Saturday, October 17, 2009
I've spent five months telling myself exactly that. Well, today I found it.
I've been told repeatedly if David and I were to need anything, we should just simply ask.
Today I am asking. Today I want you to find a sign of hope in your daily life.
Then please tell us about it. You may have to search a little as well. Hope is there though. I promise you.
Today I found hope in the eyes of children at play. Today I found hope in knowing a calm sense of peace and relief from worry far outweighs any sense of grief.
Hope is also my daughter.
Hope Angela entered this world on October 15, 2009 at 2:49pm. Who knew hope would arrive with the darkest hair you'd ever see.
Instead of watching for hope, Hope is now watching over us. She may have entered this world an Angel, but she will never truly leave it.
Tuesday, September 22, 2009
Lately my night time routine goes something like this:
Crawl into bed, settle in, sleep blissfully until 2am.
Wake up wide awake having to pee for the fortieth time.
Lay back down.
Realize pregnancy induced backache isn't going away. Toss and turn trying to get comfortable.
Baby decides to plan trek across the dessert. Is thirsty.
Get up. Get drink. Decide Kool-aid is better than the water you should've had.
Lay back down.
10 minutes later still wide awake. Baby is on a sugar rush after all that Kool-aid.
Wonder to God if baby kicks and insomnia are a sign of things to come or if God is just giving me every last minute I may ever have with Little Angel.
Put that thought out of head. Try not cry. Kleenex is too far away and I finally found the latest greatest contorted position in which to fall asleep.
Pray that God gets me through these last 30 days. Wonder how I managed to make it this far. Silently say a prayer for everyone that's helped us along the way.
That's a little too emotional. Kleenex still too far away.
Try to remember if I turned the dishwasher on or not. Husband needs clean spoons for breakfast.
Ponder baby names. Remember while everyday is good there will be GREAT ones ahead.
Wonder how husband sleeps with his hands across chest, staying in the same position all night, never moving. NOT EVEN ONCE.
Apparently God has an ironic sense of humor. Who knew?
Wishes husband could be pregnant. Consider kicking him in the leg just to simulate the Charlie Horse that's currently running through mine.
Think about what I could do make our baby better.
Can't dream up one rational theory.
Ponder waking up husband to analyze ways of the world.
Remembers waking up husband will lead to someone looking forelornely into his Golden Grahams all bleary-eyed because and confused because a) There are no clean spoons
b) he doesn't do middle of the nights very well.
Decide to let husband sleep. Crabby husbands aren't worth it, no matter the circumstance. They're not coherent at 3:30am anyways.
Look at clock.
One more hour. Thinks maybe it's just a good idea to get up. Time to clean the closet no one ever sees. The one with long lost elementary school report cards and random items that have no home.
Task seems to exhausting. Fall asleep instead.
Hear alarm. 5:15. See the start of a beautiful morning outside of my windows.
Begin the day all over again. Give thanks for what is good ask for help with what isn't.
Wash spoon before husband realizes different and hit start on the dishwasher.
Sunday, September 20, 2009
1) Homemade applesauce. I'm getting good at this.
2) The Card Shower my sister planned for me. David and I know we've been loved and supported on this journey, but it's amazing to the see the kind words and well wishes in print.
3) Coffee. It will always be coffee. It makes everything better.
4) Baby calves. Cute, silly and just wanting to somebody to love them. They're my hope for the future.
5) A certain set of pint-sized family members that learned how to empty cupboards. Love the little clowns dearly and now my tupperware is organized. Maybe not by choice but that's irrelevant.
6) The love and support marriage brings. Even if it is in our own unique way.
7) Golden Girls reruns. Little House on the Prairie DVDs as well.
Please take the time today to think about the little things that make your life enjoyable. They're always there, in spite of or despite the situation.
Saturday, September 5, 2009
It's always amazing to me how life is a series of circles. Life hasn't been lived, the battle hasn't been fought, the victory won until the circle is completed. The circles in life are everywhere. Generations of people overcome the same struggles as the generation before. The moon is a series of shapes leading to one big full circle, before starting over. The wreaths making their way to my door each season signify a pattern of changing seasons. The clock ticks by from 12 to 12 365 days per year, never waivering.
David and I are currently working on closing the circle. Essentially we're back right where we started this journey four long months ago. If you ask either one of us if this is how we thought the circle would be closed, if this how we thought it would end, the answer is a resounding, "NO." If you ask if we're sure of this decision, you'll hear "Yes" ringing loud and clear.
In real life, without the philosophy, all of these analogies translate to, "We're back in our hometown hospital with our usual doctor."
This wasn't a decision we took lightly. We've been to countless doctors. Every file has been read, the research has been combed through all in a valiant effort for some miracle cure; for some answer that would allow us to wake up and have the whole situation be a distant memory.
All we found were eight doctors with eight opinions and no general consensus. More questions and less answers. There was the doctor that didn't read my file before sending us off with more scare tactics. There was the genetic specialist who saw the precious little baby on the ultrasound screen as insurance money. There was the doctor whose miracle cure was to prolong the inevitable. This was no longer an issue of "saving" Little Angel but one of life vs. quality of life.
David and I realized months ago that there is no miracle treatment for Little Angel. We had hit a breaking point where we just want to be in control and at peace with our tough decisions. This doesn't mean we've given up. We just wanted to return the whole situation to God, rather than doctors playing God. We still have our hope and faith, after all it is the greatest treatment.
Nice sentiment right? Makes sense in our heads. However, try finding a doctor that won't call you every shade of crazy for saying it out loud.
After touring Children's Hospital last week, we did find a kind-spirited doctor with a big heart to agree with us. This doctor told us he could perform every heroic measure there was, but the only "save" to this baby was to love her while we had her. The best best place to love Little Angel was back at home in the comfort of everything we know. After all, if this was going to be a miracle baby, it didn't matter what hospital. If this was going to be a baby born with Angel Wings, it didn't matter what hospital.
