Three Things I Will Not Do as a Mom

Every parent-to-be says things like, “Oh I will never be that kind of parent” and “I would never say/do something like that.” I wonder how many times these early affirmations actually hold true? I would guess not as often as one would hope.

Which is exactly why I am going to avoid making too many pledges about what type of mom I am going to be and what I will and will not do. Sure, I have a basic idea and I know the certain values I want to instill in my little Pippa. However, it is silly to think I have everything figured out already. I will do what works and fits into my overall ideals as the time comes.

That being said, there are three things I know for sure that I will not do when I am a parent. (If you can’t tell as you read the following, the inspiration for this blog struck me while I was walking through the mall parking lot to grab lunch this afternoon).

• Everyone, here me now when I say I will NOT drive a minivan. Useful and functional…. Yes, maybe. But a nice cross-over or SUV can serve that same purpose without the instant soccer mom image.

• I will NOT put a “Baby on Board” sign in my window. Those things drive me nuts. All I can think is, “Well good thing you told me that, because otherwise I was planning on running you off the road!”

• I will NOT put a stick figure family in my rear window. Although, I have always thought it would be pretty funny to do that with one female decal, and about 50 cat decals, just so everyone would think I am a crazy cat lady.

 

 

Please feel free to call me out if in the future I am doing any of the above, and remind me of this very post.

 

You Can't Do That! (the Pregnancy "No-Nos" I Miss Most)

There are many joys that come with pregnancy, such as.....

The amazing love you feel for the little bean growing inside of you.
If you are lucky, your skin will get the wonderful “pregnancy glow”.
Your hair will most likely become luscious and thick, and your nails will be stronger than ever before.
As your baby bump becomes more evident, you will put a smile on a stranger’s face, and you will beam as they ask you questions about your due date, if you are having a boy or girl, etc.

You will celebrate this miracle with your closest family and friends, and you will oooh and ahhhh together over the teeny tiny baby clothes received at your shower.

 

Yes, there are many joys of pregnancy.
 

There are also many things you have to give up. And those things suck. Here is a list of the things I miss the most:

• Caffeine – This sacrifice has been the toughest, because I love my coffee bold and strong in the mornings. I still wake up craving Stabucks’ Italian roast made in my French press, but instead I unsuccessfully attempt to fool my body and taste buds with a decaffeinated blend. (FYI, some studies suggest up to 200 mg of caffeine will not harm your baby. Admittedly, I have had an occasional cup of regular….but I do believe it is best to just avoid caffeine altogether).

My morning love

 

• Alcohol – First of all I miss wine….there is nothing like a nice full-bodied cabernet sauvignon or a smooth malbec after a long day at work. Of course, let’s not forget beer, specifically, an IPA that is more bitter than a woman who was left by her husband of 20 years for a young, buxom blonde and more hoppy than Easter.

• Sushi – Spicy tuna rolls have never sounded more delicious. Fresh, melt in your mouth yellow fin tuna…Need I say more?

• Hot Yoga – I used to love attending classes with my favorite girls, but this is another pregnancy no-no (along with any other vigorous exercise), since it raises your body temperature and heart rate significantly. Also, non-prenatal yoga classes such as the ones I was attending often involve:
• balancing poses (which should be avoided due to the risk of falling),
• deep abdomen stretches and exercises (which should be avoided since ligaments relax during pregnancy and there is risk of pulling/straining muscles),
• lying on the back poses (which should be avoided for prolonged period due to pressure from your enlarged uterus and fetus on the vena cava, a vein that returns blood to the heart ),
• and lying on the stomach poses (which are obviously pretty much impossible with a pregnant belly).

 

Wheel Pose

• Deli Meat – I would kill for an Italian sub right now, or a ham and cheese on white bread, or a turkey club. Unfortunately, I can't due to the risk of listeria (which is funny, because every outbreak I've heard of recently has been related to produce, NOT deli meat!)

• Stomach Sleeping– I guess this isn’t something that is necessarily “against the rules”, but simply becomes impossible as your belly grows. Up until about 16 weeks I was still able to sleep in my normal position, but now I have been resorted to side sleeping, supported by a heap of pillows.

 

My pre-pregnancy sleeping position

• Pepto Bismol – Some of the many glorious side effects of pregnancy are indigestion, nausea, and heartburn. Pepto would be the perfect cure, except it is not recommended for pregnant women…. Go figure!

• Runny Eggs – I am usually a scrambled eggs girl, but every once in a while I crave something like Huevos Rancheros…..with yummy, oozy, over-easy eggs. But due to the risk of salmonella, I am not supposed to indulge in this over the border delight.

I think that about sums up my list of lamentations. Is there something I didn't mention that you missed while pregnant?

