A Complete Family (?)

So just when I think my psyche is calming down, that the waters are beginning
the descent from killer swells to a low tide, someone says something.  That little
side remark, not directed at or towards me in any way.  But someone says something,
and it just hits home.  It hits right where it hurts.

That's when the panic sets in, that's when I get that tight feeling in my chest,
that bubble in the pit of my stomach. And the bubble turns into a knot, and that
tight feeling in my chest becomes a pinch.  Then the pinch turns into a brick. And
then I'm sitting here, stuck in my head, which feels like it's spinning out of
control all poltergeist-style and I don't even know how to react.  So I just sit
here, stuck inside my head.  Not even trying to get out, just, dwelling on it.

"Do you feel like our family is complete?"

Reading an old blog, from a new blogger (new to me).  His wife asks him this
question.  If he feels like their family is complete, with just one child.  And it
hurts.  I have Ladybug.  And I have Mark. And in a sense, Mark has Ladybug.  I
don't have a "step child".  I don't have a point of reference for how he may feel
about the concept that she may very well be the closest thing to "his" that he may
ever have.  I don't think that I would be able to say "Yes, a step-child is enough.
I'm okay with not ever having my OWN child."

So now we're faced with the possibility that we can't have kids.  Not because he
can't have kids, or because I can't have kids, but because we could basically be
genetically incompatible.  That any child we try to bring into this world will
be plagued with Spinal Muscular Atrophy.  That, even if it doesn't occur in the
womb, that at any point during this child's life, he/she could have this
dibilitating disease that will ruin his/her life at some point, and eventually
kill him/her.  This is a terminal illness.  There is no cure.  There is no slowing
it down.

This means, he could have children.  But he may not be able to have children with
me.  And this hurts me.  And I can't imagine that this doesn't hurt him.  I cannot
fathom that he is actually okay with this!  I know he wants children, we wanted a
child (despite how unprepared we actually were for it) whenever we got pregnant
with Butterfly.  And we wanted a child while we were pregnant with Butterfly.  And
every morning I wake up knowing that we should have a child now.  A 6 month old
infant should be sleeping in a nursery just outside of our bedroom door.  An infant
who would be chubby cheeked with a full head of dark hair and those bright blue
eyes, just like her daddy.  She would be turning over and learning to sit up by
herself.  She would coo and ahh at us while we played on the floor during tummy
time.  And I go to sleep praying to God that we have that opportunity again.  But
I know that sometimes things don't always work out the way you want them too, and
that Mark and I may never get the chance to have our own precious little baby to
ooh and aah over.

I've had that before, and I will cherish those memories for as long as I am able
to.  And I know that even before I got pregnant with Ladybug, I longed for that.
And Mark - my God, if ever there were a man to be an amazing father it would be
him.  He was made for it.  He's calm and level-headed and gentle and incredibly,
amazingly loving and passionate and just so wonderful.  He deserves the chance
to be a dad.  And yes, he is Aleigh's step-dad (for all intents and purposes), and
he does not take that job lightly.  He treats my daughter the way he would if she
were his child, and this lifts my heart and warms my soul, really.  But I'm so
sad, for me and for him.  Together, and individually.  He deserved a child.  I'm
scared that one day, he will realize, no, no our family is not complete.  Our
family cannot be complete, because we can't have a child together.  Because he
can't share his genetics with a little bubbly bundle of happiness with me.  Or
simply because he can't enjoy that peaceful quiet warm time when babies are all
smiles and giggles and hugs, when it's finger-holding and diaper changing.  He
missed all of that with Ladybug.  She was already so smart and talkative and
independant.  She was nearly 3 when Mark and I got together.  Little, yes.  But
not a baby, not a helpless infant.  And that's such a magical amazing wonderful
time...

I want another baby.  I have got baby fever like nobody's business, and it is
a physical pain when I think too much about it.  And then I think, toss caution to
the wind and try again, but then I realize how selfish and stupid it is to think
that way.  But damnit, I want a baby!!! And I have a baby, and she is and always
will be enough, but it's human nature to want.  If I didn't have Ladybug as my own
little genetic mini-me, I would be stir-crazy at the idea of "No- Sheila- You will
never have a child of your own."  Maybe Mark is just that much better of a person
than me.  Maybe he really can handle it.  Maybe there are options, and maybe one
day we will be blessed with some fantastic opportunity to raise up a child of our
own.  It's just hard to be optimistic about this, with everything that has
happened recently.  With everything we have been through.

And that's why I'm stuck in my head.  Wanting to ask him, but not knowing if I'm
going to want the answer, or if one day the answer will change when he's older and
realizes that he's changed.

"Do you feel like our family is complete?"
"Is this good enough?"

The Christmas Card Calamity

I have never been a giver of Christmas cards.  I didn't have those "acquaintences" that weren't close enough to require a gift but not scarce enough to warrant nothing.  Well this year there are a few people, my mom's soon-to-be-in-laws, friends of either mom's or dad's, my previous employer, Mark's boss and his wife, the preacher and his wife who handled Mikaela's service, these are all people that I wanted to send a little card to to say, hey, Merry Christmas, thinking of you.  Sweet and simple, right?

Fuck no.

See, I didn't really think this through when I started writing out the cards.

"From our family to yours-"

Simple.  Pleasant.  Heart-warming.  I like it.  I use it as a greeting, in every card.  It has a nice ring to it.  Then a sweet little hello and what-ya-know thing inside, hand-written of course.  Simple.  Pleasant.