This wasn't how we meant to close the circle of our little family. However, this is what gives us the most peace and comfort. The lesser of two evils. The best of two bad choices. It's this sense of peace and leaving it to God, that will allow the circle to flow with love, long after it's been closed.
David and I have faced some tough questions from people trying to make sense of our decisions. It's okay to wonder and even judge us. We understand. We've judged ourselves more than anyone else ever could.
Last week we were posed the question, "If you won't let the doctors determine life vs. quality of life, who are we to make that call?"
Well, we're Little Angel's parents. That's who. As parents you just know what's right in your heart. It's amazing how in times of struggle, when faced with decisions you only read about on other people's blogs or see in the movies, that strengh gives you all the answers needed. The answers may not come right away, but they will come to you. They will be the right ones. It could be God. It could be Intuition. Very well a combination of both. Whichever, David and I have been guided through this battle with on outpouring of allies in faith, love, hope and support.
It's not defeat if you can see the hope in the circle.
Tuesday, August 25, 2009
I know it's been awhile since I've posted any updates of great significance. Truth be told, I just don't have much to say these days.
I'm a basket of mixed emotions to be quite honest. I can't explain how I feel, so I'm not even going to attempt to do so. In the past months I've learned to just be honest. I've learned confirming feelings and denying nothing is the best path to survival. There's no sense in rationalizing what can't be rationalized.
On one hand I've made it this far, when doctors told me I wouldn't. Little Angel is still kicking around, happy as can be. I'm fine healthy and strong as ever. I count these blessings and give thanks every day. It's how I maintain my chance at hope.
I'm so excited to meet Baby and see what the future holds. On the other hand I never imagined I could be this scared of anything. I'm a brave a girl after all. Other than the opposums and rodents roaming the barnyard from time to time, not much sends chills down my spine. Except for my own baby.
Then there's the shock of having 58 (or less) days left. While I do the best to enjoy every last minute of this pregnancy while I'm still in control, all the same I just want the whole ordeal over with. I know I know...take my "Mom of the Year Award" away right there. After all, who essentially wishes a baby would just be "over with?" Who refers to their Miracle as an "ordeal." Lastly, Who feels scared of their own baby?
Well.....somedays I do. I won't deny it in the least.
Then the next minute I turn around and have big dreams Little Angel is going to be the greatest Miracle there ever was. I won't deny that in the least either.
As for the doctors, I'm learning to trust blindly. I've come to accept that every doctor has a different theory and a different plan. While some I agree with more than others, I just have to accept they're stating what they think is the best course of action for Little Angel. I can agree, disagree or agree to disagree, but ultimately it's mine and David's decision. It's our baby after all, and we know best in the long run.
The sense of control helps us survive countless doctors appointments, phone calls and pages of research information.
On the same note, everytime I have to speak to a doctor I could throw up. I hate visiting the hospital, I hate hearing about theories that may or may not be true. I hate hearing words like NICU, prenatal death, surgery, brain scan, echocardiogram. Then again, they are just words which will maybe lead us to the best possible outcome.
I'm sure the words on the page today seem like incessant rambling. They probably are. It's what happens when you're feelings are incessant rambling. I just do the best I can to realize my feelings, stay occupied and move forward one day at a time.
Or should I say one baby step at a time.
58 days will be gone before I know it, and with it will be feelings of hope and sorrow, pessimism and optimism, bravery and fear. It's simple faith and the reliance on the terms "we" and "us" that we will get through this.
We have to get through this, full speed ahead, until it's past us in the rearview mirror of Life.
Monday, August 10, 2009
I've always had a soft spot in my heart for 7th and 8th graders. Junior high kids can definitely give me a run for my paycheck, but I enjoy their lessons in contradictions. They're all attitude on the outside; waiting for someone to love them on the inside. Want to be treated like adults and wanting to be told a lame joke at the same time. 12 and 13 year olds can come off as oblivious to the world while at the same posing moral dilemmas and questioning life issues most adults don't even think about.
As a former classroom teacher it was my job to help these students navigate life while being themselves. It was a challenge but I accomplished this through weekly journals. I posed a question and simply graded students on how well they defended their response. There was no right or wrong. There was nothing for me to disagree with. The students came to appreciate this and left me reading more honest answers than Aristotle or Socrates could have ever dreamed up.
I know. I know. Journal writing is a schoolkid's worst nightmare. It was a struggle for some but they did it anyway. The week I posed the questions "What are you greatful for? Where do you need latitude in life?" I had a 100% turn in rate.
When I left full time classroom teaching; being the glutton for punishment I am, I signed up to teach religion at my small-town country church. I asked for 7th and 8th graders.
7th and 8th graders are the same everywhere. They want to be heard and want their thinking challenged. In religion class I adopted my journal writing to the "Gratitude and Latitude List." It was small scale journal writing in a list form with a religious perspective. The Gratitude were things that we needed to give thanks to God for. The Latitude were things we needed to ask God to help us through or to accept us as we are. Some weeks the answers were obvious. The next they were so heartfelt and honest I couldn't believe they were written by the same 12 year old who came in snapping on her gum; testing me with the latest swear words.
As a classroom teacher and religion teacher I was doing what I do best; hoping I was making a difference.
I ran into a former student of mine earlier this week. The first thing he asked about was my very obvious baby belly. As I was telling him the story, he was listening intently. This student as an eighth grader was very intelligent, had a strong understanding of the important things in life but was rather reserved at the same time. Now as a junior in high school, he was a little taller, a little less awkward and a little more outspoken. When I finished with my story he said, "Miss. My thoughts are with you. Have you made your "Gratitude and Latitude List? I still do that sometimes when I'm worried about something."
After the shock wore off of a student remembering one simple assignment, I decided I should practice what I teach (or preach depending on who you ask).
In honor of every student of life who remembers a simple assignment; here is my Gratitude and Latitude List.
I am thankful for the strength to get through each day.
I am greatful to have access to some of the best medical care in the country.
