Being A Mom With A Chronic Illness (ChronicBabe carnival)

Image by Praziquantel via Flickr

My goal in life, since I was five years old, was to become a mom.  I thought getting pregnant would be natural and beautiful but it seemed we needed a little help. After two and a half years of painful shots, medication and an every day visit to the infertility clinic  for blood work and ultra-sounds I finally was pregnant. I collapsed to my knees behind the closed-door in my stuffy office and kissed the dirty gray carpet in gratitude. I cried with happiness, one hand already covering my tiny belly.

My son was born and we called him Buddha baby, he never cried, he was always happy, a smiling, compassionate and outgoing kid.  He was my miracle baby, my first born. I went to every baseball game for my son, sitting in the bleachers in the rain, and sneaking away to the car to warm myself up.

My daughter came, naturally, twenty-one months after her brother was born, screaming on top of her lungs as she entered the world. I remember going into her room and lifting this red-faced baby girl to my shoulders, she would take a deep breath and her whole body relaxed into my neck.  I was her only source of comfort when she was a baby. I was there for every ballet lesson and dance recital, holding a bouquet of daisies, her favorite flower, in my arms like I was nestling a newborn baby‘s head.

I did everything for my kids and I loved doing it. This was the career I decided on and I wanted nothing more. I stayed home with them even when they got older because I knew they needed me during the tough middle school years. They would never admit it but they were happy to see me when they got home. Working moms called me “old-fashioned” but I didn’t care.

When I was 50, I went through menopause and my body fell apart. I was diagnosed first with Hashimoto’s Thyroiditis, an auto- immune disease. When Synthroid, did not help me at all, I warily shuffled from one doctor to another, every bone and muscle and joint in my body screaming with agony.  My internist had given up on me, she stormed out of the room while I was laying there on the exam table crying in pain.  After visits to many different doctors I was finally diagnosed with Fibromyalgia. I felt like I had the flu, every single day and night, with no fever, my personal definition of Fibromyalgia.

My life changed after that. I became the mom “before” I was sick and the mom “after.” I felt that I was no longer the mom you could always count on. I prefaced everything by saying “If I feel okay that day,” and “I’ll call you the morning of…”  Luckily my children were fourteen and twelve but it was now Dad who got up, made breakfast and lunches and dinner. Me? I was asleep, always asleep and in pain.

I felt lost and sad for years, not being able, physically, to be the mom I once was. Now, I am dropped off at an entrance to anywhere we go  like the handicapped patient I am. I sit alone, on a chair, when all the other parents and children go on a campus tour to see the entire campus. I cannot walk that far. I don’t want to be an embarrassment to my children or a burden for my husband.  I want the kids to remember the mom I was before I was sick but I know they don’t. They probably just remember me as I am today. I am not the mom I was before my illness even though my heart remains unchanged. I am the mom that they have now and because of that I have tremendous guilt and a lot of residual, emotional pain.

“Please Come To Boston In The Spring-Time”

My husband and I  are sitting in the huge auditorium at a college in Massachusetts, visiting with our son who is a Junior and our daughter who is a Sophomore in High School. It’s the first college tour for me and I am both in awe and incredulous. Like an ice-cold hand  pressing on a sunburned body. Shock. Excitement. Surreal.  An out-of-body experience and, the new reality that is your life.  The first college tour ever is probably the one you, (more than your son and daughter) will remember, because after all these years, your baby, your first-born is really, truly, thinking about college; and eventually, sooner rather than later, is going.  Gone are the Mommy and Me classes, the grade school performances, the middle school musicals.This is being a Junior in HS,  this is big.

As much as the focus is on the student you will find, as I did, there is a moment of part regression, part longing that whispers into your ear  “Why can’t I go to college  for four years and have fun and study? I sat through talk after talk, part of me knowing now how much fun college was but not appreciating it back then. I listened intently as they spoke about community involvement, special clubs, volunteering. It was all I could do not to raise my hand. But this wasn’t about me, this was about my son.

Watching your baby (and they are all our babies) sitting in the auditorium, intently listening to the Admissions Officer or Student Guide talk is fascinating in itself, regardless of what school you are in. The baby whose hands you clasped just minutes ago, to cross the street, is the one bounding up the stairs  with a bold grin to be on a tour with a student who is also a Volunteer Ambulance Corp and an EMT. That’s a connection, something your child is passionate about; something that at this college exists.

