back into the school routine very easily:)