I am happy to be surrounded by close friends and family who do anything for me
I am thankful for polka-dot wall decals that make my baby's room bright and cheery
I am greatful for the motherly intuition that keeps me fighting and hopeful.
I love baby kicks.
I love songs involving Big Green Tractors.
I appreciate my stockpile of chocolate chips.
Give me latitude because I'm not always as positive about the future as I could be.
Give me latitude because sometimes I fear the challenges ahead of me.
Give me latitude because sometimes 74 more days is a long wait.
Give me latitude with the aforementioned chocolate chips.
Give me latitude because sometimes I'm angry I don't have answers.
Give me latitude becuase I don't understand how people who don't want perfectly healthy beautiful babies receive them anyways.
It's the ebb and flow of gratitude and latitude that that gets us through everyday. Always be greatful but don't be ashamed to admit the latitude.
Friday, July 31, 2009
Monday, July 27, 2009
I freely admit last week was not a good week in the Think Strong, Be Strong, Stay Strong Department.
I've tried all this time. I do the best I can. Really I do.
But we all have those days. We all have those moments where there's more "I can't" than "I can." More "Why me?" than "Why not me?"
When Saturday rolled around, I was pretty upset at life. Upset with the news for telling me about some dirtbag that left his baby in the car so he could drink at the bar, upset with God for making me wonder if my baby was ever going to be okay.
Needless to say, getting to church on time Saturday night was a drag my feet, teary eyed affair. I knew I had to go, I knew I needed to go; that wasn't the issue. The issue was it took all my strength to believe and I just didn't know what I had left to believe in.
Finally at 7:34 when I realized church starts at 8pm which translates to 7:54pm sharp I made myself get in the truck. After all, if you're caught walking up behind the priest at 7:53pm the charming elderly ladies pass you a glance that's quite frankly not so charming.
I've always, always been a spiritual and religious person. Looking around to see whose baby is crying during the First Reading or catching up on the bulletin during the homily has no implication on my belief in Angels, a Stronger Power watching us from above, Jesus' love and miracles.
I'll be the first to tell you, Saturday night I had to put the bulletin down and listen.
Our fun loving, happy go-lucky priest, who looks like a little like a chimpunk and intones his voice everytime he's passionate about an issue, had something to say that hit me like a baseball to the forehead.
I've always admired this priest's ability to be real-life. I admire him even more now that it was my real life he hit upon.
The point of his sermon Saturday night was this:
"If you ask a great a majority of religious people if miracles happen, they'll say yes in a heartbeat. If you ask a majority of religious people if miracles happen to them, you'll receive a stammer followed by a blank stare. All religious people believe in the power of prayer, until they think they're prayers go unanswered. All religious people believe in the signs God sends us, until they themselves don't see a sign. The thing is, God answers all prayers, God sends everyone a sign and more importantly God is an equal opportunity miracle provider. You just have to be open and honest with yourself. You have to be direct with what you're praying for. You have to pick the sign or you'll be wandering around forever trying to find one. Only when you're honest and straightforward with prayer will you see the miracles God has given you."
The rush of peace that comes over you when someone truly understands is amazing.
That sense of calm relief was sign number one, right there. Point blank obvious.
I was still thinking about church 20 minutes later when we got home.
I had seen my first sign of this whole ordeal. Where were my other ones? Well, there's a carseat and a crib in my disaster of a baby room. Little Angel started on his 9:30pm party in my belly right on schedule. Then there was the day at a family funeral when I asked God to give me some guidance and send me a healthy child. I looked up to find a baby I hadn't noticed at the start of the service playing in her father's arms. When I turned again for one last glance, she was gone.
So I think I have the signs covered pretty well. What about the prayer though? Believe you me, I'm pretty direct with the prayers these days. After all, If I have to ask God for a great deal, I better keep it short and simple.
This is my prayer. This is the thought running through my head 100xs an hour.
"Dear God. Take good care of everyone who means the most to me. Give David and I the strength to get through this. Please protect and watch over my baby. I can handle any physical issues you may give my child, but please let Little Angel's brain function and allow her to lead a normal quality of life. If you are unable to do this for my child, please provide the Angel Wings Baby so truly deserves."
We'll see what happens.
Here's to hoping the words of a kind priest, a couple signs and a solid direct prayer lead to a miracle come October.
Monday, July 20, 2009
In these never ending days of working hard and working hard to stay distracted I was browsing through one of my favorite magazines.
As I was flipping through the magazine looking for anything to think about I came across an article entitled "When did you realize you reached adulthood?" Attached to the article were smiling beautiful faces who because they made their first car payment, could get themselves up for work on time and didn't need parental approval for the "Dude of the Week" had reached adulthood.
Then there was the chick who said, "I can get a tattoo wherever I want."
(Hey, I never once said I was reading anything overly philosophical. )
While this article should've made me smile and put me fast asleep, instead it kept me up thinking, (like most things do these days) about when I truly reached adulthood.
With the exception of crazy tattoo lady, I've hit most of those milestones; been through those rights of passages. While I was ecstatic at the time I didn't think I was accomplishing some great feat deserving of a sticker on my Life Chart. Instead I was just merely taking the next step in life, doing what responsible people do.
Ask me when I became an adult? Go ahead, I'm not shy. C'mon....I'm waiting.....
Ok. I'll tell you. June 7th 2009. 9:32am.
That's right. I can pinpoint my entry into adulthood down to the day and time. I can also tell you what I was wearing as soon as my pregnancy brain clears if you really want me to. David could probably tell you what the weather was and what he should've been home doing.
I consider my entry into adulthood the day doctors told me my baby had unexplained complications and "they" couldn't tell me anything other than go home and wait for October. Doctors with years of medical expertise and $200,000 eight year Ivy League educations couldn't and wouldn't tell me anything more than "plan for the worst, hope for the best."
Back the train to Adulthood up here. Wait? What do you mean wait? Waiting is for children. Afterall, how many times do parents tell their little ones, "sit down and wait." "Just wait until you're an adult and realize how much things cost. "Just wait until you have children of your own." On and on. We were all children once, you know the drill. We were waiting for Santa Claus, our friends to come over, the rain to clear, mom to catch us in the mud puddles, birthday parties and well... how fun adulthood would be.
