The Emotional Roller Coaster

 

It is hard to believe that it has been about two and a half months since I learned of my little Pippa’s diagnosis. In that time I can’t begin to describe the emotional roller coaster that I have been on. It feels like I didn’t quite reach the line that says “You Must Be This Tall to Ride”, and that I never should have been allowed to board. Somehow I snuck on though.

The climb to the top of the track was the worst part.....butterflies swarmed in my stomach like the locusts in Egypt. The chain pulling the heavy cart to the apex made loud, mechanical clicks...but even they couldn't drown out the sound of my own heartbeat.

I knew there was still time to get off; all I had to do was just throw my hands in the air and say I wasn’t ready. In fact, whoever was operating the ride was probably expecting it. There are so many others who have seen the steep hills, loop-de-loops, and corkscrews turns in the track ahead, and decided to disembark.

But I couldn’t move from my seat. As terrified as I was, I knew I would carry regret far heavier than the fear I currently held if I didn’t continue on. So I stayed in my seat. The roller coaster surmounted the top, and in slow motion began to round the crest. Then, in a flash, it started to plummet towards the earth. Just as I thought I would never stop falling, the track bent back toward the sky and I was lifted back up. There was suddenly a feeling of weightlessness, freedom and exaltation.

 

Of course, in this somewhat cheesy analogy I am talking about the initial days following that fateful doctors appointment and my decision to continue on with the pregnancy. I experienced emotions I never knew I could feel, the most prevailing being grief. Although there was still a little growing bean inside me, I felt as if I had just lost her.

Some of the literature I found promised my feelings of bereavement were completely normal. But normal or not, it killed me inside to feel so sad when I really hadn’t lost anything but my paradigm of how life with a child was going to be...how my child was going to be.

Of course, there was one person I should have turned to for emotional support (my BF and wonderful father-to-be), but I couldn’t. How could I even parallel my grief to the tragedy he had experienced less than two years prior? He knows what it truly means to lose someone. I couldn't be selfish and expect him to be stronger than he could possibly be, and I couldn't think he could make my hurt go away when he had the same hurt, plus at least tenfold more of his own. So, after a long and emotionally charged weekend I realized that I needed to be steadfast in my own decision.

After this first dizzying week, I unexpectedly started to feel amazing. I was reassured by my friends and family that I was going to be a great mom. I told myself that so much good was going to come out of this. I reclaimed the joy of pregnancy. I began to believe that all was going to work out. So what if my daughter had Down syndrome? I loved her all the same, and nothing could change that.

I would be lying, however, to say I feel this way every minute of every day. Even though a lot of my posts present potential problems (whoa, alliteration!) matter-of-factly, I am actually skimming over the true depth of the anxiety I feel. It is not that I don't have an optimistic attitude, but it is a constant battle between my head and heart. The latter whispers reassurances, but the former shouts, "THIS IS GOING TO BE HARD....REALLY HARD!!"

So as much I want to believe that everything will be okay, there are so many moments that all of a sudden I realize I am at the top of another cloud-grazing hill, and gravity is about to take over.....

Like when I am laying on an exam table and the ultrasound tech is looking for a heart defect.

And when the doctor reminds me there is still a high risk of stillbirth.

And when I think about all the upcoming doctors appointments and therapy sessions.

And when I stress about how I will manage if my boyfriend is deployed for his job.

And when I imagine the stares of pity from strangers while I am at the grocery store.

And when I have to explain to my crying Pippa why the other kids are calling her names and won't play with her.

And when I will have to fight with school administrators to ensure my daughter is provided with the proper resources to learn.

Just when I think my head is going to explode with all these apprehensions, I feel a little kick inside me. It is a friendly little reminder that no matter what, I need to stay strong for my little angel. She is going to be depending on me, and I cannot let the “what-ifs” overrule what is.

And if there is one thing I know for sure, love is what it is and always will be. Pure, tangible, unfaltering, and completely blind love.

A Prequel to The Beginning (You'll Change Your Mind)

Life as of early June couldn’t have been going any better. At 28 years old, everything was finally working out just as I planned: promising career, wonderful friends, and a beautiful new apartment…all in a city I absolutely loved. Besides making sure the bills were paid every month, I didn’t have a care in the world. My social schedule almost always revolved around an alcohol based activity, and when I wasn’t drinking IPA or vodka I most likely could be found practicing hot yoga or shopping at local boutiques.



