Sunday, March 9, 2014

My Joy

In spite of all her drama and whining at times, I am so in love with this little girl.
She is so smart.
She is fiercely independent.
She has a caring spirit and loves to take care of her friends.
She loves to entertain. She will sing and dance in front of 1 person or 200.
She has her own sense of style. We often have to take an extra peek into the dressup box before leaving the house so she can find that perfect "ti-wawa" or "neck-a-lice" to complement her outfit.
She is learning to stall at bedtime. Requests for snuggles, drinks, snacks, ointment for her "tapped" lips, feed the fish, find another blanket, and a million times asking us "What's that noise??!?"

I love the little person she is becoming. It is so fun to watch her grow and change, to watch her likes and preferences form. She keeps us on our toes, for sure!

Friday, January 31, 2014

Checking In

It has been 5 and a half months since we held our baby and said hello and goodbye in the same breath. Sometimes it feels like seconds ago, and other times it feels like another lifetime.

For the most part life has gone on. I have been back at work since September, Aly is growing and changing by leaps and bounds, and life at home tends to fall back into the same regular routine. We are working on potty training with Aly, which is taking a lot longer than I had anticipated. Of course. I really need to learn to stop making plans for these kinds of things ;)

But part of my heart is still so empty, still very broken. And for the last two weeks it seems like relentless hits just keep on coming. The dozen random notes to let me know people are thinking of my precious baby and still saying prayers for me bring me to my knees. I am so grateful that people still remember. But it brings things back to the surface all over again (yet still worth it to know that others know Aubree and miss her too).

And then there are the very painful triggers. This past week I was caught off-guard at work in a meeting with people I had not seen in several months, if not years. "Oh, Sarah, how's the baby?" Such an innocent question to ask. Yet, it left me sitting there completely befuddled. Baby? What baby? I don't have a baby? Oh, Aly? She's 2 now, going on 15, and full of little-girl drama. Definitely not a baby anymore!

"No, the baby. How's the baby?" And that's when it hit me. Crap. What do I say? Oh my goodness, everyone is looking at me. Seconds felt like heart was racing and my stomach felt sick. Why was everyone staring at me? How long was I sitting there with my mouth open and my eyes fixed on the wall in the background? What do I say to someone I barely know, let alone a room full of strangers? "Um, she passed away," was all I could mutter, while looking at the ground and wishing I could run away.

But the questions didn't stop there. "How did she pass?" Ok, normal question. This one I could answer. Her little heart was broken and couldn't make it. "So, are you trying again?" When I stalled on answering again the question was asked repeated. Several times. WOW. Searing pain coursed through my body as I began to panic. First of all, from co-workers I barely know, how is a question like that appropriate? Secondly, that is a really painful topic for me right now. The truth is that it's been left up to God's timing since we got the clearance from my doctor in September. And each month that passes with negative tests followed by a period brings me to tears. I feel like something is wrong with me, even though they say there isn't. I feel like God is punishing me, even though I know in my head this isn't true. Honestly I don't even remember how I managed to answer this question or the several minutes following.

And then, to top it all off, was the seemingly "funny" comment made by an acquaintance. We were talking about kiddos and how they all have very different personalities. Aly is our independent child, and I had stated that I knew Aubree would have been our clingy, needy baby. "Oh, well, guess you dodged a bullet there, huh?" WHAT THE HELL?!?! Yes, we sure did. I am so glad that we aren't being inconvenienced by a healthy, living child. You are right, a dead baby is absolutely preferable to a colicky one. I wish I could have said those things. Instead I just stared blankly for a second and tried to change the subject.

For the most part there are still way more good days than bad. And when the bad times come I am able to re-direct my thoughts and actions most of the time. But there are days when I just can't seem to function. It's always annoying to find a new trigger since I really don't know what it is going to be. The other day I was eating a grapefruit and had to throw it away because it reminded me too much of Aubree. A freaking grapefruit! *sigh*

Saturday, December 21, 2013

So not "Crunchy"

But I really want to be! I would make the worst hippie ever. I really love the idea of natural remedies and treatments. However, my skeptical and analytical side wants to see proof that things will work before I try them. With many "natural" cures there just aren't scientific studies to back them up. And some things can actually be quite harmful even though they are "natural."