No one ever said that a $1000 doctor bill would only tell you to go home and wait. Hell, for $2.99 a minute Sylvia Brown and her tarrot cards could've told me that.
Turns out adulthood is about waiting as well. The difference between childhood and adulthood is how you handle the waiting. People look at whining grown-ups weird after all. Adulthood is realizing while you can't fix everything you can cope. Adulthood is knowing you can't conquer fear of the unknown until you get heaven, but you can do your best in the meantime.
I became an adult when I learned worry will kill you if you don't get out of bed and get to work. I became and adult when I realized you can laugh, cry, worry and smile at the same time.
Being and adult meant I could feel the way I feel without a guilty conscience. I became a grown-up when decisions regarding my baby were solely mine and David's and anyone else's judgement calls were the least of my concerns.
I entered adulthood when I discovered hope and intutition are the most powerful forces we have. Then there was the day I realized it was perfectly okay to be upset with God and at the same time pray a never ending stream of Glory Be's until I fell asleep.
Then there's the fact being an adult means I can eat zuchinni pancakes three days in a row and wash it down with mint ice cream if that's what gets me through today.
I can spend 20 minutes in the shower recovering from the world, feeling baby kicks, taking it as a sign things are more fine than I thought, without leaving my siblings a cold shower.
Being 27 and truly grown-up means admitting I want to skip prenatal classes not because of the time committment but rather other pregnant women and their joyous pregnancies make me feel robbed.
I became an adult the day I learned to plan for an uncertain future. I couldn't resist the clearance rack at Children's Place, put the crib together, found a diaper bag I loved and worked on paint colors for a room I'm not sure I'll ever get to use. I became a true blood grown-up the day I learned the meaning of "bittersweet."
I've entered adulthood in the last month, whether I wanted to or not.
So in response to the original magazine question, I'd have to say, "The day I realized life is complex; not something of which sense can be made. It's when I finally understood it's how you handle the complexity and waiting that makes you an adult. It's the freedom I felt the day I finally admitted some battles weren't meant to be fought, muchless alone."
By the way, gray track pants, red long sleeved t-shirt, green flip flops. 79 degrees. Should've been home cutting hay.
Monday, July 13, 2009
We're always planning for the future. Every action has a reaction. Every action affects what we'll become, who we are, what we do down the line.
When you're five years old, cheek pinching Aunt Alice never asks what you're playing with in the sandbox. Instead she says, "What do you want to be when you grow up?" Your answer is usually along the lines of astronaut, Cinderella, or whatever it is your parents do.
When you're in high school you plan for how you'll see your sweetheart of the month come college. You plan what you'll tell your parents when you discover Boone's Farm at the bonfire. You research prom dresses in October and study hard for ACTs so you can attend your dream college.
In college you discover new dreams and talents. You take a C- in Intro to Chem and realize that maybe Rocket Science wasn't for you. Turns out there is no majoring in Princess. Ok. New direction. New plan. Life is now heading towards a stable and steady field like business or education. Not exactly what you wanted at first, but you worked for it. No matter where you landed it was meant to be all along.
Then you get your first real job and a cool apartment. You want to marry Kenny Chesney. You dream of Being Teacher of the Year or whatever is top in your chosen field. Then you marry a dairy farmer who your friends say looks like the great KC if he's in a hat, you stand on your head and shut one eye. Your job is now working sub pay at the local public school.
However, life is good. Not the future you planned per say. Not the dreams you had at five years old, but a good happy life all along. You are grateful. You can't ask for anything more.
I think with our Little Angel I spent the last month living in the moment; not exactly planning for the future. There's nothing wrong with living in the moment, however, but there comes a time when the future, no matter how scary must become reality.
And so it goes. Back to planning. Something I was too scared to do this past month. This coming from the girl who buys clearance rack wrapping paper on January 3rd because Christmas will be here again before you know it.
While this isn't exactly the future I planned for, not exactly the future I saw coming, it's our future nonetheless. Little Angel will be here before I know it and her parents need to stay strong and do the best for her no mater the outcome.
I've been living in one moment for too long. I've been suspended in worry and doctors appointments. What about the future for Little Angel? It's coming and just because I don't want to move forward, doesn't mean it's not coming full speed ahead.
Yesterday, David and I put the crib together. We need the call the carpenter to finish the basement bedrooms so Little Angel has a room of her own. I didn't think twice when my two best friends talked me into a "Miracle" onesie with angel wings on the back.
This week expect me to paint the baby room while it's still cool. The carseat is coming out of the box. I'll keep playing with the stroller until it opens with one hand. We'll be signing up for childbirth classes, something I was afraid to do last week when everyone else's baby futures seemed so perfect. I'll be researching the best cloth diapers, the easiest bottles and the cheapest high calorie formula on my next rainy day.
I need to plan. I need to look forward to the future. Little Angel is still our baby. Little Angel is still arriving and there's no reason David and I can't enjoy making plans for the future.
Perfectly, Imperfect. Not what was planned or imagined all along but still meant to be.
Monday, July 6, 2009
It's the truth. It's my daily reality. It's the source of all my hope. It's the source of all my worry.
No one knows.
No one can tell me a single thing about Baby's chances.
I know. I know. It shouldn't matter. I will love Little Angel no matter what. At the very least, Little Angel will grace our presence and leave us with a legacy in which we have become stronger.
I know I can fight any battle presented before us.
It's what I don't know.
That's my truth. That's my daily reality. It's the thoughts slipping in the back of my mind. It's the what ifs. It's the variables.
It's the what ifs keeping me awake at night. It's the what ifs making life hard.
It's what I don't know that worries me.
I've always been a planner. A Queen of Organizing if you will. A girl on a mission. A place for everything. Always wanting to know what's going on next. Trying to plan for whatever next is.
