The Team

A few years ago, my son's occupational therapist at the time, who herself had a son with special needs, offered these words of wisdom: "Get your team together -- those doctors, therapists, caseworkers etc who will collaborate with you in helping Max reach his potential." It took me a while to understand, and to fully appreciate, those words.

Max sees several specialists on a regular basis. In addition to his pediatrician, he is also followed by a gastroenterologist, a neurologist, an opthalmologist, a pulmonologist and a surgeon. He currently receives OT, PT and Speech, on a weekly basis, as well as feeding therapy. When Max became sick this fall, and required rehospitalization (for the first time since NICU discharge), we chose to be admitted to Childrens Hospital LA. And, it was at that time that my husband and I decided, with our pediatrician's support, that we would transfer the majority of Max's specialists to Childrens Hospital. And, in so doing, we were creating our team of doctors who could work together to address Max's somewhat complicated medical needs. (Our pediatrician, who we absolutely love, likes to use the phrase "He has too many issues to go anywhere else....")

So we have this medical team; but in addition to that we also have a wonderful group of therapists who are involved in Max's life on a weekly basis. These people have had an incredible impact on Max's development, and have greatly improved his quality of life. while doctors sometimes have a tendency to see only the diagnosis, or the immediate medical concern facing them, these therapists continue to treat my son as a whole child, and that is such a blessing.

But, of all these people, I would have to say that the people who have been the most significant members of our team have been Max's special ed teachers. The teacher from his early intervention program is now a family friend, and continues to be involved in Max's life. I credit her with Max's very early enjoyment of "school". Through her use of sign language, she helped Max develop confidence in his ability to communicate his needs through sign. For me, Max's ability to communicate offered a glimpse into his mind and that was of great comfort.

His current teacher, a wonderfully gifted woman, has offered me the opportunity to witness a different side to my son's personality. With her guidance, understanding and insight, I am beginning to see a more mature little boy; one who is capable of reaching out and having his own special relationships with significant people in his life.

Thank you, one and all, for reminding me that I am not on this journey alone!

Happy Birthday Jozey!

My younger daughter turned one on June 1st! I can't believe how quickly this year has passed; and how much she has changed in just 12 short months. She's pulling herself to stand and using several signs to communicate. She loves to play with her big brother and she has a delightful personality.

It's so different having a typical child after having a preemie. She's just so healthy....and low maintenance.

What an amazing year it's been for all of us! Jozey has grown into this fiercely independent almost toddler who adores her big brother. Max has really embraced his role as the older brother, and takes it upon himself to inform me when his baby sister needs a diaper change and that she should have crackers and juice too.

I have been quietly observing this blossoming relationship between these two, and have loved every minute of it. It is pure joy to watch them interact; and the way my daughter's face lights up when she sees her brother.....oh my! It warms my heart.

Thank you, my beautiful children, for choosing me to be your mommy! I love you all!

Be"longing"

I was at a local park the other day with my younger daughter, just around lunch time. She had been stuck in her car seat for most of the morning, running errands and napping. As she is on the verge of walking, she loves any and every opportunity to move around (what typical almost one year old doesn't?). I was not used to seeing such a large crowd, since we typically go early in the morning. Anyway, there were babies everywhere, from about 8 months to 3 or 4 years. A couple of moms were using the bucket swings to feed their younger children, and there was a large blanket laid out next to a bench, with lots of snacks spread out for the kids. Apparently, it was some pre-arranged play group. And, as I observed the scene, I felt this sense of longing creep into me.

I had no desire, really, to talk to any of these women. Their lives seem so different from mine. I overheard a conversation about taking toddlers to see a show, and that seemed so foreign to me. My son's days are filled with preschool and therapies. My daughter's schedule revolves around my son's schedule. And my life revolves around the two of them. I try to provide my kids, my son especially, with as many typical experiences as possible. But, usually, these experiences need to be planned well in advance; but, there are only so many "free" days.

I longed for the innocence of motherhood without the trauma, without the loss, without the challenges of infertility. Of course, I know nothing about these women, nothing about their lives or what challenges they may have. I know only my reality....and that is far too much. I know that getting pregnant takes more than just talking about it. I know that getting pregnant is no guarantee that you'll stay pregnant, nor that you will deliver a healthy, full term baby. I know that babies die. I know that I can never know the future.

McDonalds

Max started feeding therapy at Childrens Hospital Los Angeles. We've gone for two sessions now, and each time, we found ourselves making a stop at the McDonalds which located on the first floor. Therapy starts at 2, but we're usually there early. This way, Max can use his wheelchair to get himself around and, like most 3.5 year olds, he likes to wander and take his time. He's quite social, so really enjoys wheeling himself up to complete strangers and saying "Hi" with a sweet voice and a wave. Anyway, we usually have at least a half hour before our session, so we typically make a stop at McDs so that I can get some coffee and a snack for my younger daughter, who by then is really hungry. I get the same order each time: 6 piece nuggets, fruit & walnut snack, and a drink. Well, it turns out my son really likes apples....or, I should say, he likes the idea of apples. He can't quite eat them yet, but he loves to pretend to bite down and chew the crisp pieces. (His feeding therapist suggested we put the apples in some organza and allow him to have the experience of biting and chewing, without the risk of choking on the pieces.)

Well, all this is just background for what happened today. I picked Max up from school, and as I was settling into the driver's seat, I hear him calling me from the back. The conversation went something like this:

Max: "Uhm-ma (Korean for "mommy"), McDonalds!"

Me: "McDonalds? Why do you want to go to McDonalds?"

Max: "Want to get some apples to eat."

Me: "Apples? You want apples from McDonalds?"

Max: "Go to McDonalds. Get some apples to eat."

I couldn't believe my ears! I had just had a full conversation with my son, without coaxing, without prompting, and without initiating with questions of my own. This is the first time...for both of us!