However, I have taken a leap of faith over the past six months. Primarily with my personal oral care. Exciting, right?

I've been reading up on natural oral care remedies since I had to get several cavities filled a few years ago. I wasn't quite yet 30 and the dentist was already starting to talk to me about crowns if the cavities kept coming back. I was already doing the requisite twice-daily brushing plus flossing. I really tried to keep my mouth rinsed out and cleaned after eating sweets. And I tried to take my daily vitamins along with a mild effort towards eating healthier. But my teeth kept getting cavities. New ones would appear at every checkup. I was feeling defeated and just assumed that bad teeth were my reality, something I had just inherited and couldn't really do anything about.

Then I started reading up on natural remedies. Home-made toothpastes (these were appealing to my "crunchy" and "frugal" sides) and oil-pulling. But being the skeptic that I am it took me awhile to actually try these things. I first started out by adding baking soda to my toothpaste and focusing my brushing efforts on being more gentle and targeting the gum-line. Then I upped the crunchy-factor and started brushing 50% of the time with a mixture of organic sea salts and baking soda. And then I moved to all salt/soda completely.

What I found is that my mouth felt so much cleaner! I wasn't feeling a build-up of gunk by the end of the day. My teeth felt smooth! And my research (ok, excessive googling) shows that the salt helps to re-mineralize teeth and is actually less abrasive than commercial pastes. I really just liked the fact that I could mix up a month's worth of  "paste" for just a few cents using 2T of salt and 2T of soda. And when swished between my teeth at the end, it seemed to pull out any remaining gunk in my teeth. Flossing afterwards very rarely yielded any nasty bits (when that used to be the norm after brushing with commercial paste). I will say that the salt took a bit to get used to. And it does not leave my mouth with a minty-fresh feeling either. But my mouth does feel very clean and I can eat just about any food after without a weird interaction (toothpaste and orange juice, anyone??).

Yet, my teeth were still a bit sensitive so I started trying oil-pulling. Honestly, this was the one that seemed the most crazy to me in the beginning. Swishing oil in my mouth for 15-20 minutes? And not just any oil, but using coconut oil (which seems to be the flavor of the month amongst my crunchiest friends). To say I was skeptical would be a massive understatement. So I started reading to see what harm it could do. Because so many of these "natural" remedies are also potentially harmful, so I wanted to know what I was up against. Except, this one really had no dangers. The only possible downside I saw was potential yellowing of the teeth from using olive oil. Since I was going to use coconut oil that wouldn't even apply. It was truly one of those things where it wouldn't be harmful and may possibly help. So with that knowledge I started trying it.

I've been doing this now for about 6 months. I just had a dental checkup today. This is the first time in YEARS that I don't have any new cavities!! Ok, I do have a broken filling that will need a follow-up, but nothing new! They spent very little time scraping gunk off my teeth at my cleaning, my gums never hurt, and the hygienist and dentist both told me that I was doing a great job taking care of my mouth. This is the first time that I have ever had a great review at the dentist!! Honestly, the only things that have changed are basically the paste (salt/soda) and mouthwash (coconut oil) that I am using.

So for this skeptical wanna-be hippie, I would say that these two things are definitely worth trying! Your pocketbook and your mouth will thank you :) At the very least there is no harm in trying. And for those on food stamps, this is a great way to use normal "food" items for personal care. Another way to stretch those dollars just a bit further.

**But seriously. I am a mom and random blogger. Please don't take any of this as medical advice! Do your own research/googling first before trying anything. **

Sunday, December 15, 2013

The Season of Advent

This year, the celebration of Advent has really hit me hard. The anticipation of Christ's birth. The promise of hope and redemption for all.

2013 started out with such hope and anticipation for me. We were consciously trying to have another baby. I was counting days and tracking signs. The last few days in January I was taking a test twice a day because I just KNEW that this was our month. And that first day of February those two pink lines answered back. The hope, the excitement, the anticipation of meeting this little person. A little pink heart was placed on the calendar on her due date. How appropriate.