When we first found out Little Angel probably wouldn't make it, it was hard. However, I could come to terms with that scenario. Have a baby, send a baby to heaven, grieve, move on, always remember there's someone watching over us from Above. Not a simple process at all, but one I understand. One I can get through.
Now however, we find out Baby has a chance at life. I should be elated about this. I should be estactic about this. Should. The operative word in the sentence.
Don't get me wrong. I am overjoyed. I am excited. I am hopeful things aren't as bad as they seem. I pray a string of Hail Mary's every day hoping for a baby with proper brain and internal organ development. A happy Baby who will grow and thrive.
Then comes the worry in the back of my mind. I know I should not think the worst. After all, plan for the worst, hope for the best. Again, SHOULD.
The should part is hard. The should hurts my heart. The should jumbles my thinking. It raises so many questions, so many concerns.
How long will Baby survive?
What issues will Baby have?
What treatments are available for Baby to thrive?
What if Baby does have strong impairments inhibiting a normal life?
If Baby survives, would Little Angel have been better off an Angel of Heaven instead of an Angel of Earth?
What I can't plan. What I can't fix. What doctors can't tell me. What keeps me awake at night. What brings me to tears alone in the car. What the Queen of Organizing can't fix. Then what? Something I guess I shouldn't know right now.
Sometimes the surprise is in what we don't know. The surprise is in what we can't control. The surprise is in hoping for the best and finding out it was meant to be all along. The surprise at the very least is always in hope.
Friday, July 3, 2009
These days are a recipe of mixed emotions. I can spend 2 hours as happy as can be. I can spend 3 hours as a normal functioning adult. Then there's the 10 minutes of every hour that unending worry kicks in. There's the 20 minutes of every night I pray like I never prayed before. Sometimes the stress of mixing that all together begins to bake with tears and a feeling of hopelessness.
However, there are things I hang onto that get this recipe out of the oven and on to the dinner table. These are things on which I rely.
1) A family who would do anything for me.
2) Girls' Weekends 2 weeks in a row.
3) Good dessert a sister-in-law sent over.
4) A husband with a never ending hope who truly believes things aren't as bad as they seem. A husband who tells me to fight for my instinct, because in the five years he's known me, I've made 3/4s of my decisions on instant instinct and it hasn't failed me yet.
5) Reba's "Strange." I swear when I'm a little bit sad, that song hits the radio. It is amazing no matter how tough life is, you still get out of bed, you stop crying and the sun comes out.
6) Trace Adkins "All I ask." Story of our life.
7) Hope, Hope and more Hope.
8) An ultrasound picture with smiling baby.
9) Getting kicked by Little Angel everytime I google things like "incorrect amnio results" "misdiagnosis" or when I talk about Little Angel like he's going to be fine. I'm taking that as a sign maybe, just maybe things are fine.
10) Every day I make it without an issue or a complication with Baby. At first it was just plain upsetting because I want the whole thing to be over and a baby in heaven. Then I realized everyday that passes is one more day for Baby to grow big, strong and relatively healthy.
11) An innate belief that God wouldn't let me bring a crib home and buy a clearance rack carseat if Little Angel wasn't meant to be here.
12) The results of mine and David's blood karyotyping. We're both chromosomally fine. We now have no explanation for our weirdness, but from a scientific standpoint, we're perfect as can be. This means we can someday have more healthy, beautiful children. Little Angel is truly a one time act of God. A one time act of God meant to be.
13) Prayer, Prayer and more Prayer.
110 days of survival left. 110 days until I see Little Angel. 110 days until Little Angel graces our life in ways we have yet to understand.
Wednesday, July 1, 2009
We are glad you are going to spend a lifetime with us.
As your parents we will help you across any bridges you may face. We'll help you be strong and give you the courage to overcome any obstacles.
We will give you the best life we can.
Your Mom and Dad promise. It's the least we can do.
However, we have to ask. We need to know.
If you weren't growing Angel Wings in there, what exactly where you doing then? Please explain.
We weren't expecting you to give us this kind of scare until you were at least 16.
That said, whatever the explanation we still love you. Just don't do it again.
Mom and Dad.
PS. You're grounded until you're 18. Just so you know.
All I have to say today is that I am grateful. I am beyond thrilled. I am excited for what the future may hold. I don't have thanks enough for the prayers and good thoughts people have sent this way. I never truly understood faith and its power until this moment.
It wasn't always that way. In fact I was about in tears at the amusement park on Saturday when I started comparing the rollercoaster to the emotional rollercoaster David and I have been on. Emotional Rollercoasters are hard. They're thrilling, they're exhausting. You know when the ride starts, but you don't know when it will end. You have no idea how much peaceful track there is. No idea how many dips. No idea how scary the uphill climb is or how exhilariting the downhill swing is.
Today we are on the downhill swing. Thanks to the miracle of prayer and a compassionate genetic specialist we now refer to as Dr. Miracle we are going to be okay.
Little Angel still has a clubbed foot, a cupped hand and a spot on his heart. However, the doctor sent to us yesterday said these things are in no way indicative of the Orders to Heaven we received last week.
He said the limb problems can be corrected. Baby's heart spot is getting smaller. Surgery may be required after birth or it could go away. The chances of either are about equal but not any greater than other healthy babies.
Little Angel's head has also taken on a more normal shape compared to the Lemon-head mental impairment diagnosis we first received. When I quizzed Mr. Miracle about the risk of mental impairment he said he can't diagnose that, but he can't for any baby no matter how healthy. Dr. did say that he didn't see spots on the brain, fluid around the brain, abnormal head size or anything else usually indicating impairment. The only way we will know is when Baby starts missing milestones after birth. Mr. Miracle did say it wasn't anything we should be overly concerned about because other than the Trisomy 14 issue, the amnio didn't show any other diseases related to mental impairment.
Furthermore, the doctor told us that if we wouldn't have been forced into an amnio we would have thought Little Angel's issues to be purely physical, no one would be the wiser and we'd have all been better off.