The "R-Word"

You may have missed it, but in the news recently was this tweet made by Ann Coulter (see below) and the response from Special Olympian John Franklin Stephens. This really got me thinking about the use of the word “retard” in today’s society.

 

 

While I am not defending Ann’s comment or saying she wasn’t wrong in her choice of words, part of me wonders her actual intention in the phrase. Stop and think for a minute about how often you hear people (regretfully myself included) saying, “Oh, I am such a retard; I did blah, blah, blah wrong,” or “That assignment the teacher gave us is so retarded!”

 

This interchangeable use of the R-word for something we perceive as silly, stupid, or of the like, has become extremely pervasive in the vocabulary of today’s generation. Heck, even the Black Eyed Peas made a very popular song called “Let’s Get Retarded” (later retitled to the more radio friendly “Let’s Get it Started”).

 

Thinking about the aforementioned song, what is the underlying message? Simply, the BEPs are using “retarded” as a synonym for (extremely) intoxicated or going all out crazy /partying. These actions are characterized by a disregard and ignorance of consequences, incoherence, low coordination, and flat out inane behavior. Therefore, it can be reasoned that the BEPs are saying that people considered medically “retarded” have those characteristics. I doubt that the song writers purposefully intended to make fun of the cognitively impaired, but isn’t that exactly what the song does?

 

One can argue that it is just a figure of speech; that it is only slang. Those excuses are only half true, however, because it while it is slang it is also a form of hate speech. This might seem like an extreme assertion at first, but consider the definition of the term:

 

“Hate Speech is, outside the law, communication that vilifies (belittles, criticizes, etc.) a person or a group on the basis of color, disability, ethnicity, gender, nationality, race, religion, sexual orientation, or other characteristics” -From Wikipedia.

 

To me that pretty much describes the use of the R-word in today’s culture, which unfortunately has become so common that no one stops to think of the group it is disrespecting and demeaning. Intentional or not, it is a put-down to the intellectually disabled.

 

As I mentioned above, I have been guilty of using the R-word many times myself, and therefore I am not intending to criticize everyone that uses the term. I merely want to share my thoughts about something that I never took the time to consider until the issue hit close to home.

 

 

 

 

Honestly, deep down I have always known it (the R-word) wasn’t appropriate, considering I knew to filter my choice of words while in a professional setting. Regrettably I wasn’t so careful about using the term around other people. I look back and wonder how many people I might have inadvertently hurt by using the R-word, and wish I could apologize.

 

My hope for the future is that more people realize the hurt certain words can cause, even if they don’t mean them to. I will have to be an advocate for my daughter as well as help her become her own self-advocate. Does this mean I will call people out when I hear them use the R-word slangily? Maybe, maybe not…I suppose it depends on the situation.

 

What it does mean is I will at the very least modify my own language, and this is not limited to the R-word.

(Gay is another commonly used word used in a similar way).

 

 

 

Heart of the Matter, Part 2

The Echo

A few weeks ago I finally had the fetal echo(cardiogram) that I mentioned in my first Heart of the Matter post. The echo is simply a sonogram in which they look at the heart in detail.

My wonderful boyfriend was able to make it to this appointment, and I was very thankful for that. Since he lives so far away, this is only the second appointment he has been to. We knew the doctor could potentially tell us serious news about our daughter's heart, so there was a lot of anxiety walking into the ultrasound room....now a very familiar place to me.

As usual the technician began the appointment by squeezing the warm gel onto my ever growing baby bump. She picked up the wand, and in a few seconds little Pippa appeared up on the screen. The technician did her best to make us comfortable as she went about her assessment. The small talk was not enough to keep me from wondering what every click she made meant.

After about a half hour of taking all sorts of pictures and videos of our girl's heart, she left the room to get the doctor. He came in and picked up the wand, then began repeating a lot of the same things the technician did. As he was doing so, he and the technician exchanged medical talk that was beyond my understanding.

21 week sonogram... Pippa salutes!

Suddenly, I became very flush and lightheaded. I am not sure if it was the anxiety of the appointment, the now forty-five minutes of pushing and prodding by the sonogram wand, Pippa's kicks and punches back at the wand which was apparently disturbing her, or all the heat being generated by the equipment, but I felt as if I was about to either vomit or pass-out. The technician obviously noticed my discomfort, which I was trying to hide so the doctor could finish up. She began to fan me with a folder she was holding and I rolled onto my side a bit, which marginally alleviated some of my dizziness.

The doctor finished up quickly, and I slowly began to regain my composure. He then started to tell us what he had seen. Unfortunately, he didn't have any conclusive answers. The doctor told us he was suspicious based on what he saw that there was a heart defect, but the heart was still too small for him to be sure and make a definite diagnosis. He referred us to a pediatric cardiologist, and said we should schedule with him in approximately three weeks.

