We have news!

Pregnancy number 5 has begun! Once again, I'll do a Q&A style blog again. If there's anything I've left out that you want to know, feel free to ask.

When did you find out? We found out a week ago today.

How far along are you? 6 weeks 1 day today

When are you due? August 19, 2012

How big is the baby currently? Baby is a size of a lentil. :)

How are you feeling? Tired! I can't get enough sleep. I've had some nausea but nothing too awful.

What was your first symptoms? Fatigue and a "cold." I have gotten a "cold' with every pregnancy.

Have you been to the doctor? Just for bloodwork. Tomorrow is my third lab appointment.

Were you trying? Not really. We weren't preventing either.

How did you tell? When I first saw the test, I called Chris at work and just said "Congrats Daddy" when he answered.

For my family, my niece helped me make a shirt that she wore on Christmas morning. It said "I'm gonna be a BIG cousin!!" It took a few minutes for them to read it, but once they did, they were ecstatic and bawling. :)

For his family, we used cookies. We used sugar cookies to write out "C + A = 3" and "8-19-12" below that. My mother-in-law and sister-in-law got it pretty quickly. His dad needed a little help.

Are you excited, scared, or both? Very excited. A little scared. I'm mostly excited but waves of fear definitely surface!

Bitterness

Lately, I've found that my bitterness is back. Almost every Facebook post about a pregnancy/baby/child causes me to feel very bitter. Really, it's not just facebook. JM's stupid celeb crap on the side is ticking me off too. I really don't care about who's due this month or having a baby or whatever...and I certainly have no desire to see the big pregnant belly that is on the side bar.

Of course, then there's the fact that while I know the pain would never completely disappear, I sure didn't expect to feel this bitter almost five years later! I hate this. Why do the emotions insist on resurfacing anytime I finally start to think "I'm doing pretty well"

(Yes, this is the same as my RPL post, but I would like to think that a few others read the blog that aren't from RPL.)

A New Kind of Dream

Over the years, I've had many dreams about our journey, none of them happy. Most of these dreams have involved another miscarriage. Usually, in the rare dream in which we successfully carry to term, the babe is diagnosed with histio shortly after birth. The dream I had a few nights ago was different.

I dreamed that I was very pregnant only I wasn't showing. In my dream, my water broke but I wasn't really contracting. In the dream, the hospital was very okay with me having a natural birth. Despite my water breaking, they sent me home to wait.

At one point, while waiting to go into active labor, we were at a store. I was sitting down to rub my belly during a mild contraction. A teacher from one of my schools saw this and asked me if I was pregnant. Beaming, I told her "yes." She then asked me how far along I was. Only, because I wasn't showing, she wouldn't believe me when I told her I was already full term, that my water had broken, and that I was contracting.

Also, in the dream I was telling both Chris and the doctors to just take the baby already. I was terrified at the thought of an infection now that the baby didn't have any amniotic fluid to protect it. I know that this bit stems from losing my brother this way. I kept saying "This baby will not die like Donald Nicholas did!" I think this is the only situation in which I would opt for (and possibly demand) a c-section). Those who know me, know that I am (and always have been) very pro-natural birth.

Anyway, I can't quite figure out what was up with me being pregnant and not showing. Maybe it has something to do with our plans to adopt. All I know is I was thrilled to have a dream where the baby was both alive and healthy. Perhaps, this is a sign that my subconscious is finally starting to heal.

My babies

Update (and possible TMI alert)

Everyone has been asking for adoption updates. I often don't know what to say. I feel like I'm letting everyone else down by telling them there isn't much to update but there just isn't anything to share. We have a fundraiser coming up soon. I'll share the link then. Honestly, adoption is super-expensive. Until we can afford to have the homestudy done, there won't really be anything to share. After we pass a hime study, we will apply for grants. When i know we have those, then (and only then) will we step up our search. THAT'S when we may have regular updates on the project. But please know that this is not a fast or easy process. Please don't expect us to have a baby in a years time. It's not likely. :( It's unfair, yes, but it's what we're stuck dealing with.

That being said, Chris has been bitten by the baby bug again. He wants to try while we wait...only without the RE. I have mixed feelings. Part of me feels like it would be dishonest to be fundraising for adoption and trying to conceive at the same time. But another part of me feels that if you're helping by donating then you really want to see us fulfill our dreams of becoming parents, no matter how it happens. (Any donors want to share your feelings on the topic? Please be honest.)