This is a good place on the roller coaster. That part where you're about to slide down the slope and laugh uncontrollably because you don't know what else to do when that sense of relief and excitment hits you.
However, we have one last slope to climb on the coaster. Mr. Miracle tells us he is concerned about baby's physical growth after birth. He much prefers I deliver this baby at Children's Hospital so a feeding tube can be inserted if necessary and any issues related to Failure to Thrive can be corrected quickly. We will have an u/s every month now to determine how fast baby is growing and what course of action we need to take so baby can thrive in this great big world.
This is a slope we can climb. This is a slope we can handle. We never thought our rollercoaster ride would turn out as it did, but it did.
We'll keep praying and keep hoping until the end of the ride. Thanks to everyone who has joined this rollercoaster ride with us. We appreciate all of you.
I don't love the ride I'm on, but I'll love the end of the ride indefinitely.
Monday, June 29, 2009
What if I told you I have a confession? What if I said I had a secret? What if I came clean and told you there was a little voice in my head telling me to fight harder? What if the little voice in my head kept saying "Ask the questions, push harder, something isn't quite right in the doctor's speel."
Would you call me crazy? Would you think I was in denial?
What if I told you I think it's motherly instinct and it's fighting mad?
Afterall, I've been to the other side of crazy. That was last week.
It's not denial. I've found the peace I need. I've accepted a baby going to heaven.
What I can't accept is what may happen here on earth. That's where my motherly instinct kicks in. Where my motherly instinct fights harder. Where my instinct tells me it's not the end, because the end isn't going to be bad as it seems.
This all came about because I have two days of doctor's appointments ahead of me.
The first appointment was over and done with as of this morning. This is where we find out because I'm perfectly healthy and measuring right on track I will probably carry this baby close to full term.
This was where we find out the genetic counselor and specialist doctors have no idea what other cells the Mosaic part of Trisomy 14 has attached itself to. Meaning? Doctors have no idea how severe this is going to be, but they've been preparing us for the worst case scenario.
The blood karoytyping should also be back tommorrow that was done on David and I. If our chromosomes come back clear, chances are great this was just an act of God calling for Baby Angels. If one of our chromosomes comes back abnormal, it means we have a 66% chance of never having perfectly healthy babies of our own.
So this is where my instinct kicks in. This is where I get fighting mad. This is where I drill doctors with question after question. This is where I ask doctors to stop worrying about their career breakthroughs and be real. This is where I ask doctors to stop playing God.
They did the best they could for us today. Tomorrow after an ultrasound we should have more answers.
So what exactly is my instinct telling me?
If either David or I is walking around with the same abnormal cell structure, what's not to say my baby won't be a walking, talking, beautiful, thriving child as well? After all, we've lived this long. It may explain some weirdness, but we're here and doing the best we can.
If doctors don't know what cells the Trisomy 14 has attached to, what's not to say that it's merely the cells that control physical aspects and anything that would inhibit life are unaffected. After all, baby has made it this far.
More importantly, why do I have a strong desire to paint the baby room and screw the crib together yet? Why did I buy a carseat before all this happened? Why on a shopping trip through Target did I feel compelled to buy the spoons and storybooks on the clearance rack? Is it because this baby is coming home with me? Sometimes I have a hard time believing God would torture me like that otherwise.
Why do my most inner thoughts tell me the end may not come until October, because it's a better outcome than I could've ever hoped for? The only outcome better than sending a Baby Angel to heaven.
How come everytime I start to think sad thoughts about the future of our Little Angel, I get a hard kick in the ribs? Is Baby telling me that she's okay in there? I like to think so.
Call me crazy. I understand.
For today though I much prefer to call it motherly instinct. And today it's still fighting country strong.
When God and doctors who play God meet.
There's science. There's religion. Two different theories; two different thought processes on opposite ends of the philosophical spectrum.
Believe one. Believe the other. Never the two shall cross. Too many contradictions, too many moral dilemmas otherwise.
Then there's real life. While we're at it, let's throw in two specialist doctors and a genetic counselor. Each with their own thought process as well. Each trying to outdo the other. Each essentially thinking my precious baby is a science experiment.
Let's not forget the most important part. A Baby growing Angel wings. The center of everything. A tiny one pound being who has taught his parents that science and religion do cross paths in real life. A sweet little Angel that has doctors scrutinizing every little detail searching for a break through. An Angel God has spoken to. An Angel whom God entrusted his parents to make some serious decisions for.
Decisions where religion and science cross. Real life choices.
We found out today that the doctors don't really know what to expect when our Little Angel is born. What they told us last week was considered "normal" and worst case scenario. Since I'm perfectly healthy chances are good that I will deliver this baby full term, or after the 8 month mark. Baby could be stillborn, baby could die shortly after birth, baby could live a month. The doctor told us today that we have to make to make quality of life decisions upon delivery of Little Angel.
If it is born not breathing do we want a ventilator to keep baby alive until further examination can be done/baby can breathe on her own?
If she has severe brain impairment what effort do we want to make keep this baby alive?
Do we only want comfort care upon delivery of this child, so our little Angel passes into heaven naturally?
Do we want to deliver this baby in a hospital with the latest and greatest equipment in case we can save baby? Or was this baby meant to be heaven bound all along and it should be born in the home town hospital surrounded by the people who love it the most?
Decisions. Decisions. Decisions I would never wish on my worst enemy.
Where David and I stand on this we can't say for sure. We need more prayer time. We need a few more doctors visits and ultrasounds to determine the truth.
We need more time to figure out the contradiction between science and religion.
We both know however that a struggle for life on earth is no match for earning a place in heaven.
Friday, June 26, 2009
I've always been the argumentative type when it comes to things I'm passionate about. If I didn't think law school was out of my league I would've been there. I would've been one fiesty DA. Instead I settled for teaching HS school government and helping classes of wandering teenagers to find their passion. I was paid to play Devil's Advocate and it was an amazing experience.
Needless to say, I spent the last week plea bargaining with God. Wednesday I argued and argued with Him asking He at least reduce the charges to "finding peace." It's the least he could do for taking my Baby. His response was long in coming. I swore God was off in the Courthouse in the Sky fighting bigger battles.