That appointment was on Friday.

Another Echo

It progressed very similarly to the first echo, although I was alone at this appointment. The faint feeling even returned about thirty to forty minutes into the echo. From this I conclude that anything over a half hour is too long for a sonogram. Luckily this time there was a tower fan in the room, and once this was turned on and pointed directly at me I felt tremendously better.

Unlike the first exam, however, the cardiologist had answers for me about what is going on with Pippa's heart. It was not the news I was hoping for, but the news I had been bracing myself for.

The Diagnosis

The doctor told me that based on what he saw, he is quite certain that Piper's heart has an AV Canal defect. As I mentioned in the first Heart of the Matter post, this is the most common heart defect in babies with Down syndrome. What this means is the septum of the heart (the part dividing the two left chambers and the two right chambers) is not complete. Also, there should be two separate valves between the top and bottom chambers (the atria and the ventricles), but due to the incomplete septum there is just one large valve. This defect allows for co-mingling of the blood returning from the body and the blood returning from the lungs.

 

Normal Four-Chamber Heart
 



Heart with AV Canal Defect



Pippa will need open heart surgery around two to six months in order to fix this defect, but the doctor explained that the defect will not affect the rest of my pregnancy or her birth. The doctor also assured me that the surgery has an extremely high success rate, and her Down syndrome will not increase the risk of the surgery.

Even so, I cannot help but be worried about what the future holds. I am trying to just relax and take it one day at a time, but the thought of my little girl undergoing such a serious surgery at such a young age terrifies me. I know that Piper Grace is a fighter already though, and she is strong like her momma. In the meantime, all I can do is stay calm and carry on.

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.

The Dreaded Elastic Waistband

I don’t know about you, but the thought of elasticized waistbands make me shudder. It may be a bit silly, but the large, expandable panels of maternity clothing were another reason I never wanted children. This by no means was a deciding factor, and had more to do with the thought of a pregnant belly in general. It just seemed so…..creepy (stretched out skin and protruding belly button = gross)!

Note this is NOT my belly..... but how freaky (and maybe a little bit amazing) is that foot print!?

It is a little less weird now that I am actually experiencing it myself, and I realize this sacrifice of my body will be totally worth it. Nonetheless, this awareness does not help the limited fashion options I am suddenly left with.

It also seems that maternity clothes are so expensive for something I will only wear for a few months. Though my mother may beg to differ, I am actually quite frugal when it comes to spending money on clothes. Don’t get me wrong…..I will splurge on certain items, but only practical things such as a pair of jeans that will make me “bootylicious”.

Elastic-paneled pants do not have that effect, which is exactly why I don’t want to drop half a paycheck on a new wardrobe. Unfortunately I will have to start buying some maternity clothes soon. My regular clothes are almost unwearable, even with the tricks I’ve been using, such as:

• The hair tie trick – In order to maximize the time I could wear my normal pants, I have taken a hair tie and looped it over my pant button, through the button hole, and back onto the button. Adds an extra inch or two to the waistband!

• Belly Bands – I purchased a couple belly bands and they were the best investment ever! It is basically an elastic panel/tube that you can pull up over your unbuttoned pants to keep them up and smooth everything out.

• Flowy Dresses - I have always loved a nice dress, and lately there has been even more reason to wear them. They are the perfect way to be comfortable, and I don't feel as slovenly with a pretty frock on.

So it looks like it is time to go shopping! I discovered an awesome second-hand store that recently opened here in Charlotte, Clothes Mentor. Unlike many consignment shops, they actually have a maternity section.....score! I bought a few items while there with some friends, but I definitely will be returning to see if they have any new stock.

At the very least, now I know a place I can sell any new clothes I purchase after little Pippa is born!

Happiness is a Pumpkin Muffin

In case you missed it, yesterday was the first day of fall. I couldn't be happier, because this is my favorite time of year (and not just because my birthday is in October). Autumn means cable sweaters, cozy scarves, comfortable boots, crisp weather, colorful leaves. It also means pumpkin everything.... can you say yummy?

Being pregnant, of course I had to satisfy the pumpkin craving that hit me yesterday. I initially thought of making bread. Then I realized I didn't have a bread pan, and I was missing a lot of the ingredients included in the recipes I was finding. Yes, these are easy fixes, but I was being lazy and wanted (almost) instant gratification.

Suddenly, I remembered the perfect recipe for pumpkin muffins. It was one my mom had shown me, which she had got from Weight Watchers. Here is it:

Easy-Peasy Pumpkin Muffins

Makes about 24 mini muffins

Ingredients

• 1 can (15 oz) of 100% pure pumpkin
• 1 box cake mix
• Spice Cake or Carrot Cake work best in my opinion, but you could also use White Cake or Angel Food
• Pumpkin Pie Spice to taste
• If using the White Cake or Angel Food, you will definitely use more spice in order to achieve the perfect flavor

Method

• Preheat oven to 350 degrees
• Lightly grease mini muffin tin
• Mix everything together in a large bowl
• Scoop mixture into muffin tin
• Bake for approximately 12-15 minutes
• Enjoy!