Then I get to the signing of the card, and all hell breaks loose inside my brain.  See, this is where the calamity comes in.  Signing it "Mark, Sheila, and Ladybug" is nice, but I want to write a last name.  First names only seems so... Improper.  It's a somewhat formal thing, in my mind, to write out a family Christmas card.  I can't write out 3 different last names.  I don't go by my married name anymore, I use my maiden name.  Aleigh, of course, has her daddy's last name, and then Mark a last name of his very own (as these things usually go).  So my choices are, leave it first names only and informal and improper, or write out 3 first names followed by their respective last names.  That seems a little lengthy, wordy, time-consuming, and odd.  I mean, nobody else does that, do they?

"With love,
Jim Smith, Jane Doe, Junior Lastname"

Odd.  Lengthy.

Then, the hardest part.  I don't want to act like Mikaela did not exist.  However, I don't want people to get the wrong idea if I were to sign her name to the card as well.  What's the protocol for this?  If we were just the people who signed "The T***** Family" this wouldn't be a problem, but I am listing each household members first name, and I feel like by not including Mikaela's name and I am sending a message that I'm not thinking of her, that I don't want others to think of her, that she is in the past.  That's not the case what-so-ever.

What I also do not want, is to be that person that is "dwelling" on something that is, in fact, becoming the "distant past".  I don't want these people to read this card and feel awkward, or uncomfortable.  I don't want them to think I'm seeking their pitty or attention either.  I mean, is it appropriate to include a person's name on correspondence after they are deceased?  Not typically, but this would have been Butterfly's first Christmas and I would have been proudly inscribing her name on everything possible.  I don't have that opportunity.  Is it wrong to want to include her at least a little in something??!!

Ugh.

Never again doing Christmas cards. Never ever ever.

Bah-Humbug.

From Our Family To Yours - Merry Christmas!!!

Mikaela's Story - Conclusion



    An amnioreduction is something they do when a woman is carrying too much fluid. It becomes dangerous because it causes early labor, among other problems. I'm 36 weeks at the time they want to do my second reduction, and I'm all for it. I can barely walk, I can hardly breathe, everything hurts. They want to do it that day, but Mark is not with me, my mom (God bless her) has been taking me to my appointments so that Mark can take off work to be with Mikaela at the hospital after she is born. I guess I just had a feeling, and I asked to do it on a day Mark could be there, in case I had to be admitted or something went wrong.



During my fluid reduction, the day before Mikaela is born



    The reduction is scheduled for Friday, June 15th. I'm having nearly constant contractions, but they're not strong enough to cause me to go into labor. It's just uncomfortable. We get to the hospital early, they do the reduction. I have to stay for observation for a few hours after, because of the many risks. I'm still having contractions, but they're not steady or regularly spaced, and they're not painful or getting closer together. They're strong, but sporadic. But Mikaela's heartbeat is not responding well to the contractions. They want to keep me over night. Mark stays with me- they move me into triage. I'm afraid, they've tested the amniotic fluid for lung maturity and, as expected, her lungs are under-developed.

    The next morning, my doctor comes in. It's a Saturday, he's off that day, but he comes to tell me that they will be prepping me for a c-section. Mikaela needs to come today, her heart is not seeming so strong suddenly, even though up until this point it seems like the only thing about her that is working the way it should. I start making the calls - My mom is babysitting Ladybug, she has to wait for T to get Bug so that she could come to Houston. My best friend is at a hospital 4 hours away with her cousin, who is having a baby. She won't be able to make it. My other closest friend is in Houston already, she'll come by that evening. I'm scared, but I'm excited at the same time. Up until now, it's just been waiting, nobody can do anything, nobody can tell me anything. Once she's born, they'll be able to diagnose her and they'll be able to fix her. They'll be able to make her better.

    My doctor, Dr. Ivey of TCH, will not be doing the surgery, there's a team of OB-GYN's and neonatal specialists waiting to take me into the operating room. They are all competent and incredible people, and I am still so thankful to all of them for everything they did for me and my daughter. I was blessed to be in that hospital, with those people, even if under the worst circumstances.

    Mark is dressed in his scrubs - He's going in with me. The way the operating room at TCH is set up is great, while they're sewing my guts back into me, I'll still be able to see Mikaela and the neonatal team, thanks to a camera set up over the baby's table and the large flat screen that sits over where I'll be laying- Otherwise, I never would have seen my daughter while she was alive.

    As soon as she was delivered, the neonatal team went to work. She was on a manual aspirator, because of her under-developed lungs. At 36 weeks gestation, her lungs should have been almost fully developed. If she hadn't been so sick, she would have been able to breathe. But remember how I said she never took those little practice breaths? That stuff matters. Those little hiccups they get are an important part of their development in utero. I learned a lot during this pregnancy. I could probably pass the test to be an ultrasound tech by the time it was all said and done. I couldn't have worked the machine, but I knew exactly what I was seeing, I knew what the numbers and the measurements meant.

    So for 44 minutes I watched these doctors and nurses try frantically to keep her pumped with oxygen, and to keep her heart rate steady. When the doctor came over to tell us that they were going to try for a few more minutes, but they had done nearly all they could do, there were tears in her eyes. She was heart broken, you could see it. I would not have wanted to be in that position, I can't imagine what it must feel like to tell a new mother that they can't help her baby. Mark had tears in his eyes - our baby girl wasn't going to make it. It was a reality now - Not just a fear. They gave our beautiful, messy-haired baby girl to Mark to hold and he held her close to me and we cried... It was all over. Everything that we had wanted and prayed for was here, for a moment, and then gone.

    That night, Mark went back home. His brother was in town, and he needed a place to stay. Our dog needed to be fed and taken out. The cat needed food, and attention. So I was at the hospital, all alone. Lots of loneliness when a baby goes to Heaven. That loneliness never really went away - It's stayed with me, lingering over me most of the time, even when I'm surrounded by people that I love and care about. It's an emptiness that I don't think will ever be filled.

