The girls' weekend....

It is Sunday evening, and I spent most of this weekend away for a girls' escape to Kansas City. It was beautiful. The weather was gorgeous. I tried to soak up every luxurious moment of my "Kim-time". We started out with a delicious lunch at a trendy sidewalk cafe, and then skipped off from shop to shop along the Plaza. I loved the energy from all the other busy shoppers, and I felt so blessed to just find myself standing in the warm sunshine and feeling so relaxed and free. I sipped cocktails, dressed in clothes that had no chance of being soaked by spit-up, and danced until the wee hours of the morning. I felt very much myself.

As much as I needed and enjoyed this break, I've come to realize that sometimes, these little escapes from my daily grind actually make it harder to cope with the stark reality of Ben's issues and the work required to care for him. It seems like an odd result.... but it is the result nonetheless. Coming back home tonight was sort of a shock to my system that felt like stepping out of a warm comfortable room into a cold winter night. I don't know... maybe sometimes I think that if I'm gone for awhile, maybe Ben will seem better when I get back... maybe I'll see noticeable improvements... maybe I'll be happily surprised.

Instead of feeling happily surprised, tonight I'm feeling low and unsteady... and unsure that I have enough reserves to face the next few hectic weeks of therapies and doctors appointments and the ever-present waves of vomiting. Sometimes peace and strength feel elusive to me. My sense of spiritual connectedness can sometimes just evaporate and disappear like water into the surrounding air. At times like these, all I can do is just let myself have a good long cry and know that I'm doing my best, even though it feels like it may never be enough.

Still no answers....

I received a call this week from Ben's neurologist, explaining that two more lab tests have shown nothing. We're still awaiting the results from one additional genetic test.

When this all began, I felt such a sense of urgency about finding an answer - a diagnosis. When his first MRI was cancelled due to bronchitis, I was crushed, because I felt I needed to know what was wrong with my son. I've never been a patient person, and this drawn-out waiting felt so unfair to me. Yet, somewhere in those weeks of waiting, I slowly began to understand that my attention is more useful when focused on what is "right" with Ben, as opposed to whatever is "wrong". My meditation practices have helped me to stay mindful of the present moment, and not get all caught up in the "what if's" that can sometimes haunt me.

It has been seven months now since Ben was first examined by the neurologist. We know nothing more now than we did then in terms of Ben's underlying issues, and I've grown comfortable with the waiting. We all go through life creating our own agendas and plans, though none of us really knows what the future holds. With that thought in mind, I try to enjoy each cuddle and giggle from Ben, and try to be patient with each cough, cry, and medical procedure. I believe answers will come. I can wait.

A wise woman (my dear mom) recently told me, "Don't wish your life away. Enjoy what you've got right now". Good advice, Mom. I'm going to try to do just that.

The morning puker

After downing his 6oz bottle this morning, my little squirmer-boy coughed three times and threw up all over. After so many months of practice, I am usually able to aim him so that the warm gush lands on the floor instead of my pants. Today my aim was perfect! We have also developed a smooth system for clean-up, with stacks of towels always on hand. We are still investigating whethor Ben's vomitting is due to acid reflux or some other medical issue. His medications don't seem to have any effect on him. After today's episode, he went on to have a happy morning. Sometimes, he gets very upset and needs a nap in order to recover. Living with this situation is like caring for a child with chronic, un-ending stomach flu. He's thrown-up in the car, in restaurants, in Target..... Let me be clear, this is not "spit-up"... it's full-fledged all out puke - everything in his little tummy. Poor kid. Yuck.

Getting to know my child....

At this point, we don't have a diagnosis that explains why little Ben is so severely delayed, but this much we do know - Ben is not a typical one-year-old. In addition to Ben, we have a 3 year-old daughter, Sarah, who is a vibrant, articulate, cheerful, smart, and oh-so-funny pre-schooler. Having Sarah first, we have had the good fortune to experience the trajectory of expected-textbook child development. Sarah has met every milestone either exactly on time, or a smidge early. In contrast, Ben has been delayed from the start. Because he spent a month in the NICU with some severe illness, for many months we sort of "gave him credit".... thinking he's a little behind, but would catch-up. At about 6 months, when he continued to face-plant himelf into the floor, unable to sit up, we had to admit there was a problem. The neurologist agreed with us.... something is wrong. Maybe a brain injury. Maybe a genetic disease. Maybe a chromosomal abnormality.

My thoughts...... Will he ever speak? Will he ever walk? Will he ever be able to say "Mommy"? What will our friends think about this? If Ben has "special needs" (a term I sort of hate, but which is accurately descriptive), will our family and friends still love him as he deserves? How will I cope if he's never potty-trained? How will we adjust if he can't walk??! Will I ever be able to go back to work? I don't want this to be real. I don't want this to be real. I don't want this to be real.........

In steps Zen. As a fledgeling follower of Buddhist teachings, I remembered that I needed to breath. I needed to become comfortable with the feeling of total groundlessness. I tried to remind myself that this situation would only carry the meaning which I assigned it... could be either good or bad... up to me to decide.

That sounds easy enough. After a year of dealing with A LOT of medical problems, I'm realizing that everyday requires a renewal of my committment to find peace and contentment within this situation. Parenting any child is a difficult undertaking. Throw in a bunch of oozing eczema, aspiration pnuemonia, and random but frequent vomitting, and you really might find your resources taxed. At least I do.

Starting Out....

Well, this is my first official post! I guess the first thing I should address is, "Who is Ben?" Well, Ben is my son. He is 14 months old. He has beautiful dark brown eyes and golden honey-brown hair. His smile gives me an instant shot of joy. After spending the first month of his life in the NICU, my husband and I cried tears of joy as we finally left the hospital to bring him home.... but little did we know what was to come.

In the first year of Ben's life, he's been hospitalized three times, he's endured surgery, he has enough doctors and therapists to complete the starting line-up for a baseball team, and his developmental delays have him functioning at about the level of a five-month old.

At now 14 months old, Ben can not sit up unsupported. He can not crawl or walk. He can't feed himself, and he is unable to say any words. He started rolling over just around his first birthday, and I was as joyful as I might have been if I had won the lottery. We still have no diagnosis for Ben, despite an MRI and countless lab tests and genetic testing.

I've decided to write this blog to help document Ben's journey - his struggles and his victories - and also to explore how we find joy and peace in the midst of medical complexities, sleep deprivation, and the normal hullabaloo that accompanies family life. So, this is my starting post.... more to come!