As the weeks went on I would read up on fetal development. Hey, our baby has ten fingers & ten toes! Oh, look, we just grew ears today! We talked about baby names, made plans on how to fit two kids in our little house, and talked to Aly about the tiny baby in Mommy's tummy. That anticipation and hope soon turned to heartbreak and worry as we learned at the beginning of May that our little one would not be with us long.

And in August Aubree was born. Born into a silent delivery room. There were no cheers and no crying baby. Just silence, tears, and hugs as we spent a very few moments with out little girl before having to give her back. We went home empty handed and feeling broken. I feel that this is what God refers to in Genesis when he says that part of the curse of sin is that pain will be increased with childbirth. The physical pain of birth is no picnic, but most women do recover and some even go on to choose to do it again. Ha! But to have to endure that physical pain along with the death of your child is beyond imaginable. To be honest, the depiction of the birth of Christ as a silent event is a horrifying thought to me now.

It has been hard for me this year with the focus of Christmas obviously being about the birth of Jesus. The most joyous event ever. I am having a hard time seeing pregnant women or babies as my arms and my heart ache to hold my daughter. But I have been so struck by the story of Mary. I feel like I see her in a completely different light. I imagine the joy and anticipation she must have felt when she learned that she was going to have a baby. And not just any baby. She was going to be the one to give birth to the Messiah. The one who was coming to fulfill the promise of hope and redemption for everyone. And how her anticipation must have turned to heartbreak as she realized that in order for the world to be redeemed, her son was going to die.

However, it's not his birth that gives us hope. And it's not his death that gives us peace. It's the story of his resurrection. Jesus didn't come to die for the sins of the world and to stay dead. Jesus came to conquer death. Our hope is in the resurrection and the promise that this world is not all we have.

I won't lie, I am sad that Aubree is not here to sit in her bouncy seat and look at the tree all googly-eyed. Or to stare on as Aly "helps" to open presents for everyone. Or to snuggle up on the couch after a morning of busyness and nap the afternoon away. But she is getting to celebrate Jesus' birthday with the King himself! Can you imagine what the celebration must be like in Heaven?

And for Aly, I am having such a hard time reigning in the presents. She's at that age where the things that she enjoys are still so cheap! Crayons, markers, finger paints, new coloring books. They will keep her entertained for hours and only cost me a few dollars. And yet I am constantly reminded of Luke 11:13 as I shop for her, "If you then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give the Holy Spirit to those who ask him!"

Monday, November 11, 2013

Have Patience

Being patient, kind to others, and consciously making an effort to not be selfish seem to be my themes this year. Funny how these lessons really sink in as you try to teach them to a child. I find myself being convicted frequently by my own words.

Aly has been having a rough time traveling in the car lately. Even though she's not quite hit 25lbs yet (but she's close!!), she did hit the height limit for rear-facing in her car seat this month. I was hoping that turning her seat around would make traveling more pleasant. But I am learning that my daughter is just as impatient as I am. Red lights make her WAIL and scream until the car starts moving again. It was very difficult when she was rear-facing and couldn't see the lights, but now that she can see them with me, we've started to make a game of it.

Me: Aly, what color is the light up there?
Aly: It's  red!!
Me: And what does red mean?
Aly: It means: Be Patient. Wait your turn!
Me: That's right :) Look at all the other cars going. They waited patiently for their turn, and now they get to go. Oh look, now our light is green!! What does that mean?
Aly: It's our turn! We can go!

We have this conversation almost every time we come to a traffic light. And even when Aly is not in the car with me, I find myself repeating the same information. It's not my turn, I have to be patient. Take a minute to just relax. It will be my turn in a minute, but for now I get to sit still and be quiet.