    The day that we were supposed to have my baby shower, we held a funeral. It was a beautiful service, at the cemetery where most of my family is buried. We laid my Butterfly diagonally between my amazing grandmother, whom I loved so much and miss every day, and my grandfather, whom I never had the chance to meet. Next to my cousin, who passed away a few years before. Surrounded by my family, people who loved me, and who would have loved her unconditionally. Out in the woods, far away from me, alone. Mark, Ladybug, and I, sat there; staring at the little white satin-covered box that held our daughter and her sister. Ladybug held me and she cried heavy, heart-breaking sobs, saying "Mommy, I miss Squishy." Yeah babe, we all do. And we always will. At one point, my Ladybug couldn't handle it, she asked to go stand in the back, away from her Squishy. That empty-armed feeling increased exponentially.

    The autopsy results came in about 2 and a half months later - Cause of death was under-developed lungs. She couldn't breathe. She was afflicted with spinal muscular atrophy, something I had never heard of. It was good to finally have an answer, but now Mark and I are left with the fact this could happen again. SMA is often caused when two parents carry a gene for the defect - Mark and I apparently both carry this gene. It's not a guarantee that any of our future children will be sick, but it's a probability. So not only is our first child together gone, waiting for us on the other side of life, but we may never be able to have a rainbow baby. A special child, conceived and born after a devastating loss, to help fill the gap left by tragedy.

    Every day that passes, I think about Mikaela. I miss her. I never understood women who would miscarry and be distraught that they had lost a child - yeah, I was one of those people. I mean, I didn't talk down to them about it but it seemed silly to me. But I realize after Mikaela, that if I had lost her in my 1st trimester, I would have been distraught as well. Maybe more so than I was losing her the way I did. I was prepared to lose my daughter; I prayed for it, honestly. I prayed every day to God, that if she was going to spend her whole life in a hospital, that if she would never have the opportunity to live and laugh and love like a person should, that I didn't want her to suffer. Part of it may have been selfish, because I'm not sure if I could have handled having a special needs child. It's not like she was going to be a little challenged; This girl would have literally spent the majority of her time in surgery or recovery, she would have been 100% dependent on someone, for her entire lifetime. And no, I was not looking forward to that.

    Does that make me a bad person? Does that mean I'm going to hell, because I prayed for my child to die? I don't think so.  Maybe under another circumstance, yes... But, I talked with God about this, for months. I still do. He's the one I turn to whenever my heart is aching because I don't think that Mark and I have been grieving the same. And I don't want to be that whiny person that none of my friends want to be around because I can't be happy and have a good time and appreciate what I still have. I can, and I do, but I need someone to talk to and it's reassuring to know that I can just close my eyes and pour out my heart and that every word is received with open arms and love. I'm sure there are friends of mine who would do the same, but they don't know what to say, and it's not their emotional baggage to carry around and be burdened by. So I talk to God.

    And you know what? He still hasn't spoken back. But I feel comforted after I do it, I feel a sense of peace and calm, if only for a moment, and I know that one day, I'll have the answers I'm looking for. And if I'm sad and inconsolable for an hour, and I can't get out of bed and my pillow is soaked through with my tears and the dog and cat are hiding because my sobbing is scaring them, I know that God is seeing and He is hearing and that He will give me the chance to hold my baby girl one day. My faith is what makes what has happened bearable- Without it, I could not go on after losing my daughter. And it's what makes it easier for Ladybug. She hasn't had a lot of exposure to religion and to God and Jesus, and that's my fault. But she will tell you that her Squishy is in Heaven, and that when we die, that's where she'll be, waiting. She will tell you that Nini [my mom]'s mom is holding Mikaela, and taking care of her, because they both died and went to Heaven because they were good people, who believed in God, who lived good lives, and who love us and miss us as much as we miss them.

Mikaela Evalynn was born on Saturday, June 16, 2012, at 12:43 P.M. in Houston, Texas.
She weighed 4 pounds and 3 ounces, and was 14 inches long. She lived for 44 minutes, thanks to the amazing people at Texas Children's Hospital, who are so compassionate and so good at what they do.

She had a head full of thick, dark brown hair, and never opened her eyes.

She is survived by me, her mother, Sheila, father, Mark, and big sister, Ladybug,

As well as innumerous other friends and family that will continue to love her as if she were still here with us.



Ladybug, Me, and Our "Mikaela Bears"



She is preceded in death and looked after by my grandmother, Florence Evelyn, who I know, would be honored at giving her name to this perfect little angel.



Mikaela's Resting Place - Taken The Day She Was Laid To Rest



Mikaela's Story - Part 4

    When the nurse calls me back later that morning, she says that there were problems. That I need to just relax and that a specialist will be contacting me. A maternal-fetal specialist that will need to run some more tests. Luckily, the specialist was a lot more on-the-ball than my OB-GYN. We set an appointment for the following week. This is on a Wednesday, I believe. That means I have to wait until Monday to find out anything else.

    Dr. Strehlow was the specialist. This woman is incredibly sweet and nice, she's very thorough in explaining everything that they see and what they think could be wrong. She recommends an amniocentisis to be done that done, I agree. I'd already expected it, thank you Google.

    After this I am referred to a doctor at Texas Children's Pavilion for Women. They'll want me to deliver there, because of the neonatal team. They want to make sure the doctor who handles my pregnancy and delivers me has the best team available and the best resources for dealing with whatever it is we will have to deal with. It will be a few weeks before we have any results from the amnio... More waiting.