Pretty simple, is it not? Pippa was certainly happy with them :)

They are super delicious, and stay moist for up to a week. They also freeze really well!

These little muffins are surprisingly healthy, too. Pumpkin has a ton of fiber in it, and the cake mix isn't too bad when you don't add all the oil and eggs. I was even thinking for the future mixing up my own "cake" mix using whole wheat flour. It would be super easy to make a batch of just the dry ingredients, pre-portion it, and keep it in my pantry for the next time a craving hits.

If you try out this recipe, let me know what you think!

What Causes Down Syndrome?

One of the foremost questions in my mind when I first found out my baby’s diagnosis was, “How did this happen? Was it something I did?"

I know my boyfriend was thinking similar thoughts, and blaming himself since he has a cousin with Down syndrome. In fact, when the doctor was initially telling us about all the screening tests offered, I wasn’t quite sure I wanted any performed. My boyfriend insisted, however, since my insurance covered the tests and he didn’t have much faith in his genetic line. This concern was despite the doctor’s opinion that his cousin was a distant enough relation that it was highly unlikely the Down syndrome would be inherited.

 

Three Types of Down Syndrome 

 

What I didn’t know at the time, and what wasn’t explained until after I learned the diagnosis, was that there are actually three types of Down syndrome, or Trisomy 21: Nondisjunction, which accounts for approximately 95% of all cases; Mosaicism, which accounts for 2-3% of cases; and Translocation, which accounts for the remaining cases and is the only inheritable type. My little girl, like the majority of those with Down syndrome, has Nondisjunction Trisomy 21. The genetic counselor briefly explained to me that this is due to the failure of chromosome 21 to separate which results in 3 copies in the affected individual.

 

It wasn’t until I got back home and fired up Google (or maybe it was Bing), that I started to truly understand how this occurred. I needed to have answers, because I couldn’t help but blame myself for causing my daughter’s Down syndrome. After all, I had done quite a bit of drinking between my sister’s bachelorette party and wedding before I realized I was pregnant. I had convinced myself that this is what caused my baby girl’s extra 21st chromosome. It may sound strange, but somehow it was easier to take the blame instead of just admitting that things beyond my control will just happen. What I learned made me realize that nothing I did caused the Down syndrome; it was then I began to truly accept the diagnosis.

  

Cause of Nondisjunction Trisomy 21

 

(This is the part of the post that seriously starts to nerd-out, so bear with me).

 

Rather than try to narrate the entire process which results in Down syndrome, I created a few diagrams based on my research. I tried to keep it as simple as possible, because most of us took biology a loooooong time ago (and probably don’t remember much about the following processes). Anyway, the following 3 diagrams depict how reproductive cells (sperm and ova) are formed. The first shows the normal division of the cells, and the next two show division of cells with nondisjunction (which causes Down syndrome).

 

You will see that the determination of Trisomy 21 occurs before fertilization. Researchers have yet been able to determine why this happens, although there is a link with maternal age. Oh, and just in case you forgot, a human should have 46 chromosomes total, 23 from each parent.

Here is how sperm/egg cells are normally produced (colored circles are the cells, and the number inside represents the total number of chromosomes):



It isn't really important for the purposes of this explanation, but notice that in the normal production of sperm cells, 4 gametes (sperm) are produced from the initial parent cell. This is in contrast to ova production, in which only 1 gamete (ovum) and 3 polar bodies (basically junk material) are produced from the parent cell.

These next two diagrams show the production of sperm/egg cells which will result in Down syndrome:



In the above representation, all of the resulting gametes are affected. However, only the ones with the extra chromosomes (24) are likely to produce a viable pregnancy. The child will be affected with Down syndrome.




In the above representation, half of the resulting gametes are affected. Again, only the ones with the extra chromosomes (24) are likely to produce a viable pregnancy and the child will be affected with Down syndrome.



Understand now?

A couple notes I would like to add.... Nondisjunction occurs 85-90% of the time during oogenesis, which means that the majority of Trisomy 21 cases are due to an extra chromosome from the mother. Also, I mentioned below the pictures that the lack of a chromosome would not likely produce a sustainable pregnancy. This is true in regard to the 21st chromosome. However, a pregnancy can be carried full term if the nondisjunction occurs to the 18th chromosome and the gamete with the missing chromosome is fertilized. This is called Turner's syndrome.

So what about the other types of Down syndrome?