So, of course, after that, we had to stop at McDonalds. Way to go, Max!

Tired

I am by nature an obsessive compulsive person. I admit that, in general, these tendencies have served me well. And, with my son's current medical and physical challenges, once again these obsessive compulsive tendencies have helped me to meet his many needs. For example, Max is on a very regimented medication and feeding schedule. The medications are time sensitive, and his feedings are rate/volume dependent as he continues to rely on tube feedings for nourishment. I keep a daily log that includes time, meds, feedings, diapers and any observations that might be relevant to how he's tolerating his feedings. I have notebooks full of daily entries that date back to the day of his discharge from the NICU, over 3 years ago! Give me a date, and I can tell you how much he "ate", how many diapers he had, when he slept and whether or not he was "sick". And, on more than one occasion, I have referred to these detailed entries when providing medical history for my son, especially with GI related issues.

But, there is a down side to this obsessiveness. I am exhausted. I am exhausted physically, emotionally, mentally. I feel as if I can't decrease my level of vigilance because, if I do, I might miss something...even though I don't know what that something is. When Max coughs, do I dismiss it as "just a cough" or is it a symptom of something more troublesome, something that could lead to another hospitalization, or take us down a path of no return? It's very different with my daughter, who was born full term and has, to date, been extremely healthy. I don't worry when she has a cough or a runny nose. I also don't worry about how much she eats, or what she eats. I trust her. I trust that she'll eat when she's hungry, drink when she's thirsty, and her immune system is strong enough to fight off whatever may come her way.

Ultimately, my obsessiveness is an attempt to have some control over the uncontrollable. Perhaps that is why I'm so tired...because I know that no matter how vigilant I am, I can not guarantee that my son will not get sick, that he won't have to struggle, that he won't continue to face the challenges that are the consequence of his extreme prematurity.

We Are Grateful

A couple of months ago, when my son started to show an interest in eating again, we made it a point to sit at the table and have our dinner together. We start our meal with the same ritual, a brief prayer: "Dear God, we are grateful. Amen." Every so often, in the rush of getting the kids settled, appeasing my younger daughter who is frantic from hunger, we inadvertently take a bite or two. Max immediately stops us by shouting "We are grateful....we are grateful...." It's his way of letting us know that we need to say grace.

And so we stop...we hold hands...and we say our prayer of gratitude. And, in so doing, we are reminded of just how fortunate we are.

We were in the ER this past weekend...actually, two ERs. The first ER trip was due to our concern that Max's feeding tube might be harboring some type of infection because he was experiencing fevers and the tube site was oozing. X-rays showed that all was well with the feeding tube; but he might have a possible pneumonia. We were discharged on amoxicillin and told to follow up with our pediatrician. On Sunday, Max's fevers continued and while we were treating with Motrin and Tylenol, we decided to take him to the ER when it peaked at 105.3! This time, we went to the ER where my kids were born. The ER docs, therefore, have my son's complete medical history at their immediate disposal. After assessing him, the ER doc concluded that he was probably fighting some type of viral infection and we could continue to treat him at home. So, we came home feeling relieved that there was nothing more to be done than to wait it out and allow his body to fight this bug.

The fevers have disappeared and he's doing much better. But the reason for mentioning this adventure at all is the fact that the ER doc actually called us the other day to follow up! He left this message asking how Max was doing and to give a call back to the ER if we had any questions or concerns. I was very pleasantly surprised....as well as touched by his thoughtful gesture. When I returned the call, the nurse informed me that he was not even on duty that day; he had just come in for a brief time. The overwhelming gratitude I felt towards this doctor, who would check up on us on a day that he wasn't even scheduled to work, brought tears to my eyes. Yes, we are grateful!

Choosing Guardians

I've been sick for a few days now...sick enough to be bedridden for almost 24 hours. I'm the kind of person that prefers to push through any type of illness and just keep on going. So, you know it's bad when I need to stay in bed for 24 hours. Being bedridden gives me a glimpse into just how much I take my health for granted. I know I don't get enough rest. I know my eating habits are worse now than when I was in college. I know I need to get more daily exercise. I know all these things will help prolong my life; and yet I take it for granted that, regardless, I will live for many years to come and will see my children graduate from college, get married and begin families of their own.

But, what if? What if something were to happen to me? To my husband? To both of us? What about our children? Recently, my husband and I have revisited the discussion of who would be guardians for our children should we both pass away. While uncomfortable (I mean, who wants to think about the possibility that you won't be around to watch your children grow into adulthood), it was rather easy. We were in agreement on our choices for guardianship. I have had the good fortune to marry a man who has five younger sisters, three of whom had children before we did. And, even before we had our own children, I felt a kinship with one of my sisters-in-law's (SIL) mothering style. That is the sister we chose as our primary guardian for the kids. She and her husband have three children of their own, ranging in age from six to twelve.

I spoke with my SIL a few nights ago just to remind her of the discussion and ask again if she and her husband were agreed on being guardians. We will be signing the official papers soon, and I wanted to make sure that they had both taken into consideration the possibility that Max will have some long term special needs/challenges. He could still be on a feeding tube. He may not be walking yet. He will continue to need various therapies. But, they had indeed discussed these possibilities, and were agreed that they wanted to accept the responsibility. My SIL even joked that she would quit her job to be there for Max, in whatever way he would need. (I actually think she's serious about that.)

I am so very grateful to know my children will be well cared for and loved beyond measure. The mere idea of not being here for my own children can keep me awake some nights, gripping me in fear. So I have to keep reminding myself that there ARE other people who love them. Of course it won't be the same as mommy and daddy; but these precious babies will not lack for love from grandparents, aunts, uncles, cousins and close friends. And for this, I am very blessed.