    We'll skip ahead a bit- It's all kind of a blur anyways. This is during April, 2012. The next few months were weekly doctor's visits, either to Houston for my OB appointments, or to The Woodlands for more ultrasounds. The doctors and team are incredible, they are such sweet people and so caring; I refuse to go back to my OB-GYN. The way he just carelessly threw out the information that he had, the way he acted like I didn't matter, that my baby's health was the least of his worries, I will never be able to look at that man the same again. I have a complaint filed with the medical board- The way he dismissed me will not be forgotten and I am not taking it lightly. I was treated disrespectfully and neglected as a patient. I hope he loses his license. But that's just my opinion.

    For a while, as in the entire month of May, I was going to Houston once a week and to The Woodlands once a week. Two ultrasounds a week. And every week, it seemed that there was more to learn. We learned that the amniocentisis came back inconclusive. They did as many tests as they could, they compared our baby's DNA to mine and Mark's to find inconsistencies in her genetic make-up. They didn't think it was Trisomy 18, but they couldn't say 100%. There were just too many possibilites.

    Her arms and legs were a problem- Arthrogryposis multi-plex congenita. Her arms were drawn up beside her body and the joints were fixed, they didn't move. Both legs were straight out, she was in a sitting position with legs erect, they were fixed, they would never move. Also, she had club feet. There was trunk movement, meaning she could move her spine, but her chin was tucked down towards her chest and she didn't move her head much either. I would never feel my baby kick in my womb. Because she couldn't kick, she couldn't twist and turn and punch like little babies should.

    There was no way to get a prognosis - Nobody was able to say whether she would be okay, if she would live or not. If she did live, she would be hospital-bound for a while, lots of corrective surgeries. No way to know what her brain function would be if she did live. Would she be a vegetable? Would she ever have a happy fulfilling life? Would she ever crawl or walk or learn to talk? Nobody could answer these questions. They told me not to get my hopes up, but they told me to stay positive. We need to stay positive.

    Every week, it was something new. Then suddenly one week, I was overcome with optimism. My daughter would be here, at any moment. I was huge - I mean, really huge. My daughter did not swallow the amnioticfluid like babies usually do, she didn't take little breaths in utero, like babies should. So all that fluid was just building up inside of me, and I was gaining weight and gaining weight, my belly got so big it was a hazard to anyone or anything near me. Freakishly huge.

    Well, so anyways that optimism kicked in- a mix of joy and "nesting"- and I wanted to go ahead with a baby shower. I was panicky enough about a sick baby, but being unprepared for a baby at all? I couldn't handle it. We started planning my shower. Then, I went for my ultrasound. There was a protrusion on her belly- Something that wasn't there before. They think it's her liver, coming out of her belly. And another protrusion from her bottom- They think it's her bladder and her uterus. These things that should be inside her, things she needs to survive, they're falling out of her. It's like something out of a horror flick, something from a really bad story book.

    So, now we need an MRI- A fetal MRI. Pictures of each layer of my daughter and everything that is wrong with her, and another team of doctors telling me "Stay positive. But it doesn't look good." This means she will have more surgeries. She will have more time to spend in the hospital before we could ever think of bringing her home. But we can handle this- It will be okay. We'll figure it out.

December 14, 2012 - My Sentiments

   In the midst of this unbelievable tragedy that has taken the nation by surprise, I feel like I should say something.

    While I do know what it's like to lose a child that I loved with all my heart, I cannot fathom the pain these parents and families are in today.  It hurts my heart and scares me when I think that there are people so evil; it seems they really do just want to watch the world burn.  These mothers and fathers, they dressed their son or daughter for school, helped them brush their hair and their teeth, made them breakfast.  Maybe they were running late, maybe they were in a hurry.  They stole a quick kiss and hug, hollared out a quick "Have a good day, I love you" and ran off to conquer the day knowing in their hearts they would see their child again soon.  Truly believing that their children were safe and taken care of and learning new things.

    I found out about this tragedy just after my Ladybug left with her daddy.  She was excited, she was in a hurry.  I stole a quick kiss as she bolted out the door, hollared after her, "I love you baby, have fun and be good."  My heart is heavy with regret that I didn't pull her close and squeeze her before I let her walk out that door.  I'm kicking myself in the ass, thinking "Why? Why didn't I slow her down and look her in the eye and tell her I loved her and I would miss her and to be careful and stay safe...?"  I cannot, nor do I want to, imagine having to feel that way for the rest of my life.  Thinking that my last goodbye to my daughter was hurried and scarce.  It brings tears to my eyes and a heaviness to my heart.

    While the rest of the nation is shaking from what happened, these families will be planning memorials for their children.  They will be faced with decisions no parent should have to make in regards to their child, ever, at any age.  While I am closing my eyes to pray at night, they will be looking in at that empty bedroom and knowing that life has been irrepairably altered forever.  And what is perhaps most heartbreaking, while our children are waking up early on Christmas morning to open gifts, these families will be looking at their trees, presents still underneath- wrapped up tight, ready for little fingers that will never come to pry away the paper and tape to see what lies beneath.

    We should not be using this tragedy as a political strategy or focus point, saying whom should or should not have what.  What we should take away from this is that we are all people, in one nation, under God.  We are the brothers and sisters of those affected by this shooting, and we should keep them in our thoughts and our prayers.  And we should realize how truly blessed we are, each day that we wake up healthy and those we love are blessed to do the same.

    Hug your children when you leave them; Hug your spouse or your parents or your siblings; Hug your friends.  Whether you are going away for 5 minutes or until next Christmas, remember that there is no promise of tomorrow, and the world is changing every day.  Enjoy the moments you have with the people you love, take pictures, hold hands, make memories.  And don't ever, ever take that "I'll see you later" for granted, one day, it just may not come.