Mosaicism occurs after fertilization when the cells begin to divide and multiply. Some of the cell divide normally, and some of them don’t. This results in an individual having some cells with the normal 46 chromosomes, and some with an extra copy of the 21st chromosome.

Translocation, as I mentioned earlier, was the only inheritable type of Down syndrome (although it can occur sporadically as well). When it is inherited, a parent carries a translocated chromosome; in the case of Down syndrome this means one of the chromosomes from the 21st pair is attached to another chromosome, usually the 14th. Even though the chromosome is in the wrong spot, the parent still has the correct number of chromosomes and therefore does not have Down syndrome. However, during meiosis this translocated 21st chromosome is copied along with the 14th into the gamete, which results in Down syndrome. The individual will have a normal pair of the 21st chromosome, and third copy attached to chromosome 14.

I also will point out that all types of Down syndrome affect an individual the same way, and only a genetic test can positively identify which type an individual has.

Phew…. I hope all that makes sense! I apologize for the technical nature of this post, but I wanted to share with those that were curious how Down syndrome actually occurs. Also, if you know someone with Down syndrome or who is about to become a parent of a child with Down syndrome, you will now have some knowledge of the causes.

A Short Story

Someone posted this story on a Facebook group for parents of children with Down syndrome, and I had to share it on here. I hope you all enjoy!

 

GOD CHOOSES A MOM FOR A DISABLED CHILD

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of disabled children. Did you ever wonder how mothers of disabled children are chosen ?

Somehow, I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

“Armstrong, Beth; son; patron saint, Matthew.”

“Forrester, Marjorie; daughter; patron saint, Cecelia.”

“Rudledge, Carrie; twins; patron saint… give her Gerard. He’s used to profanity.”

Finally, he passes a name to an angel and smiles, “Give her a disabled child.”

The angel is curious. “Why this one, God ? She’s so happy.”

“Exactly,” smiles God.

“Could I give a disabled child a mother who does not know laughter ? That would be cruel.”

“But has she patience ?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and Independence. She’ll have to teach the child to live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.”

God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps, “Selfishness ? Is that a virtue ?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word.’ She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it ! When she describes a tree or a sunset to her child, she will see it as few people ever see my creations.

I will permit her to see clearly the things I see — ignorance, cruelty, prejudice — and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint ?” asks the angel, his pen poised in midair.

God smiles. ” A mirror will suffice.”

Heart of the Matter

Walking into my most recent doctor’s appointment all I could think was, “What if he sees something wrong? Will my baby need to have open heart surgery? Will she be okay….? Will her heart be strong enough for her to make it full-term and through delivery?”

Cause for Concern

Now I wasn’t just being crazy and worrying for no reason. After finding out my daughter’s diagnosis, I started looking up all the information I could as what it (Down syndrome) would actually mean for her life. Sadly, most of what I knew about Down syndrome is what I learned from TV shows. I knew certain physical characteristics such as upward slanted eyes and shorter statures, and of course I was aware of the developmental delays. The more I read, the more concerned I became. Not about the challenges of raising a child with DS, but about her health in general.

One of the more serious issues she could possibly face is a heart defect. Approximately 50% of all children with Down syndrome have some type of heart problem, the most common being an AV canal defect (atrioventrucular septal defect). This is basically a hole in the heart between two of the chambers, an atria and a ventricle. Holes can occur in other places within the heart as well, and each is termed differently (ASD, or atrial septal defects; VSD, or ventricular septal defect; and PSD, or patent ductus arteriosus). The treatment depends on the size of the hole. Children may need surgery, or if the defect is minor then it is monitored as the hole may close on its own.

Since my doctors are well aware of the possible congenital heart problems associated with Down syndrome, they are doing all they can to determine prenatally if there are any complications. Around 16 weeks, I had an appointment for a Level 2 ultrasound, where they looked at all my baby’s anatomy in detail to ensure everything is developing as it should be. More importantly they were looking at the heart for any indications of problems. As I revealed in the opening sentence of this post, I can’t even begin to describe how nervous I was walking into that appointment. I knew so much of my daughter’s future could be based on what the doctor saw that day.

The Appointment

So there I was, laying on the table with my shirt pulled up. The technician came in and squeezed a blob of blue goo onto my little bump. Within seconds, I saw my little peanut up on the screen. I was simply amazed at the sight and was filled with “warm fuzzies". I tried my best to keep those feelings and not let my nervousness overtake me as she started the diagnostic portion of the ultrasound. She did some of the same wiggling, clicking, and measuring that she did at my 12 week appointment, but this time her reactions were much more what I had been hoping for. The arms and legs were proportionally as they should be. There were ten fingers and ten toes. There were two itty bitty kidneys. The facial structure was developing normally. Then she zoomed in for a look at my little girl’s heart, and I could see the tiny muscle pumping away. It looked beautiful to me, but of course I had no idea what a defect would look like.