This has also transferred over in to how I view the other drivers around me. When I am in a hurry and someone JUST WONT MOVE OUT OF MY WAY, I am immediately reminded that I need to slow down and not speed, that there are other people on the road with places to go and people to see and my personal journey is not any more important than theirs is. And that jerk that just cut me off? Maybe that person is having the worst day of their life and completely zoned out, not thinking about traffic. Lord knows I was in that same place many times over the past six months. Or maybe that person is late to work, or needs to rush home to something very urgent. I find myself thinking more about the other PEOPLE on the road, and praying for whatever circumstances may be happening in their lives right now.

It's amazing to me how our minds can be trained to think like this. At first it was such a conscious effort to stop and redirect my thoughts towards compassion and patience. But slowly over time it is becoming a habit. I hope that I can help to teach Aly to be patient and caring for those around her. And the best way to teach her is to model it myself.

Saturday, November 9, 2013

Why I Gladly Pay Taxes To Support Welfare

"I am tired of other people living better than I do, on MY dime!"

Ughghg. I am so sick of hearing this (mainly from my Republican/Tea Party friends). They perceive that people living on assistance have an easy life. After all, they are obviously not working, right? If I didn't have to go to work and could sit on my bum eating bon bons all day, life would be awesome!

But that's not what life on assistance is like. Sure, there may be a scammer here or there, but the reality is not pretty for most people on assistance. We like to hold up the example of the fraudsters and claim everyone is just like them. But that would be like saying Fred Phelps represents most Christians, or that Lady Gaga is a what most 30-yr old women are like.

I would hope we can all agree on assistance for the elderly and disabled. As a civilized society, I don't feel we should be seeing our elders living on the streets, or our disabled locked away in institutions. What seems to really burn people up are the "fraudsters" and "moochers." So how many people on assistance are scamming the system? This federal study says 91% of all assistance recipients are either 1) elderly (53%), 2) disabled (20%), or 3) working-poor (18%). Ok, then that means 9% of the recipients are able-bodied and should be working, right? Except the majority of that 9% is receiving unemployment benefits (meaning they did work at some point), receiving medical assistance, Social Security survivor's benefits, or Social Security retirement benefits for those 62-64 years old. It is approximately 2% or less that are receiving some kind of assistance that are otherwise able-bodied and able to find employment.

It is easy to hid behind generic statistics and not see the reality of a situation. So I will break down my "reality" using actual data for the county where I live. I am in Jackson County, MO. The average household income for four people is $71,200. Typically this means two adults earning $35,600 ($17/hr roughly) each and two children. To qualify for assistance, the entire household must be earning much less than the average. Let's say we have two adults each working for minimum wage and together they earn $30,576 per year. This is less than half of the average, so surely they would qualify for some assistance. Let's see:

1. Housing - The average two-bedroom apartment in this county costs $780/month or $9,360 per year. That comes out to 13% of the average household's income. For non elderly/disabled, rent vouchers are available once rent exceeds 40% of the household's income. That means a four-person household has to be earning UNDER $23,400 in our county to even begin to get housing assistance. But for our family working at minimum wage, rent is taking up 30% of their monthly income and they don't come close to qualifying for assistance.

2. Food - To even begin to qualify for food assistance, a four-person household can not have an income higher than $29,064.  The household also can not have more than $2,000 in savings. Let's be generous and "give" the family $400/month for food - $100 for each week. To qualify for that assistance, their monthly income can not exceed $893, or a yearly income of $10,716. Our family does not qualify for any assistance, but food is taking up 16% of their monthly income.

3. Utilities - A family of four applying for LIHEAP would have to earn $2593/month or less (so our family would finally qualify for some help here). The max benefit is $800 to help with winter heating bills (available after Nov 1st), and possibly $300 in crisis funding during the summer - but you have to have an active disconnect notice to qualify for this assistance. Let's assume an average electric bill of $75 and an average gas bill of $50 for that two bedroom apartment. That would be $125/month for heating & cooling combined, or $1,500/year. $1,100 in max assistance wouldn't even cover all of the utilities.

This is just barely scratching the surface here. Most of these apartments don't have laundry facilities, so families are in laundromats washing clothes at $2.00/load (that is to WASH - let's assume they take the clothes back home to line-dry). We only have three people in our family and I do four loads of laundry per week. That would be $32.00 per month just to operate the machine at the laundromat. And what about buying those clothes in the first-place?