~Sheila Boone

Mikaela's Story - Part 3

My next appointment, I was a little nervous. I went to the appointment by myself, fidgeting but telling myself that everything was ok, that if there had been a problem I would have gotten a phone call. The doctor comes in, goes through the general questions,

Doctor: How are you feeling?
Me: Okay. Excited.
Doctor: Ok. The baby moving?
Me: No, still not really moving.
Doctor: Ok. *continues to flip through my file*
Doctor: So, I guess we'll see you again in a couple of weeks..
Me: Ok... Uhm, was everything ok on the ultrasound? The tech seemed a little weird, and they were having trouble seeing the left foot...
Doctor: *flips through file* Yeah... They said to consider the possibility of Trisomy 18. I'm not really sure why.
Me: Oh... What-- What is that?
Doctor: It's kind of like down syndrome. *writes something down in file*
Me: Okay well, what do we do? I mean, do I--
Doctor: I guess we can do another ultrasound.
Me: Ok....
Doctor: *handing me my file* Give this to the girl at the desk, tell her you need to schedule an ultrasound. I'll call you.

So I walk to the front of the office, and give my file to the lady at the desk, telling her I need another ultrasound, for as soon as possible; she's able to get me in that day. I'm waiting in the dr's office for her to give me my appointment time and I burst out into tears - Down syndrome. That's really difficult news to hear. If you've ever been pregnant, you probably know that it's not something you have ever really put thought into, you don't want to think that something may be wrong. You want to go into your appointment and them say, "Everything looks great, see ya next time!" But I'm trying to tell myself it must not be serious, I mean, if it were serious certainly he would not have acted so casual about it. He would have called. He would have brought it up, not acted like everything was ok. He would have been more clear, more concise, more on-the-ball, right? I mean, that's what a good doctor would do if they thought there was something wrong with a patient's pregnancy. Right?



Mikaela - 25 weeks and 5 days gestation



All this coaching I'm doing in my head is not helping at this point, so I start crying. The nurse behind the desk is looking at me and asking me, "What's wrong? Are you okay?" And I tell her that I'm just scared, that he mentioned Trisomy 18, that I have to have another ultrasound, that I don't know what any of this means and I'm just scared and I feel really alone right now... And she just stares at me, she doesn't know what to say. She doesn't have any idea what she could say. She obviously knows what Trisomy 18 is, and I would not have been okay if I had known at that point. "Kinda like down syndrome" does not describe Trisomy 18. The only similarity they have is they are both caused by an extra-chromosome. THAT'S NOT "KINDA LIKE" JUST FOR YOUR INFORMATION DR. WHACK-JOB. *regains composure* Back to my baby's story......

So the ultrasound is a couple of hours away. I leave the dr's office, walking towards the truck, and I call Mark, crying. I tell him that something is wrong, but I don't know what. I'm freaking out because there is something wrong with our baby and my doctor just blew me off and I have to have another ultrasound and I am so scared. He's going to meet me at the hospital for the ultrasound, but he's at work so give him a few minutes. I call my mom, I call my best friend, they are all speechless. We're all thinking it's going to be okay, it's just scary. Down syndrome isn't that bad, this little girl can still have a good life. She can still be happy and healthy, it will be a challenge, and that's why it's so scary, but it's going to be okay.

I have the ultrasound done, of course they won't tell me anything. "Your doctor will call you and tell you more." This was a long ultrasound. Not a happy ultrasound. It's a quiet room and it's dark and I'm scared to even look at the images of my baby, I'm scared of what I will see. It's all a foreign language to me. They're doing measurements and calculations and the ultrasound tech looks so grim and she's trying to be friendly and polite and professional but I sense the tension and it hurt my heart and my head and it was scary.

I take the next day off of work- Start calling the doctor the moment the office opens. And what do they tell me? The doctor won't be in til 2. TWO O'CLOCK IN THE AFTERNOON. At this point, I've looked up Trisomy 18. It's nothing like down syndrome. It's fatal. Almost guaranteed. Fatal as in, if you carry to term (key word- IF) the baby has a 50% chance of still-birth, and then less than 10% survival chance of living until her first birthday. I spent the night crying, researching through tears, praying and begging, no, this can't be happening. They must be wrong.

Mikaela's Story - Part 2

   My first doctor's appointment, everything was fine. I continued to have my regular appointments every 2-3 weeks as is the norm for a problem-free pregnancy. I told my doctor at every appointment that I hadn't noticed much movement. He just kept saying, "Oh, I'm sure that's normal". Yeah, just for the record, that's not normal. Babies in utero move, it's what they do, it's how their body prepares for life outside the womb. Lesson learned.

   So, we waited and waited until finally , it was time for the gender ultrasound (you know, around 20 weeks). I wanted a boy- I had my girl and I could just see those cute cowboy boots, and pearl-snap shirts, hair gel and ugh! All of it, my mind was going wild.

   So for those of you whom have had an ultrasound before, you know the drill. They do the measurements and what-nots, ask if you would like to know what you're having. They tell you "Look, there's one hand, and another hand... One foot.... Another foot." It's magical, you get to see the little baby tushie, you get to see the little button nose, profile and that creepy alien front view. And they tell you, "Everything looks good." and they say "We will send this all to your doctor and he will see you at your next appointment."

   Well, this ultrasound was similar. I got incredibly lucky, the hospital here in town had a sales rep from the ultrasound machine company there, they were trying out a new machine that included 4D Ultrasound. Oh I was ecstatic. The ultrasound lasted I think around 2 hours, it was long and it was great being able to share it with Mark, my mom and Aleigh (who was pretty much like "WTH is this, i wanna go play").