I glanced at the technician, but she had a poker face this time and I could not gauge by her reaction what she was seeing. She gently excused herself, and momentarily returned with the doctor. He scooted the stool over to the table where I was laying and picked up the little wand that determined so much of the future. The wiggling commenced and soon he was zoomed in on the heart. He clicked a couple times, froze the picture, and began to explain what was on the screen. The doctor pointed out the valves in the heart, and noted that they fully touched each other during this point of the heart beat (which the image was paused on). That was a great thing!!

 



Pippa at 16 weeks

 Sigh of Relief

Based on the ultrasound, the chances of a major heart defect are greatly reduced. The doctor reminded me that the heart is still quite small, and they weren’t able to see everything yet. I will have one of these detailed ultrasounds at every appointment (about once a month), and around 24 weeks the doctor will perform a fetal echo in order to listen for any murmurs that may not be visible on the ultrasound. Although there is still a possibility that my baby’s heart will have an issue, I know I will be much less nervous walking into these future appointments. The bright side to all these appointments is that I have the opportunuity to see my little nugget every time!

Fat or Pregnant?

Have you ever seen a woman and wondered to yourself if she was pregnant, or just overweight? If it is a stranger, no big deal, but if it is someone you know it can make the situation awkward. Although you would love to congratulate her if she was indeed pregnant, it would be an embarrassing situation for both if she had just been eating too many Ben & Jerry’s pints.

The Guessing Game

I bring this up because until recently my manager was the only person at work I told about my pregnancy, and that was just because of the time I was taking off for doctor’s appointments. As my belly started to grow and my waistline began to fill out, I started to wonder if anyone in the office noticed. I actually found it quite amusing to think of someone’s internal dialogue.

I imagined it going something like this, “Man, Meghan is starting to put on a little weight……she needs to lay off the candy bars! Or wait…..could that be a baby bump? Huh…. She isn’t married so that would be so scandalous!”

Maybe it is a bit of a stretch and perhaps self-centered to think that my coworkers would really care that much about my business, but I know how much everyone loves gossip. Either way, it gave me entertainment to keep my little growing nugget a secret.


My baby bump

Interestingly enough, I have only put on a total of about 5 pounds so far. Looking in the mirror, I think it looks like much more. I guess it is the way my uterus is expanding, therefore squishing other internal organs to the side to make room for itself. Especially during the first 12-16 weeks I had a soft and doughy pot belly instead of a nice and hard bump. It was actually quite frustrating not being able to button my pants even though the numbers on the scale had barely moved…. I felt so fat! Now that my belly is firming up I actually feel more pregnant, and surprisingly that is a very good thing.

Why My Daughter Will Have a Fluffy Bum

Sometime last year, a coworker of mine told me how he and his wife recently decided to start cloth diapering their three month old son. Immediately I thought of the white square cloths all folded and pinned, and thought this was ridiculous way to diaper a child in this day and age. My colleague surely saw the look of surprise and confusion on my face, because he promptly began to defend the decision.

He told me the main reason was due to a persistent diaper rash that wouldn’t heal, no matter what remedy was tried. They settled on trying cloth diapers after exploring the options and talking with fellow parents. He also began to tell me all about the “modern” styles of cloths diapers. I only half listened since I had no intention of ever needing that information, but I did hear enough to learn that cloth diapers aren’t what they used to be. That and cloth diapers give his son a fluffy bum.

Fast forward to now.....and suddenly I am in my coworker’s position and explaining my decision to cloth diaper my little girl on the way. As I progressed in my pregnancy and started to think of all the upcoming decisions I would have to make about parenting (there are so many!), I recalled the conversation between my coworker and I. Without hesitation I fired up the Google search engine to see if cloth diapers were as great as he made them sound. Anyone that knows me can tell you that I will research the heck out of anything before I make a decision; I am simply not comfortable without some good, hard empirical evidence. What I found was both surprising and convincing. For me it came to three major reasons, which I will briefly touch on.

 

 Number 1: Cost Savings.

Anyone who has children (and even those that don’t) know children are expensive. One of the major expenses in the first couple years of life are diapers. Of course there are a few variables to consider, but based on the information I found $2,000 is a conservative average for money spent on diapers from birth to potty training.
Compare that to cloth diapers. The cheapest option will cost you about $250, and the most expensive option can run about $800. You should also figure the cost of washing all these diapers, which I have seen calculated around $400. Right off the bat you can see a see a cost savings of anywhere from $750 to $1,350!

