Happy Mother's Day

Mother's Day represents a lot of things to a lot of people. For me Mother's Day represents the first frantic phone call I ever received from the hospital telling me that Max was not doing well and I need to get back there fast. It's strange how you can remember exactly where you were when such things happen, I was in the kitchen frying meatballs for Ellie because I felt so guilty about the days of neglect she had suffered while I slept next to an incubator in a NICU unit. There I was feeling guilty for not caring for my oldest child and now I felt guilty for not being there when my baby got so ill and needed me. Guilt....there never seems to be a shortage of it when you're a mother.

I have longed compared parenting a chronically ill child to "parenting on steroids". Everything is so intense, life has a sense of urgency, it's all so different. The following piece was written, I believe, with this very thought in mind. I stumbled on it years ago and I think it gives voice beautifully, to the lives of some very "special moms".

Thoughts of a Mom

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, endocrinology, and psychiatry.

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 "A Trip 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.

Happy 9th Birthday Max!

Max celebrated his 9th birthday yesterday and although it may be a day late we want to wish him a great, big, HAPPY BIRTHDAY!

We were out of town for the big day doing the touristy thing with our in-laws and even though Max was very excited to show his aunt and uncle Arizona he was also very excited to move things along so as to get to his birthday dinner (this kid has his own set of priorities). I felt like we were on a bad bus tour all weekend with Max hurrying us up. By yesterday afternoon he was ready to bust if someone didn't get him a plate of sushi and fast. I'm happy to report he made it to dinner where he probably ate more than the rest of us put together.

Without a doubt the most touching moment of the day was when the hostess brought us to a table at Max's favorite Chinese buffet and who was sitting at the next table? The NICU nurse who was in the delivery room with us nine years ago! Sandra is a lovely woman who took such wonderful care of Max those first six weeks before his "graduation" to the PICU. She is the type of nurse who loves what she does, the babies she cares for and their parents too. I learned so much from her those few weeks, she brought us her nursing text books so we could learn as much as possible about what we faced with Max. She went through some of Max's roughest days with us and whenever I told her I couldn't "do this" she always told me in her very gentle manner that not only could I do it but that I would excel at things I never dreamt of being capable of doing.

Many years later as I look back on the many broviac dressing changes, TPN preparation, IV meds administered, g-tube feeds, etc., etc. I have preformed and I know Sandra was right, my son needed me and I would naturally rise to the occasion. I just didn't know "the occasion" would be nine years long with progress made but no end in sight!

I think it very fitting to not only wish Max a happy birthday but also to thank the many, many nurses, doctors, and other caregivers who took, and still take, such good care of all of us and have been such a big part of the gift we call our son. Thank you all from the bottom of our hearts!

Is there anyone this kid won't talk to ?

Max explaining to his father that ostriches bite, obviously after learning this first hand!

Mom, get these off of me!

A bird in the hand is worth two in the hand.....maybe.....

Waiting.....

There has been a lot of concern as of late that Max has been in congestive heart failure (it’s not as bad as it sounds it just means that the heart does not squeeze strongly enough causing the lungs to fill with fluid) so I have been spending more than my share of time with telephones surgically implanted in my ear talking to the folks at Johns Hopkins.

This concern has been based on a number of things, most importantly on the very wet cough Max has had for the last six weeks or so. Our pediatrician has put Max on courses of steroids and antibiotics and nothing seems to clear the cough so last week we had a chest x-ray to rule out allergies, respiratory infection. etc. When the chest x-ray showed no signs of anything as mundane as bronchitis or the like the cardiology team at Hopkins was even more worried that Max’s aortic valve was deteriorating further. Because we already had appointments set up in Tucson yesterday with a new cardiologist and Max’s local cardiac surgeon the plan was to get the echocardiogram done and overnight it to Hopkins for their evaluation.

So yesterday brought both good and bad news, it seems the echo didn’t look any worse than the one done back in March while we were in Baltimore, at least as far as the cardiologist could see. This takes the “fire drill” atmosphere out of the picture…..that is until Hopkins looks at it and then all bets are off. That’s the good news. The bad news is that in speaking to Dr. Teodori (Max’s original cardiac surgeon) the feeling is that this quick change in the leakage of Max’s aortic valve is a pretty serious medical finding. Now I know that this seems like a “no brainer” in that valve leakage is NEVER a good thing but in this case it’s even worse because Dr. T never, ever, ever says something is bad unless it’s really, really bad. I have looked to this man for nine years as the gauge by which I measure how much trouble we’re in, he’s always been dead on so hearing from him that he was pretty concerned has me spinning.