My point is that irregardless of the all too familiar campus spiel  (and after a while they do all sound the same) and how great this and that college is, there may be a pivotal, random moment (and it could be ANYTHING) that will have your son and daughter make his or her mind up in half of one second. You will know it when you see it, your child will absolutely glow. It could be the food in the cafeteria, or a particularly nice day outside or what the girls are wearing on campus. This is what I am here to tell you as we get started in the process. It may not make sense to you, but it will for your child. That one second buzz word (like Volunteer Ambulance Corp and EMT)  could have been the moment his decision was made. It  could be made in a blink of an eye or a particularly sunny day, or the french fries in the cafeteria. What they are looking for and most certainly find, is a spark, a connection, the right buzz word for your child. If you know your kid, you can’t miss it and you won’t. It most certainly doesn’t mean he or she will get in but it will be a moment to remember.  Pay attention to it.

Go, little bird, fly away and be happy. You and I both know I will cry when you leave; saying good-bye is not one of my strong points.  All parents really want, is for you to be happy, be safe and come home to visit even if you bring your dirty laundry. We’ll take what we can before we send you out back again into your new exciting life, away from us, in your new fun-filled, marvelous world.

PSAT: The Beginning

Lugubrious, Nefarious, Eviscerate. What do these words have in common?  You say nothing? Wrong.  They are all words to be studied for the infamous SAT’s my son will take in March.  The dreaded PSAT’s,  for anyone who doesn’t have a Middle School or High School student, are over. There is “before”  in the college process and then, there is” after”. This goes on for a very, very  long time.

At the moment, my son completed his PSAT’s taken with more than a little arrogance and plenty of time. “It was way easy” he proclaimed. Not so much when he got back his test scores (which I thought were pretty good). My approved quote to any mother that might ask how he did was “he was disappointed he didn’t do better.”  We now talk in code.

The kids can or cannot talk about their scores, this is individual. It may be alright with SOME friends but definitely not with others. Why, who or when is completely unknown. This is for KIDS ONLY.  If  I casually ask how a particular friend had done, I am met with an annoying glare, translated to “why on earth do you want to know and no way am I telling you.”

I’m not sure if it’s the age (okay, it is DEFINITELY the age) but communication, affection, closeness and manners all decline; this is from my own experience and those of my mom friends too.  We KNOW you have to separate, we KNOW you are going to college in a little under 2 years but really, there is nothing to prove to us. Ah, I see, kids are really doing it for themselves. We know it’s a process called individuation, but they don’t and that’s why they act up, guard their territory, communicate less, condescend more and basically act as if they have already packed up and left home. The only unknown is where their dorm room is, does it have a stereo system and which college they will be attending.  Other than that, they are pretty much done.

Except for the fact that the process is just beginning. After the PSAT you need to study for the SAT; many children (children?) go to tutoring. It’s just not that simple as that. There is SAT tutoring in large groups, SAT tutoring in small groups, and SAT private tutoring. For those who knew nothing about it and waited too long with their oldest child, (like us) there is also SAT tutoring on-line and no, silly, it is NOT free. Nothing is. You even have to pay for  the test….every single time you take it!!!   And, truth be known, students take it several times to see if they can better their score.  At some point, the parent or the child will just have to stop.

The next paragraph is pure conjecture on my part and in no particular order but from what I have been told, the tests just multiply after this. There’s the ACT (instead of or with the SAT) there a re subject tests (no clue how many) then there is the “Common Essay” that you use as your general essay submitted to a multitude of colleges. In addition, there’s the separate college essay that’s geared to a particular school, and they all want them. There’s the interview, the alumni interview, the visit- the- college- and- show- them -how- interested- you- are -interview and several others.  It’s not easy for the kids and it’s definitely not easy for the parents or for that matter, the younger siblings.

You CANNOT book a vacation or make any plans from halfway through Junior year to halfway (minimum) through your Senior year. You will be visiting schools with your parents, visiting schools with your friends, wanting to go to visit schools and of course not wanting to go at all and wish the decision could be made without you.

So far, we are at the very beginning of the process. My son puts his hands over his ears and screams Nah Nah Nah at the very thought of going on a college tour. Some of his friends have been on tours already, some already know which college they want to go to, if they get in. Then, of course, there’s early admission where you sign your life away and many other admissions after that, delayed, delighted and dismayed.

Hang in there with us. We’ll take you with us on every step of the prep. Enjoy your early High School years, they really are a lot of fun. But, think to yourself, as soon as second semester sophomore year approaches, it only goes downhill from there. They up the work load, pile on the homework, test your skills, dedication and ethics just to get ready to start the process from the very beginning, the PSAT.