It should also be considered that well taken care of cloth diapers have great resale value. Depending on the type of cloth diaper and the condition, they can be sold for 50-75% of the original price. Again being conservative, that would be an additional $125 to $400 savings. On the other hand, if you have a second child then you already would have all the diapers you need……that would be an instant $2000 savings!

Number 2: Chemicals in Disposables.

I wouldn’t consider myself hippie by any means, but something about this pregnancy has made me especially conscious of all the chemicals we are exposed to in everyday life. I have become a lot more interested in natural options and any alternatives to super-processed and mass produced items. As far as disposable diapers go, I had never thought much about the chemicals they contain or those that were used to manufacture them. I am not trying to imply that anything about them is dangerous, only that there is a lot of stuff I can’t pronounce that goes into them.

It is not uncommon for parents to being changing their little one’s diaper and find a whitish goo everywhere, only to realize it is the absorbent gel from the diaper. You know, the same type of gel that come inside those little packets in shoeboxes that say “DO NOT EAT”. (Side note: Remember that episode of Seinfeld where Kramer dropped one of those silica gel packets in the salsa at the clothing store?) Anyway, I don’t particularly like the idea of something like that being in contact with my baby girl’s skin.

 

Number 3: The Environment.

Environmental reasons can partly be related to above. I touched on mass production and the chemicals used in diapers, and I can only assume the processes used to make disposables cause some waste and pollution. I am not going to get into too much detail on this topic, as I really haven’t looked up the actual byproducts or such of diaper-making production. Therefore anything I say is pure speculation, but it seems like a reasonable assumption.

What is not a not an assumption, however, are the millions of diapers sitting in landfills. Since the outer liner is made of plastic, it will take a disposable at least 500 years to decompose. Considering all the babies getting changed every minute, that’s a lot poop! (Well, I guess the poop itself would biodegrade, so really it’s just a lot of garbage). Either way, I do my best to reduce my footprint and keep our earth clean. Choosing cloth diapers is just another way of doing so.

Now believe me when I say I am aware that cloth diapers are a little more work and effort. I understand that poop is stinky and messy, and that rinsing off a cloth diaper isn’t exactly a picnic. That doesn’t bother me though, because I realize that sometimes the best choices may not necessarily be the most convenient. A simple metaphor: Just because stopping at McDonald’s for dinner is quick and easy and doesn’t make a mess of your kitchen, it doesn’t make it better than a nice home-cooked meal.

On that note (comparing poop to food), I think I’ve said enough until the next time.

The Good, the Bad, and the Ugly

From the moment those two pink lines show up on a home pregnancy test, most women experience feelings of happiness and wonderment. It took me a few weeks to reach those emotions, since this pregnancy wasn’t planned (prior to this I never even wanted children). Surprisingly the initial shock did wear off, and excitement slowly overtook that “oh shit” moment. It wasn’t long before I was head over heels in love with the little nugget growing inside of me, and I couldn’t imagine my life any other way….

Then came the diagnosis of Down syndrome....it threatened to steal the joy I had so recently claimed. But I was determined to not let the grief overtake me, and I refused to live the next six months with a Nancy Kerrigan attitude ("why me?!"). Through the best support system a girl could hope for, I found the strength and courage to suppress the fear of the unknown, and continue to “enjoy” my pregnancy like any other women would. Note the quotes around the word enjoy….. They are purposefully inserted due to the plentiful and not so lovely side effects I've been experiencing. You know, the ones that really make a pregnancy miserable. Please see below:

The Symptoms

                (Warning….. the following may be TMI)

• Slow digestion is a polite way for me to describe how meals usually stay with me for longer than I would care them to, if you catch my drift. It is always fun, however, after things finally get moving to step on the bathroom scale and see how much weight has been instantly lost….. “Three pounds, heck yeah!”

• An arguably positive symptom, my breasts have grown to new proportions. This is a welcome thing to some women, but I, on the other hand, was a pre-pregnancy D cup.....I am honestly terrified to think of how big they will be when milk starts to come in. Add to this breast tenderness and soreness, and there is a strict “look, but don’t touch” policy.

• Thanks to my growing uterus pushing on my bladder, I have been peeing more frequently. I feel like I run to the bathroom more times in a day than I used to in a month. I would write more about it, but I gotta go……

• Who knew that bleeding gums was also a normal side effect? That metallic taste is not the most pleasant thing when I am brushing my teeth. From what I’ve read it has to do with the increased blood supply in my body.

• In addition to the above I have been getting nose bleeds when blow my nose. Like bleeding gums, this is due to all the extra blood. I am slightly worried someone may think I have a cocaine problem.

• I also have been a bit more moody than usual. I blame the hormones and refuse to say more on that subject, or else I might have to kill you. Then cry hysterically about it for an hour. Then start laughing like a lunatic.

• Lastly, the fatigue......I'm too tired to write more about it. Plus, I think I have to pee again.