Flaunting an @$$ not meant for mom jeans

I also had been dating a wonderful man for the past year. Although we were long-distance, our relationship was perfect and progressing just as I wanted it to. I felt very lucky to have met him; it is not often you meet someone you get along so easily and naturally with. We also shared many of the same important life views, one of which was prospect of having children in the future. Although a few of our reasons may have varied slightly, neither of us had intentions of becoming parents.



A doodle I made of our relationship

So what were my reasons for not wanting kids? They are expensive, they cause endless worry, they place limitations on just about every aspect of your social life, and they are messy (and stinky, and loud). Of course, these reasons are just a quick and dirty summary. The truth of the matter was that opting out of having offspring is something I just always knew, an innate feeling. Since I was old enough to start seriously thinking about the future, I just never dreamed of having children. It isn’t that I don’t like little ones; in fact I quite adore them. I always dreamt of other things, travelling the world being the first and foremost. I wanted the freedom to do whatever I wanted, whenever I wanted. The lifestyle I desired just didn’t have the time or place for poopy diapers.

There were countless times people would tell me, “Oh, you’ll change your mind one day, just you wait.” They would tell me how much joy a child can bring, and that I will never feel a greater love than that for my own child. I have always politely explained that I was well aware of those things, and I didn’t believe every aspect of parenthood was burdensome. I hesitate to add that most of this I have learned from raising my puppy, a boxer named Thor. I know some people get offended when I compare a dog and a human child, but it is ridiculous how much I love that boy. Regardless of how much responsibility he can be, I wouldn’t trade him for the world. Ignoring my experience with pet ownership, I am logical enough to deduce that people (most sane people, anyway), wouldn’t continue to reproduce if there wasn’t something uniquely rewarding about it. Like anything in life, though, it is a trade-off and I had made up my mind long ago about what I side I wanted to be on.



My early "mothering" days

Then one little pill (or lack thereof) changed my mind for me.

It was mid-June, and I only had a week and a half at work before I went on vacation. I had a lot of upcoming plans, but they mostly involved heavy amounts of drinking. As I struggled to make it through work thinking of all the upcoming debauchery, I suddenly realized I was “late”. I was on hormone birth control, so although it was odd I didn’t fret about it too much. (I had been on “the pill” since 18, and my body has always struggled to completely adjust to a regular cycle like it was supposed to). For peace of mind I stopped by the drugstore on my way home from work and picked up a cheap box of home pregnancy tests. I threw them on my bathroom counter and went about my normal evening. I was in no hurry to pee on a stick, especially when I knew the results had to be negative.

A couple hours later, I finally went to the bathroom and used my recent purchase. The instructions explained that a positive result would be indicated by a plus sign (makes sense), but it may take up to five minutes to appear. I looked down at the result window after no more than 15 seconds, there were those two intersecting lines. I felt my heart drop. Thankfully the box came with 3 tests, so I concluded the test must be defective. I used a second test. Same result. Number 3….. another plus sign. Of course I rationalized the whole batch of tests was faulty, so I ran to the store and picked up a different brand. It goes without saying there was no change in the outcome.



The undeniable digital confirmation

Suddenly the reality hit me: I was going to be a mother. Whether it was in my plans or not, there was a baby on the way. I thought as to how this possibly could have happened, and realized I had missed one pill a few weeks ago. Somehow against all odds, this one absent dose changed the course of the rest of my life.

Continue the story here.

Hooray for Boobies! (& I don't mean the Bloodhound Gang album)

When faced with the choice of breast versus bottle, there isn’t much deliberation for me. Here are the extremely convincing factors in my decision:

• First and foremost, breast milk is one of the healthiest things you can do for your newborn. There are many all-important antibodies and nutrients passed from mother to child, especially in the first few days. (The extra-special milk produced right after birth is called colostrum, which is thicker and a yellowish hue).
• Of course, there is also the cost savings. If you've ever looked at the prices of formula at the store, you'll know that it is expensive!! I don’t get why anyone would want to spend the money on formula when they have a free supply of nutrition made right in their own body (unless of course there is a sound medical reason or a need to supplement).
• Convenience! How easy is it to just pop a boob into a baby’s mouth at 3 a.m. rather than have to stumble down to the kitchen, mix up the formula, and heat the bottle?
• Lastly, there is also the bonding experience. It is shown that the physcial contact has a postivive effect on babies, and helps them feel more secure. It can also help mothers who may suffer from post-partum depression.