Turns out, the lawyer in me caught His attention. He was listening. I woke up Thursday without a tear in my eye. I woke up Thursday not wishing it was October. I did the laundry, cleaned my house. I mowed the lawn and thought all that thinking time was going to get to me. I didn't run out of the barn crying. I made dinner that didn't come from a box. David's silly jokes made me laugh. I was happy for today.
As I laid down to go to sleep I thought. "Maybe it's just a fluke." Maybe I'm out of tears and time and tomorrow all hope will be lost again. Then it hit me. Baby Angels aren't given wings to make his parents miserable. Baby Angels are called home to watch over, protect and bring peace to parents. Baby Angels are the hope for the future. It's a theory bigger and stronger than me. But it brings me peace.
Call me crazy, but I'm also of the school that believes babies feel what mothers go through. Maybe Baby was tired of being sad and worried. Afterall, Baby has a wonderous life in heaven. I should celebrate that. I need to celebrate. Also I'm sure Baby wants to spend his last weeks with me happy. So that's what I'm going to do. Be happy for the time we have left. Not miss out on the life I currently have. It makes Baby happy. It brings me peace.
So I woke up this Friday morning. Again without a tear in my eye. The sunrise didn't make me want to pull every shade in the house. My coffee didn't taste like battery acid for the first time in a week. My favorite cow was back to being my favorite cow, not just a huge, slow pain in my side. The flowers in my garden no longer looked liked a sad reminder. I laughed with my mother in law just like always. For the first time I believed that Baby Angel is getting wings because God has a grander plan for us.
Today I'm going to celebrate finding peace. It's also the weekend of an annual family vacation. I'm excited to spend this time with family. I'm going to play in a waterpark. I'm going to be silly with other people's kids. I'm going to wear my cute clothes and love my baby belly for the time being. Baby Angel needs this. So does his parents.
Not to say I wouldn't love to file an appeal against God, but I'm not pushing my luck.
After all. I have found Peace. I have found Contentment. There's nothing more to ask for. Case closed.
Thursday, June 25, 2009
Last night on the news Fox 9 was investigating (I know I know..the newscast with the least amount of real news) in which ear you need to speak if you want people to truly listen to you.
The answer is the right ear.
So please turn your right ear to me for a second.
God if you are listening: I know you're doing what's best for David and I at the moment. But if you could help us find some peace in the meantime we would appreciate it. I will be indebted to you forever if you could send us down a reasoning as to why you're doing this to us. Please watch over us and protect us. Also, if you must call our baby for you own, please take good care of the little one. I hear Baby Angel wings are fragile.
Baby if you are listening: Your Mom and Dad love you very very much. We wish you the best in heaven and hope you take good care of everyone up there. Please watch over us and protect us all here on earth. There are many people who love you and wish you the best no matter what. We love every little baby kick and spending the short time we have with you. Love you forever.
Friends, Family and Supporters if you are listening: We appreciate your love and support. Many of you have asked what you can do for us. The honest truth is, I don't know. I don't know how to help myself sometimes. All I ask is you hug the children dearest to you and never let go. Tell them you love them and pretty soon there will be a Baby Angel to watch over them.
Everyone has a story waiting to be told. Always be willing to lend your right ear.
Wednesday, June 24, 2009
The support of friends, family and well wishers.
Cupcakes with sprinkles.
Purple wildflowers from a friend.
A Serenity bracelet.
A decade of Hail Mary's we say each morning.
Hope in the faces of other people's smiling babies.
We thank and appreciate every one of you and everything you have done for us.
We love you.
I've always been a strong girl. I can throw hay, drive a tractor and milk a cow with the best of them. I can keep a class of rowdy high school boys in line, no problem. In college I gave a guy a black eye at the bar because he wouldn't leave my friend alone. I don't need a guy to move my couch when it's time to vacuum. I love an afternoon date with the weed whip. I never understood girls who tell me mowing the lawn is too hard. I let half the things that people say roll off my back. Life is too short to be crabby, after all.
Around here we call that Country Strong. Being the farmer's daughter and the farmer's wife I know all about Country Strong. Where I come from there's two options; Either do it or ____?
I've been too busy doing to figure out the ___ part. No one else is going to do it for me. If I don't do it we all suffer. So I might as well do.
Same thing applies with our baby situation. I have to keep doing because there is no ___ part. What else can I do? Life is still going to tick by one day at a time.
That's not to say that I'm perfectly okay and have accepted everything that comes my way. I've fully accepted that my baby has a home in heaven. It's a miraculous thing being the Mom of an Angel. I can't accept that God won't tell me when it's going to happen. I struggle with the situation in general and scream "It's not fair" about six times a day. I don't understand at all why God did this to us, what His intent is.
I function throughout the day. Anyone that barely knows me thinks I'm fine on the outside. Anyone that truly knows me sees me run crying out of the barn. My friends know that I'm not in the mood for a lot of chit chat these days. David knows that while I'm doing my best, the things that were once so important to me, seem trivial. David knows that I struggle waking up in the morning knowing I won't wake up and find October and the whole thing over with.
I still get out of bed. I still dry my tears. I still put my all into the things that matter. What choice do I have? Again do it or ___?
No one ever said being the Mom of an Angel was going to be easy. But I am Country Strong and I will do the best I can. There is an end in sight.
People describe us as "courageous, brave, strong, inspirational." I don't know about that. We're just too busy helping an Angel grow wings to figure out the ___ part.
PS. Baby Angel...save your Mom a place in heaven. She's a bit of a rebel. She needs all the pull she can get. ;)
Tuesday, June 23, 2009
Rain and I go way back. I was born in the rainiest spring on record. I was born in a downpour and it rained everyday for 2 weeks after that. My farmer Father was entirely beside himself. The bonding time we had however, formed a special connection we have to this day.