The above list is by no means a complete list of symptoms, but they are the ones that have affected me the most. Obviously omitted is morning sickness which is one of the most widely associated symptoms of pregnancy (and a misnomer, as it has no discretion as to what time of day it will strike). I happened to be one of the lucky ones that never suffered this constant queasiness. There was an occasional bout, but I suspect it had more to do with my food choices (an entire box of Kraft Macaroni & Cheese and a bag of Sour Patch Kids sounded delicious at the time).

All in all these symptoms are welcome reminders that my pregnancy is still just that, regardless that my baby has an extra 21st chromosome. And this same lesson will apply once my little girl arrives… she will be more like other children than different. So for now I am going to "enjoy" all aspects of the next 6 months... the good, the bad, and the ugly.

My Mission Statement

Although I have already written a couple posts, I would like to introduce this blog in a more proper manner. The subtitle pretty much says it all; I will be writing about my pregnancy and eventually about raising a child with Down syndrome. If you have read my first two entries you know they were very personal and ventured into some deep emotions. Not every post will be that way…I want to be able to capture all aspects of this journey. In the future expect ramblings that reflect elation and joy, fear and apprehension, silliness and lightheartedness. Above all each one will be honest about my experiences in hopes to inspire, educate, or just entertain. Thank you for taking the time to visit my page; I hope you will return and follow me on my adventure into parenthood!

Much Love,

Meghan

A song I feel is quite appropriate :)

A Choice?

I will start this post off by offering one more statistic:


Over 90% of babies diagnosed prenatally with Down syndrome are terminated

Abortion?

I don’t know about you, but my stomach literally turned when I read that fact. It just didn’t seem like it could be real…but sadly it is. I am not here to argue the basic premise of pro-life or pro-choice, because I do believe there are situations where woman should be given full control over their own bodies. What does bother me is that 90% had already made the choice to continue the pregnancy.

I make this assumption because a CVS to confirm diagnosis of Down syndrome is performed around 11-13 weeks, or an amniocentesis is performed around 15-18 weeks. If those women didn’t want the baby I doubt they would even be that far along in the pregnancy, or for that matter even be undergoing the tests in the first place.

So why if they had previously chosen life, do they suddenly decide that life wasn’t worth a chance anymore? Of course I can’t answer this question myself, but I do have a theory. Their image of the perfect family, perfect children, and perfect world has been invaded. Thoughts of anguish and sorrow have surrounded them. Preconceptions of what a child with Down syndrome will be ambush their conscience and reason, and they forget that first and foremost she will still be just a child…their child.

Of course, I am not going to pretend it is the easiest path to walk down. There will be unique hardships to face, but there will also be unique joys to experience...ones that will make the hours spent in physical and occupational therapy worth every minute. In fact, these therapies sessions can be a fun and wonderful bonding experience with your child, and the pride felt when she reaches a goal will be indescribable. Or so I’ve been told (read... check out Noah's Dad).

Perfection?

The thing I ask then is, what guarantee did these women ever have to believe their child would be perfect? If a doctor could tell them in advance that their child will have colic, severe allergies, juvenille diabetes, a lisp, a birthmark covering a large portion of the face/body, or be anything other than society’s view of "perfect", would they terminate the pregnancy? This may seem like a silly analogy, but isn’t that pretty much what they are doing? The doctor says Down syndrome, but what they hear she will never be be "perfect". I think they are afraid she will look different and never go to prom, go to college, get married, or be view society’s view of successful.

Therein lays the problem. Who says she will never do these things? These are imaginary limits placed on the Down syndrome community that are only bolstered by society’s perpetuation of them. I may be new to this world, but I am determined that my daughter will not be held back because people tell her she can’t do something. I realize that some of those things may not be the norm, but nothing is impossible. In the words of Ralph Waldo Emerson,

“To laugh often and much;

To win the respect of intelligent people

and the affection of children;

To earn the appreciation of honest critics

and endure the betrayal of false friends;

To appreciate beauty, to find the best in others;

To leave the world a bit better, whether by a healthy child,

a garden patch or a redeemed social condition;

To know even one life has breathed easier because you have lived.

This is to have succeeded.”

[I do want to point out that I am ignoring some specific health concerns of babies with Down syndrome; for example, approximately 50% of babies will have some type of heart defect. However, according to my research and discussions with the doctor these conditions are either treatable by surgery, will just need to be monitored, or will resolve on their own. Again I ask though, what guarantee did these mothers have that any other child wouldn’t face some type of health issue? Also, there may be an argument of additional financial burden. However, I have found through my research that most states have sponsored early-intervention programs. In addition there are supplementary insurance options which are not always income based, or based on income levels well above what typical welfare-type programs are based on].