What about transportation? KC is not the most public-transit friendly place around. I live in a suburb and commute 10 miles each day to work. To find a bus that would take me there, I would have to leave my house two hours before my shift started and I would not arrive back home until at least an hour after my shift had ended. It may be faster just to buy a bike and ride it each day if I couldn't afford to drive.

But let's get back to that average household income. $71,200 for a family of four. How much do they pay in Federal taxes to support these benefits that others are receiving? At $71,200 (assuming NO deductions), they paid $9,854 in federal taxes if they are married and filed jointly, or 14% of their income. But not all of those taxes go to assistance programs. Here's where that money goes:

So breaking down that $9,854 in federal taxes, only 12% is going towards "Welfare" (Safety Net Programs), or $1,182. And our family earning $30,576 working two minimum wage jobs only qualifies for $800 in assistance, but has paid $3,700 in federal taxes, with $444 of that going back to the very assistance programs that helped them.

So do I think that someone living on assistance, on my "dime" of $1,182 per year, is living better than I do on $71,200? Absolutely not! No one denies the fact that fraud exists. But please, let's all give up the stereotype that those on assistance are lazy and just out to scam the system. It does nothing to help the true problem of fraud and merely lets us mask the fact that there is a deep and true need in our society for these programs.

Monday, October 14, 2013

It's Finished

Today we went to the children's hospital for Aubree's autopsy report. I nearly burst into tears walking in to that place, but managed to hold it together. I was able to see the same doc that had treated me and the same neonatologist that was with us when Aubree was born (he personally took her back to the children's hospital for the autopsy when we left the hospital). Seriously, I have never had such a wonderful caring team of doctors before. The actual autopsy showed that she passed away due to her heart stopping, which is what we had suspected. It was only beating at 37 bpm the last time we had seen her on ultrasound so this wasn't a surprise. They did find some other things wrong with her heart that couldn't be seen on the ultrasounds and her other organs had issues related to her heterotaxy. But nothing really significant in light of her more complex issues. The placenta tested fine and there were no clots or infection found that would have contributed to her passing or cause concern for future pregnancies. Most of my questions were for the geneticist. She said that Aubree got two defective "nodal" genes, one each from DH and I. The nodal gene is what tells things where to go early in development when there are just a couple of cells. Having one defective gene is apparently really common, but having two could have caused Aubree's severe heterotaxy (but they can't be certain since apparently there are 60 genes that determine "sided-ness" and they only can test for a few).

It was recommended that DH, Aly, and I get heart echos and ultrasounds of our abdomens to see if any of us have misplaced organs. If we do, our chances of having another baby with heterotaxy are about 50% since DH and I both seem to have this defective gene. If not, then our chances of having another baby with heterotaxy go down about to 5%. Even if we do have misplaced organs (meaning we also have heterotaxy), most forms of heterotaxy are compatible with life and things would most likely be just fine. The chances of having another baby with issues as severe as hers (the worst scenario of heterotaxy known) is still around 1%. So we will do the tests - mainly because we have reached our max OOP and I really want to know that Aly is ok, and that DH and I are ok. But in all likelihood we won't have to worry about this issue again. Unless we hit the freakin' genetic lottery. In which case, we should also hit the real lottery just to even out the karma scales.

The doctors all said they can't tell us when to try again, but that they all personally think we are good to go whenever we feel ready. And they said that my regular OB can schedule all my ultrasounds at CMH in the fetal health center and they routinely assist with care for healthy babies after situations like ours. So we will for sure do our 12-week scan and 20-week anatomy scan there, with an additional heart echo around 24 weeks just to be completely sure.

I went in to today with a really heavy heart, but I walked out of that hospital with a sense of relief and a feeling of closure. Her due-date was yesterday, and her autopsy today. Aly was born the day after her due date and I'd had in my mind that Aubree should have been born the day after her "due date."  The autopsy report feels like the last official thing we did for Aubree as her parents. Now life can move on.