I do have some concerns about being able to breastfeed, though. A common symptom of Down syndrome is hypotonia, or lack of muscle tone. The easiest way I've seen this described is that a baby will feel “floppy” in your arms.

According to my research, a baby with DS often has trouble learning how to suck properly due to hypotonia (since the muscles in and around the mouth are also affected). It typically takes more effort to start milk flow and maintain a latch during breastfeeding. Therefore babies with Down syndrome often have a difficult time getting enough milk. This can in turn affect a woman’s milk production, hence exacerbating the problem.

From all that I’ve read it is completely possible to overcome the difficulties. There are ways of holding the baby which can help mitigate low tone issues as the baby learns to nurse. Also, pumping is often necessary to ensure milk supply is adequate, and can also be used to help with starting milk flow before a nursing session.

Again, from what I’ve read and researched, pumping can be a little tricky at first, and it may be very time consuming. Having a high quality pump can certainly help alleviate any frustration, although they can be quite pricey! I was lucky enough to win the Medela Pump in Style, thanks to All About Baby Charlotte and the Nursing Mother's Place at Presbyterian Hospital.

Now it may sound really strange, but I can’t wait to use it!! (Mainly because that means I will finally be able to meet my little angel).

For mothers who have chosen to formula feed.... what made your decision?

Down Syndrome and Alzheimer's

Although there are more immediate concerns I have for my little girl’s health, Alzheimer’s disease is something else she may face in the future. Studies have shown that genes on the 21st chromosome contribute to the aging process, and therefore an extra copy of 21 increases the risk of a degenerative memory disease.

I am choosing to write about this today because there was a recent conference in Chicago where experts in both Down syndrome and Alzheimer’s met to discuss the link between the two afflictions. In a study funded by Johnson & Johnson, individuals with Down syndrome will be the focus of research since the occurrence of Alzheimer’s is much higher in people with DS (roughly 25% show signs by age thirty, with the rate increasing to as high as 75% with age). 

In the past the life expectancy of an individual with Down syndrome was not much past 30, so the connection was not as evident. Now that individuals are living into their 60s, scientists see an opportunity to study a disease that slowly steals people from their loved ones.

The hope is that by monitoring those with a high risk from an early age (before symptoms manifest), they may able to do better understand the progression and to prevent the causes of Alzheimer’s (brain plaques and tangles). You can read the full article here.

One of the questions posed in the article is if parents of adults with Down syndrome would be willing to sign them up for these studies. I think about what I would do, and I suppose it really depends on what the study would entail. Would it be diagnostics and observations, or more risky drug trials? Would you sign up your son or daughter to be studied?

October is Down Syndrome Awareness Month!

In the past years, Down syndrome is becoming better understood as the community strengthens and strives to educate others. Unlike in the seventies where those diagnosed with DS were commonly institutionalized, there is now a realization that with the proper therapies and care people with Down syndrome can lead fulfilling, productive, and “normal” lives.

There is still a long way to go, however, when you consider that 9 out of 10 babies diagnosed prenatally with Down syndrome are aborted. I firmly believe that this statistic is largely due to a lack of understanding and knowledge. I discuss some of my personal thoughts on this matter in my post, A Choice.

They bottom line is though, despite all the possible health problems and developmental delays a child with Down syndrome may have, they will overcome more than you can ever imagine. They will amaze you every day and bring more joy and love than you ever thought possible. I believe this, and my baby girl still has 20 weeks left in my belly.

 

So, in honor of Down Syndrome Awareness Month check out your local Buddy Walk, an advocacy event to promote the inclusion and acceptance of people with Down syndrome.

Also, check out this "Wall of Awesome" at Noah's Dad.com, which is a post where parents can share their wonderful stories about raising children with Down syndrome.