   There were some notable differences- The tech kept going back to the left foot, they were having trouble getting a good view of it. The baby wouldn't change position, despite the tech's poking and prodding with the ultrasound wand. I commented that no, the baby didn't move much, that I wasn't sure if she moved at all. She had a strong heartbeat, so I wasn't overly concerned. Lesson learned.

   Also, the tech and the sales rep kept looking at each other and talking quietly. I was getting nervous, they didn't seem to be as excited as I was, they seemed concerned. Panic was setting in, so to calm myself, I asked "So, how does everything look?" Don't ask questions you don't want the answer to. "We can't really discuss the results. You're doctor will call you if there's a problem."

   Exactly- My doctor should call me if there's a problem. The doctor who I have seen many times before this pregnancy, who's mantras after getting any sort of test (including paps, blood tests, etc.) was "No news is good news." And "If you don't hear from us, everything is fine".

   So, it's a girl. We leave the hospital happy and excited, go out for lunch together and head to Wal-Mart to get the pictures of the ultrasound printed off the disc we were given by the tech. I buy this adorable outfit, white with these big mod-style flowers, a precious little onsie with ruffles. It was beautiful, it was on sale. The first piece of anything I'd been allowed to buy for the baby so far. Oh, Heaven. The entire three weeks between my ultrasound and my next appointment with my doctor, I continued to tell myself that I was imagining things, that everything was ok.

Mikaela's Story - Part 1

This is the story of my angel baby, my 2^nd born daughter, first-born of my loving and oh-so-amazing boyfriend, Mark. This is her legacy, short-lived, but life changing. It all started sometime in September of 2011; there was a “pregnancy scare”. I was under a lot of stress at home and at work and was about 5 weeks late on my “cycle”. Of course, I had already taken a couple of pregnancy tests, but they were all coming up negative. This, however, did not make me believe I was not pregnant, since I had the same problem during my first pregnancy. After 5 negative tests, when I was in fact pregnant, got me a little gun-shy on the subject.

So finally I started my period, and the disappointment sank in. I was standing in the bathroom looking at myself in the mirror after my shower and Mark walked in and kissed me. I couldn’t resist, I told him I wanted to try to have a baby. Definitely not the most responsible decision I’ve made in my life, but most certainly not the least responsible either. What are the requisites for wanting to start a family with a person that you are in love with? Not just ordinary love, out of left field love. Unexpected, but so complimentary to who I am at my core. Two people who bring out the absolute best in one another. That’s a good start. Then I already have a child, a child with another man. But this man I'm with now is so good to her, and the way he looks at the two of us, I know that he is going to make a truly amazing dad- A perfect father figure in almost every conceivable way.

Financially, yes, the timing could have been better, but we weren’t broke. We were managing pretty well, and ready to leave the roommates behind and get our own place together. No, we hadn’t been together that long however; what is time, just numbers on a calender? So we decided we would give it a shot. We didn’t tell anybody what we were doing, just kept the magic between ourselves.

We were living in our own home now, not a fabulous neighborhood or a gorgeous estate, just a rental, but it was ours. It was liberating; it was quaint, and it was cozy. It was ours. I’m not sure how long we were there before I realized one day, I’m late again. I tried not to get my hopes up, I knew that stress, diet and everything else could influence my cycle. I had never been “regular” like that, so I didn’t want to psyche myself up for nothing. But, I bought a 3 pack of tests, and put them up for when I was ready. I waited about another week.

I woke up early for work one Friday morning, Mark was working nights managing at a local bar at the time, so he was still up and pretty much just getting home, settled and ready for bed. It was about 5:30 a.m., November 11, 2011. Hmm, I just noticed that, 11/11/11. Make a wish, right? Hmm.

So, I go into the bathroom and take the test. Almost instantly the little plus signs comes up. I didn’t jump or bounce or scream or yell, I just smiled and walked into the bedroom. Mark was looking at me anxiously, he’s not one for suspense, it was driving him crazy. “You’re going to be a daddy.” He ran into the bathroom to look at the test, we debated whether the faintness of that plus sign was a bad thing and decided it was all okay, we were going to have a baby. We were on our way to completing our family. We decided to wait a few weeks to tell anyone, but every day it was all smiles, all happiness, pure love. We were ready for this. We wanted this more than anything.

When God Gives You Lemons-

    It's been a pretty rough year around here.  For those of you who are not aware, my daughter Mikaela (Butterfly) was born on June 16, lived for exactly 44 minutes underneath the incredible efforts of the neonatal staff at Texas Children's Hospital in Houston, and then passed away.  One day, I will publish her full story, but I mention it today so you can understand why I, in the midst of this beautiful and wonderful Christmas season, am so thoroughly stressed out and so edgy and so quick to fall to pieces.  It's been a rough year, that just makes it nearly unbearable.

    So as Christmas is approaching, closer and faster, I am getting more and more overwhelmed by things.  Bills are coming at us out of nowhere, an astronomical water bill that was rather unexpected and used up every last dime of Christmas shopping money that we had, which was a hard blow for me.  Though we had bought for one another and for Aleigh, we had not bought for my little cousins that will be at my mom's for the gift exchance, we had not bought for my parents, nor for Mark's brother or nephew.  These are important things to me.  Family is very important, and this is really one of the first Christmas' that I was going to be able to buy something nice for each of these people, and I was very proud and excited and happy about that.