And so we sit and wait, wait for Hopkins to say all’s clear for now and then we wait another three months and start the process of echos and EKGs all over again until it is decided that we can wait no longer. Have I mentioned that I stink at waiting?

Max’s Big Day

I’ve decided that after several less than uplifting posts it’s time for some levity. On Saturday Max will be making his First Holy Communion and Confirmation. In the Catholic Church this is HUGE thing! Yet what is Max most excited about? Is it that he will be receiving Jesus through Communion or professing his faith or even that these ceremonies are seen by the Church as rites of passage? Oh no not Max, he’s just excited about his outfit. He will be wearing his first ever suit and tie! And we’re not talking about any old clip-on thing, nope this is a real silk tie imported from Italy. His Uncle Vito (Michele’s brother and Max’s Godfather) is brining it as a gift tonight when he arrives from Italy for the festivities. Max is very excited for his Uncle’s arrival but I’m starting to suspect that it may just be the tie he’s waiting for. You see Max picked out this tie all by himself at Christmas and he insists that he looks very, very handsome in it! He’s never at a loss for tooting his own horn!

In honor of this big event family members have been flying in all week and Max is just in seventh heaven! He loves having everyone around even amidst all the confusion that too many Italians in one room can cause. Although he hasn’t been feeling too well respiratory wise his broad smile hasn’t left his face all week and that’s put me in my own “seventh heaven”.

Plans

I have spent the last week trying to get organized. In a sense I am creating our game plan: the who, the what, and the where of our latest medical crisis. There is good and bad in this process. The good is it makes me feel in charge of a situation which is ultimately out of my control. The bad, well the bad is really pretty simple, with planning comes the realization that this is all real, Max needs another open-heart surgery. It still takes my breath away just writing or saying these words.

This is not how things were supposed to go. Eight years ago in the parking lot of a medical building I accepted that things would not go as they were supposed to when we first received the news that our baby was not healthy, he had a heart defect. Although I knew this changed everything I also knew (because we were told) that all this really meant was that Max would need an (one, singular) open-heart surgery to repair this defect. We were told that he would go on to be a “regular kid”, no worse for the wear. No one could have known that Max would be far more complicated than this. His one open-heart surgery has turned into 36 procedures, four (and soon to be five) of which are cardiac surgeries. How did this happen? Why am I still not used to this whole thing? The “how” is still being studied, Max has what they call in the medical world an “unspecified” syndrome. The “why” is because there is NO way to EVER get used to the fact that your child has to endure all of this, day after day, every single day of their lives.

So back to the planning…..I have spoken to several of the docs, the genetic specialist, and other medical staff at Hopkins who have cared for Max these last few years so I’m starting to see their care plan emerge and this allows for all of us to plan. I have spoken a few times to our local “cardiac hero”, Dr. Teodori who has been Max’s surgeon since birth. He has helped us get in touch with a pediatric cardiologist in Tucson who will manage Max’s cardiac care here at home. (If you consider Tucson, a city two hours from our house “ home”. But that’s a story for another post.) I have set up an appointment for Max with this new doctor so that we can introduce ourselves and get our plan in order with him. We will need this doctor to get up to speed quickly on Max, collaborate with Dr. Teodori, and most importantly with the surgeons and doctors at Hopkins who will eventually be doing the valve surgery.

In the few phone conversations I have had this last week with Dr. T I have also been hit hard with the cold reality that my son is truly a medical conundrum. His condition is so extremely rare that no one is able to figure him out. I unfortunately came to the conclusion that these doctors have always thought of Max as an unknown. No one could have known what his path would be and they still don’t know what it will be in the future. All of this has actually lead me to a very big, black hole – does this unknown include an unknown outcome? We know that Max long ago surpassed the one surgery, no worse for the wear phase but does this unknown factor mean that Max’s future is uncertain. I’m crying as I type this but I have started to wonder if my son’s doctors think all of these issues indicate an unfavorable outcome for Max. I can’t bring myself to type what I really mean by this but I will tell you that I voiced this concern to Michele the other night and I clearly knocked the wind right out of him and he asked me to never say it again. And so I won’t, but not just for him but for me. We can’t afford to waste precious time on negative thoughts when there’s so much planning to do for our son’s future.

Our Hero

Over the weekend Michele's brother sent us a video that he made for Max. Titled "I Have Something Great to Reveal" the video names Max as it's "Hero". We all know Max's opinion of himself so it was not strange that he asked me to post the video. For all you non-believers Max would like to make it clear....HE RULES!!

Enjoy and have a great week!

Happy Easter!