Through Tears Comes Wisdom - by Cara Potapshyn Meyers

She must have cried herself to sleep every night for seventeen months. That's at least how long it would have taken me to put my words onto paper without falling apart.

I am referring to an article I was offered to read. This article was written by a mother whose son has Tay-Sachs disease. A child with this horrendous disease rarely lives to see their third birthday. This woman's son is now 18 months old. Here is the direct link for those who choose to read it: http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?src=tp&smid=fb-share. Be warned...have a tissue box in hand. For those who choose not to read the article, I will summarize for you.

Emily Rapp, is a professor of creative writing at the Santa Fe University of Art and Design. She tells how she had genetic testing for Tay-Sachs, not once, but twice. Both times the results were negative. None of the prenatal testing came back positive. Emily and her husband were excited, looking forward to a happy, healthy baby. They read all the prenatal books to ensure that they would make the best choices for their baby. I can certainly relate. Both my husband and I had $3,000 worth of every genetic test available. We came out with 100% perfect results. Like Rapp, we did the same thing. We read the best books, were staunch advocates for breast feeding, I even put ear phones on my belly for an hour each day, playing classical music while I napped (my son was calmest when Vivaldi or Bach was played). My son was such a sleepy, quiet baby, that at one of my prenatal check-ups, it took almost three hours! The technician needed to take important measurements and my son just would not move. She even called in the doctor, who straddled me and massaged my abdomen to get my son to move. Again, no luck. I ended up having to come back the next day. Thank goodness my son was much more cooperative then.

I look back on my pregnancy, as Rapp must have, with spinning mobiles and fancy bedding dancing in my head. I fantasized about holding my baby in a sling as I did errands, completely non-sleep deprived (I did say it was a fantasy). I was eagerly looking forward to a perfect baby in every way, as I'm sure Rapp was.

I'm not sure when Rapp was given the diagnosis of her son's condition. I do know that the nightmare I had with my son began during labor and only started to wind down about two years ago, once all of my son's disorders were finally identified. My son was six then. Six completely draining years. Six years of ineffective bonding. I regret those six years. But I have developed such an incredibly strong, impenetrable bond with my 8 year-old son, it is as if those first six years never happened. My son doesn't remember. Unfortunately I always will. 

 As I was up with my baby son multiple times per night, with his colic and reflux, for just about three years, I can imagine Rapp welcoming watching her son sleep at night, sighing in his sleep and reaching out to pick him up if he needed comforting. What I viewed as torture, to Rapp would have been, and probably is, the loveliest time of her day. As my son easily had a good twenty-five meltdowns a day, starting at eleven months old, Rapp would probably have embraced laughingly that her son still had so much vigor and fight left in him. When my 18-month old flung his plate of spaghetti and sauce across the kitchen, splattering every wall, floor, and 2 dogs, and I wanted to slide down into a heap and cry. Rapp is probably flinging spaghetti herself, just to hear more laughter come from her son.

Looking back, I wish that I was aware of each of my son's disorders when he was a baby. I blamed myself for my son's uncontrollable nature and didn't realize I had prolonged postpartum depression. I would have forgiven him as well as myself for our lack of bonding those first young years. Rapp is giving her son a gift. A gift he will never be aware of, but she will. And the grief and pain will probably never fully dissipate. But the knowledge that she spent every waking moment (and unslept moment) being fully with her child, must fill her with even a small amount of gratitude. She gave of herself completely. Without self-pity or repressed anger. That is what makes her story so special. She asks the question: How do you parent a child who has no future? You don't. You throw the "rules" out the window and make each day more special than the day before.

She must have cried a bucket full of tears. I know I have. But I still have my precious son with me. She does too. But only for a little while longer.

Week 26 My Life...by Liimu

If they would just stop arguing…three girls, constant chatter, constant arguing and bickering…but when they get along it’s so much fun to watch. So much fun to hang out with them. I am really glad to be their mom and really looking forward to watching them grow up. And right now, as they are all snuggled in my bed watching Animal Planet, I feel pretty proud and serene.
This morning, I was talking to my sister – a mom of two boys – and began to realize just how unprepared I am for this little man about to join our ranks. I have no idea how to change a little baby boy’s diaper, other than to know that it is going to be very different than changing a girl. I’ve never had anyone pee in my face, for one thing. I also have NO boy clothes, have no boy linens, no boy toys (hold your jokes, please)…heck, we don’t even have any front runners for names right now. (OK, we do…but hubby won’t admit it.)

Part of the interesting challenge of having three children and being pregnant with a fourth is that life is happening at such a rapid pace taking care of them all (not to mention working and taking care of our marriage and ourselves), there’s not a whole lot of time leftover to prepare for the new one.