    I keep hurting myself, in case any of you missed that whiny ass blog post.  I didn't break my toe, I think I just jammed it pretty good, it was swollen and painful for a couple of days- poor little piggy.  These are all relatively little things on the big-picture/grand-scheme.  I know this.  I'm not completely shallow as to think this means that the world is crumbling around me because of these couple of little things.  But when you add these little things on top of that empty, hurt feeling that is building inside of me already with the loss of my beloved Butterfly, it really does feel like the world is crumbling.  It gets hard to hold your head up high and see the brighter side of things.

   I posted this on my personal  FB page the other day, and for those of you who did not see it, here it is:

I wanted to share this with all of you, this is my beautiful angel baby, Mikaela Evalynn, born and passed on June 16, 2012.
She meant more to me than words could ever express and my heart is aching more and more with each passing day, it's not getting easier, it's not getting to be a more fond memory, it's getting to be a greater, heavier, deeper sadness, emptiness, and aching inside me.
This Christmas will be full of family and love, but for me it will be full of heartbreak and tears as well.
I want all of you to remember this little girl this Christmas, and even if it's only when you close your eyes that night after spending the day with your loved ones, wish her a Merry Christmas and know that she was here, she breathed, she lived, if only for a moment on Earth, but eternally in Heaven and heavily on my heart.
~Sheila     

SweetAngel - I miss this little girl more than I have ever missed anything in my life, and every day I feel like my heart breaks just a little more when I think... of what could have been..
Though I know this is part of God's greater plan, it doesn't make it hurt any less, and it doesn't change it one bit...
I just wish it wasn't so hard... I just wish I'd had one kiss, one hug, one smile...
#Wishes

    I grew closer to God when I learned about Mikaela, when I found out I was pregnant I began to feel a closer pull towards Him and knew that something special, something amazing was happening.  I did not feel that when I learned of my pregnant with Ladybug, I felt freaked out, terrified, unwanting.  I love that little brat so so much, but Heaven almighty, I didn't until I saw her face.  Maybe that's selfish or foolish or a little too honest for your tastes, but it's the truth.  I did not want to be pregnant, I did not want to have T's child because I knew it meant I was stuck with him forever, in one way or another.  I'm so happy and thankful for her now, I am.  God knew I needed her to bring my heart and my spirit back down-to-Earth, to settle this wild-child.  And she did, more than I can put into words.

    But when I saw that little plus sign, that faint pink second line on that test, my heart skipped a beat for all the right reasons.  And my faith did not fail or falter as the pregnancy progressed and we learned more about what was wrong with our daughter.  Even when she passed away before I ever got out of the operating room, the only question I had was, "Couldn't she have lived long enough for me to hold her..."  I have truly put everything in God's hands and accepted that only He knows what and why.  And I believe that there was good in Mikaela's birth and good in her death and that everything, even the things that hurt, happen for a reason.  I believe this because I know that God has a plan, and I believe this because I know that God would not give us such heartbreak without a reason.

   But for a couple of days, I found myself stressing, asking God, "what I am doing wrong?".  "Why am I being punished?"  But then yesterday morning, my dad brings in the mail.  And in the mail is a prepaid mastercard, with my name on it, but it had no information as to why I had it or who sent it.  It dawned on me - It was from the mileage reimbursment department, for the gas money assistance I had filed for when I was pregnant with Mikaela, that I had long since forgot about.  See, I was making 1-2 trips a week to downtown Houston and back.  That's a solid 2 hour drive, more or less depending on traffic, but in a 6-cylinder truck and with summer-time gas prices.  We spent a lot of money in that time and we needed help since I wasn't working at that point.  So I activate the card, but there is no balance on it.  I call the company, and they say a deposit will be made on the 15th of this month, only a few days away.  Not only is it going to be a decent amount, but it will cover the extra money we had to spend on our "unexpected bills" - and then some.

    Then, last night, we are sitting around watching the American Music Awards, and there comes a knock on the door.  My dad answers the door and there's a peace officer, asking to speak with me.  My heart is racing, I can't possibly imagine why a cop is standing on my doorstep with a stack of paperwork in his hand.  I haven't done anything wrong, the traffic warrant and tickets that I recently aquired had been paid, in full, and I haven't sat for a moment behind the wheel of the truck for fear of that shit happening again.  Jail is not a joke, folks.  Even if only for a few hours, that shit sucks.

    So I stand there for a moment with this officer, I finally catch my breath and ask, "Am I in trouble for something?"  He says "No.....Just some paperwork..." and then, "I think maybe child support."  I let out a little squeak that causes him to look up, and without realizing who I am talking to a sigh of relief followed by "Oh- Sweet!"  He just stared at me like I was a moron, signed the papers, handed them to me and told me to have a good night.  It was for child support!  Now, I did not file for child support, but the state of Texas filed on my behalf.  And while I know this is probably quite awful for T, it is going to really help me out, like a lot.  I have bent over backwards since he and I split to make sure that he could see Ladybug whenever he wanted, and so that he only helped me with money when he "was able to" (not often).  I've always given him money when he needed it, even after the "My Story" stuff happened, I'm just soft-hearted that way, and when he needed help, if I had it to spare, it went to his hands.  I deserve child support.  I deserve help covering the costs of raising our daughter, I truly do.  And while I never would have filed for child support on my own (because I am weak that way), the state did.  And now he will have to pay.  And I am happy about this.

    And on top of all that, in between it somewhere, I picked up another client from the homehealth company, a client that will more than double the twice-a-month checks that I am currently receiving.  It's not like I'll be bank-rolling or anything, but I will be making a somewhat decent income without having to devote myself entirely to a full time position, and all of this happens as I am standing on one leg and sinking in quick sand.