Rain and I have always been best buddies. For 27 years it’s rained on my birthday. Without fail. Sometimes just a sprinkle, sometimes a downpour but always without fail.
My HS graduation party was a 30 degree pouring rain event. My college graduation was a rainy night. My uncles took bets on rain on my wedding day.
This May was the 3rd driest on record. June comes and we find out that our Little Angel is making the way to heaven. Along with it comes a rainy June. While I’ve come to accept the facts, I still have my down days and an empty sense of longing I can’t fill.
And then comes rain. Just like clockwork. Just like always.
It’s my shot at hope that maybe God is really working miracles up there. What that miracle is I can’t say for sure, but God knows and that’s what matters.
So rain, rain, rain. Bring on the rain. I won’t mind.
It’s my last shot at hope.
I love sandboxes, color crayons, a good story book and swingsets. Rocking babies is what I do best.
David loves pushing tractors across the floor, blocks, showing toddlers the farm and having staring contests with babies.
We both love waterparks, silly Disney movies and four wheelers.
There's popsicles in our freezer at all times.
Needless to say, we're kid people. Always have been, always will be.
I used to be the most in demand babysitter in my hometown. Parents loved me, kids loved me. My standing date in high school was Saturday night with a 3 year old, 2 year old and a baby. Life was good. To this day, bring me anyone's kids and I'm all for it. I'll never say no.
David is the Uncle that everyone wants to play with. He knows how to keep kids entertained and has an imagination as big as the sky. He also lets kids do things their Mothers wouldn't let them. He's the Uncle everyone said they'd get even with when he had kids of his own.
I'm the Aunt with the fun toys, cute craft projects. I'm the Aunt that lets kids crack eggs in the cookies when their own Mom doesn't. I'm also the Aunt that keeps Uncle David in line, making sure big kids and small kids alike behave (it's the teacher in me).
We both knew when we got married that we wanted a half a house full of kids. 3 maybe 4. Cute little blonde haired, blue eyed babies that would fill our lives with joy and wonderment. Kids. The reason we could now be kids ourselves and not look stupid doing it. Whatever God had in store for us was fine.
We didn't know this was what God had in store for us.
We've waited a lifetime for this.
Now we're waiting a lifetime for it to be over.
It's amazing how 4 months and 27 years can both take a lifetime to pass.
Monday, June 22, 2009
Just like any happy expecting couple David and I spent the previous 22 weeks discussing baby names. We came up with a short list of names we loved. Autumn, Amy, Ryan, Nathan. Simple people. Simple names.
When you discover your little Angel is heaven bound, you quickly realize that there's no worthy name for a baby about to begin the fight of his short life. There's no earthly name strong enough or good enough for a baby earning angel wings in heaven.
In the barn last night (milking cows is what we do best after all), David and I were talking about what kind of name our Little Angel needs.
For a girl we've both always loved Hope but took it off the list because it seemed trite. Well let me tell you Hope is no longer trite when it's all you have to hang on to.
So Hope for a girl it is.
After thinking quietly about boy names for a while David says to me, "What about Gabriel like the Angel Gabriel in the Bible?" Beautiful. Perfect. Also the name of the biggest jerk in high school. Damn reality always getting in the way of something so perfect. :)
We're still considering Gabe. There was also an angel named David. We're pondering. I'll keep you filled in. If you have any suggestions for us, we're more than welcome to them.
Today is a new day. It doesn't make anything easier, but it's still a new day. Little Angel Mom and Dad are hoping for the best for you. Whatever the best may be.
The fine line between waiting on a baby to go to heaven and the reality of life that is sometimes hell. We love every minute of being with our little one, cry every minute of being with our little one. It's a hard thing to comprehend. Nonetheless, this is our story.
We found out we were expecting in February of 2009. All was really well. No morning sickness, no problems. David even commented that I was "good at being pregnant." We were busy guessing the sex, and arguing one way or the other about it. To this day we still don't know the sex and much prefer to keep it that way.
At our ultrasound on June 1st, the doctor found some problems with baby. Baby had an echogenic foci on his heart (Calcium deposit), and a clubbed foot. None of these issues are a big deal in and of themselves. I was also born with a clubbed foot, so we somewhat planned on that happening.
We were then sent to a perinatal specialist for a followup Level II Ultrasound. There the perinatal specialist told us that Baby had the previous conditions plus a lemon shaped head, and a cupped hand. As a result our chances of birth defects for our age were greatly increased. After the doctors rattling off every disease known to man and David and I shedding lots of tears, we decided to do the amnio.
The FISH (fast) results of the amnio came back clear as can be. We were both convinced that all was well. If it's internal organs and brain were functioning properly, everything else was completely minor.
Fast forward 2 weeks. The genetic counselor that we originally spoke to told us that the long term amnio came back saying that Baby had a major chromosomal defect. The 14th chromosome was growing into the 13 and there were 3 14 chromosomes instead of 2. The doctors told us that they don't really know what this means as there's only 21 cases of such things in the world. All but six of these babies have died. Babies that suffer from such a sad thing either a) are delivered stillborn preterm b) die shortly after birth or within a couple months. There have been no babies born with this issue that have lived without extreme medical intervention.
We had two options 1) Terminate the pregnancy 2) Wait for God to intervene. Even though it goes against everything we believe in, we seriously considered termination. Judge us if you want, I understand. We judged ourselves too. However, we felt trapped. When your two options are essentially "killing" your baby or a carrying a baby that won't make it, no choice is the right choice, best choice or wrong choice. We just felt that termination would give us some closure and a chance to move on. However after an ultrasound determined that medical termination wasn't an option due to baby being too big, we figured it was a sign that we were meant to carry this baby.
This is where we stand. We're hoping for the best and preparing for the worst. We know that God takes care of these babies. We've accepted the fact that God wants baby angels in heaven. We're okay with that. We just wish that God would call his angel home now, sooner than later rather than October. We need the closure, we need to heal.
It's a hard place to stand. But we have to stand strong. We have to get through this. We will get through this.
We thank our friends, family and well wishers daily for the support.