Along those lines, I thought I might share a week in the life:

Wednesday:

School let out at 11 am due to a sudden power outage. I was in a meeting from 11 to 12, and when I got out of it, there were 8 messages on my cell phone, including four frantic messages from my 8-year old who had managed to borrow a phone from a friend on the schoolbus. Dad, our sitter and I all ran around in circles and converged on the bus at the same time.
After getting a solid couple hours of work in, we take Amelia to CHOP (again) to see the geneticist. Four hours later, after painful bloodwork and a trip to the hospital cafeteria, we are finally on our way home. My night is just beginning, as I have to make up the hours of work I missed due to the early dismissal and late dr’s appointment.

Thursday:

Midwife appointment. I spent 30 minutes waiting, 5 minutes being examined, and 30 minutes deconstructing why I’ve gained so much weight in the past six weeks. Our brilliant conclusion: the 500 calories I was no longer burned at the gym, combined with the 500 extra calories I was eating might have something to do with the 2 pound a week weight gain I was averaging. Someone suggested maybe I needed a weekly dr’s appointment to be required as a cover for getting out on the trail to run. Not sure if it was me or the midwife.

Saturday:

Took Amelia to gymnastics, only to find that she no longer wanted to do it because it was too hard. She can’t do the headstands, the somersaults or really anything at all without assistance. Having all the parents watching didn’t make her any more interested in pushing through the discomfort. My emotions ran the full gamut between frustration at her unwillingness to commit to yet another activity to full-blown tears as I realized that it wasn’t her fault and wasn’t likely to get better anytime soon, given the fact that the geneticist didn’t anticipate having an answer to what may be causing her problems for several months, at best.

Sunday:

Finally went to the gym with all three girls and managed to eke out a 1.5 mile run. First good workout in a long time, and I’m sure my talk with the midwife had something to do with it. In the afternoon, we settle in, bundled up in our warmest scarves and coats, to watch Autumn’s last soccer game. At last!

Monday:

After working all day, I dodge out early to meet the sitter and Amelia for her x-rays, as ordered by the geneticist. Our insurance requires us to go through our local hospital, so after waiting for an hour and a half (outside the room because I’m pregnant and am not allowed in with her), they present me with a CD that I have to figure out how to get to the geneticist. It’s taken much longer than I anticipated, so I have to rush right from there to pick up Autumn and take her to her soccer party, where she receives her first trophy and I eat tomato pie and beg off participating in the parents vs. kids soccer tournament. I frantically e-mail the teachers with whom I have parent/teacher conferences to see if we can reschedule to the following day. Thank God for modern technology.

Tuesday:

I have worked out three days in a row, hurrah! I get up later than I normally would and leave half of the morning routine to hubby, but it’s worth it. I feel like I’m at least doing my part to keep the weight gain in check. I work a few hours then head out to parent conference #1. She’s doing great, hurrah! No time to relish this fact – I come home, work a few more hours then head out to parent conference #2. She’s doing great – talks too much. (Yeah, I know – multiply that by three and welcome to my world.) Back home to work some more and get a head start on this blog.

And is it any wonder I don’t have time to think about preparing for this baby? Thank God it’s not due till March. I promise I will start to think about it after Christmas is over.

Testing, Shmesting...My Mom is Coming. By Liimu

I started to write a whole blog about amniocentesis and advanced maternal age and genetic testing and blah blah blah and it was just kind of depressing. What I really want to talk about is the fact that my mother is coming to visit today. I’m really looking forward to seeing her, but I have to admit that I’m a little nervous about how she’ll react to my big old pregnant belly. Is she gonna think that I’m holding it together this time, or is it gonna be obvious that I’ve already gained the recommended amount despite the fact that I’m only halfway through my pregnancy? Overall, I feel really healthy and extremely blessed to be pregnant again, not only with our fourth child but with our very first son. I’m very much looking forward to sharing that joy with my mother, who had five children of her own. I do have to admit, however, that my mother’s reaction to my ever-blossoming pregnant body is not exactly at the bottom of my list of worries.

I come from a long line of women, you’re probably not at all surprised to hear, who were obsessed with their weight. I can still remember visiting my grandmother in the nursing home when she was 93 years old, and her telling me that she weighed herself every day and replaced two of her daily meals with Slimfast shakes. Why they would let a 93 year old woman have Slimfast instead of a meal, I have no idea. I guess I say all that to say that I come by all this neurosis honestly. Anyway, my children are totally excited for Grandma’s meet. She may even get to see my eldest daughter’s first winter swim meet, and we all plan to go out to dinner on Thursday night to a fabulous restaurant in Abington, PA called Timber. It should be a fun evening. By then I should have the results of my fetal echocardiogram and hopefully have been told that the baby is growing fine and is completely healthy. By all accounts, it should be a fabulous weekend…if I can just let go of my age-old neuroses and relax, it might actually end up that way!