    It's phenomenal timing.  All of it is.  It is God's way of saying, "Hey, I already gave you lemons.  But now here's the sugar, and the water, so make us some lemonade."  I am such a lucky woman, so truly blessed.  It's the little things folks, the little things!!!

~Sheila

Falling Apart

  

     Because it's not bad enough that I'm sick and feverish for going on 4 straight days, and it's not bad enough that my 4 year old hides her demons horns underneath that beautiful perfectly naturally high lighted blonde head of hers, and the dog/cat/boyfriend stealing the blanket all night long so i can't sleep for crap - let's add a BROKEN FUCKING TOE ON TOP OF IT ALL TO MAKE THIS WEEK JUST SPLENDID.

    Karma- WTF DID I DO THIS TIME!?!?! I thought I'd been doing good. I pray more for others than I pray for myself. I go out of my way to help the people who need it. I am constantly offering to lend a helping hand to people who don't need it, just to be friendly and courteous. I am forever trying to find ways to better myself as a mother and a girlfriend and a daughter and a person in general. I am thankful of every thing that has happened over the past year, EVERYTHING, because I know that there was a REASON for it. there MUST HAVE BEEN A REASON... And so I am THANKFUL, and it's fucking HARD TO BE THANKFUL FOR THIS YEAR!!!!! But this isn't good enough? I have to get kicked down, further and further and further until I feel like nothing but a bloody pulp of what I used to be.

                                                                                          *deep breath*

    I need a break, just a little break, not away from anything or anyone, just from this LUCK that's following me around.. Taunting me. Fucking everything up. It's like there's something out there in the universe saying "Give up." and "Get back in bed." and i DON'T WANT TO!!!! I have not been holding my head high despite having my world and my life and my dreams turned upside down only to just give up and crawl into a corner and let this world and this life pass me by.

    That's something the old me would have done. Something that 2 years ago, I happily would have done. But I'm not that girl anymore. I'm not the child that will run away from these problems and just pretend like I can make it all go away with drugs or alcohol or denial. That was the old me, especially the denial part. I own up to my mistakes and my faults. I own up to my losing battles and I tell myself that I will do better next time, that I will try again and I won't let myself fail. But how long can you keep that going when there is something out there chipping away at all the little pebbles that are keeping the boulders of your insecurities and inadequacies in place? I'm staring head on into a rockslide and I'm not sure if my cheery outlook and "It's gonna be better tomorrow" stance is going to hold it all back.

    I'm tired of falling apart. I'm so tired of falling further down this little black hole with just a prayer that whatever is at the bottom will be better than what came before. It's feeling like it's all the same old song and dance and I'm never going to come out on top; Like I'm never going to win. Doesn't everybody deserve to win once in a while?

Photos From

http://www.cavstheblog.com/?attachment_id=7970
http://covermyfb.com/covers/18666/red+flower+falling+apart
examiner.com



Stop asking me the same damn question kid.

It never fails, every time we get in the truck to go somewhere, Ladybug has the same question.
"Mom, why doors it look like the sun is moving?"
I have explained this to her fifty million freaking times. And I am tired of answering.I am done, done I say. I'm moving to Mexico, changing my name and never answering the same question twice.
#EndRant

Part 2: Domestic Violence Guest Post

This is a true story. However, I have changed the names. This is not necessarily my story to tell. But, I was extremely close to this situation and didn’t even know it was going on. Husbands that beat their wives can have a very good skill to conceal the truth.

Sarah is a mother of 3. I’m not entirely sure when the abuse had started. I do know that it was over a long period of time Sarah was constantly beaten and abuse. Her husband Richard was a sweet, charming man to everyone he came into contact with. Unless, you were one of the ones that were extremely close to Sarah, you wouldn’t have known what was going on behind closed doors. Richard would physically beat Sarah. She would have bruises all of her face and her body for days. The first two kids she had were definitely two that belong to the “happy couple”. The third was questionable. See not only was Sarah beaten, she was forced to encounter sexual acts with men that her husband had chosen so he could watch her; then would beat her again because she had slept with someone else. Finally, one day an ambulance showed up to their house in the middle of the night. All the neighbors gathered around expecting to see Sarah being wheeled out on the stretcher after hearing gun shots. Instead, Richard had gone too far. He threatened Sarah’s life and threatened her children’s life one too many times. Sarah finally got the courage and shot Richard in the head and twice in the back. All the surrounding neighbors were so sure that Richard had finally killed his wife and was shocked to see it was him that had died. No one that lived around them had pity for this man.

During the trial, Sarah was actually released for murder. They had found Richard’s ex-wife. She told her story of what he did to her. She had changed a setting in their house one day. He ducted taped her to the water heater naked. He left her there all day. On his return several hours later, he had torn the tape from her flesh, leaving whelps and removing skin. All he had to say to her was “You’re not going to make the same mistake twice are you?”

I’m not trying to excuse Sarah’s actions for what she did. But this man was a horrible man; that needed to be punished for the choices he made in his life. There are many women that aren’t strong enough to stand up for themselves. This story is just part of what I know. I don’t know everything that went on. But, you can imagine what these poor women had gone through.

Another point to see in this story is the neighbors. They knew about the violence. They were shocked to see that it wasn’t the wife that was dead. When you know about domestic violence, don’t feel like it’s none of your business. Sometimes the party involved that is being abused can’t find their voice to stand up for themselves. Be the one that stands up for the one that have lost their voice. Take a stand against domestic violence. If you don’t… the abused one could wind up dead. How are you going to feel then when you know you could have done something to save another person’s life? Sarah was lucky that she is alive and her children are alive. But, there are so many out there that aren’t so lucky.

Written By: Lizzy A. Pope