And then there's the stress. I've really been enjoying not worrying about where I am in my cycle. I like not forcing myself to have sex just because of the cycle day I happen to be on. Sex is starting to be fun again. We're having sex because we want to, not because we have to. I don't have a doctor telling me have sex this night and this night but not this one. It's no longer a chore to be intimate. I'm just not sure I want to give up this progress for temping, charting, cervix checking, preseed, and pills. Not to mentioned the Soy induced side effects. :(

A friend posted these two poems on FaceBook. Author unknown on both.

Sorry I didn't get to stay.
To laugh and run and play.
To be there by your side.
I'm sorry that I had to die.

God sent me down to be with you,
to make your loving heart anew.
To help you look up and see
Both God and little me.

Mommy, I wish I could stay.
Just like I heard you pray.
But, all the angels did cry
when they told little me goodbye.

God didn't take me cause He's mad.
He didn't send me to make you sad.
But to give us both a chance to be
a love so precious .. don't you see?

Up here no trouble do I see
and the pretty angels sing to me.
The streets of gold is where I play
you'll come here too, mommy, someday.

Until the day you join me here,
I'll love you mommy, dear.
Each breeze you feel and see,
brings love and a kiss from me.

The Cord
We are connected,
My child and I, by
An invisible cord
Not seen by the eye.

It's not like the cord
That connects us 'til birth
This cord can't been seen
By any on Earth.

This cord does it's work
Right from the start.
It binds us together
Attached to my heart.

I know that it's there
Though no one can see
The invisible cord
From my child to me.

The strength of this cord
Is hard to describe.
It can't be destroyed
It can't be denied.

It's stronger than any cord
Man could create
It withstands the test
Can hold any weight.

And though you are gone,
Though you're not here with me,
The cord is still there
But no one can see.

It pulls at my heart
I am bruised...I am sore,
But this cord is my lifeline
As never before.

I am thankful that God
Connects us this way
A mother and child
Death can't take it away!

Oh, how I miss my babies. We're coming up on Jillian's first "birthday" next week. Not sure what kind of cake Chris will make for her. Just over a week after hers is Dominic's "birthday." He'd be four. :( I hate when my dates are so close together. After Dominic's "birthday" we'll have just one more this year in November.

Broken Heart; Empty Arms

It's back-to-school time. That means sales and post galore of the first day of school. It seems that everywhere I turn there is a preschooler going to school for the first time. It hurts. Dominic should be starting homeschool preschool this year. (Well, technically if he wanted to we could have started last year but this year we'd be doing it no matter what).

I want to homeschool so bad! It's probably the thing I look forward to most...and yet I'm forced to wait another several years before I can do so. :( I want to be at a park right now or at the table working. I want to be trying to get Gwen, Aiden, and Jill to let Dominic work. (Even if that means they all have to nap!)

I want to be planning lessons and brainstorming. I want to know his learning style and be looking at Kindergarten curricula. I want to know if Gwen would decide she wants to do it with her big brother and doesn't want to wait a year.

I hate having to imagine what it would be like. I should KNOW. =(

Failed Adoption

I contacted a woman regarding adoption a couple of weeks ago and at first it seemed perfect. There were some red flags from the beginning but given her situation we decided to take the wait and see approach. However, as time went on we became more and more uncomfortable with the situation. In fact, in her last email to me she admitted that the paternal grandmother may try (and succeed) to convince the father not to sign TPR. That combined with many other issues was just too much.

We've been hurt so many times. I can't keep this going and have it fall through in Dec/Jan. (She is due Jan 13th, but with it being twins, chances are they'd come before that.)

I had a breakdown today. The emotions completely blindsided me. It's like I got pregnant four times only to be told "Psyche! Just kidding. You can't have them." Then go on to adopt twins only to be laughed at again. Oh, and let's not forget the time we tried to adopt my nephew only to have that fall through...and the teen that was considering adoption only to miscarry. I feel like I'm some cosmic joke...like I'm just a toy for God and the angels or something.

Scare of my Life!

Okay, so this is a bit late but I still wanted to post it.

On my way home from babysitting last Wednesday I got a call from my husband warning me about an accident. He told me "There is no way around it but make sure you're in the left lane because a car is on it's side in the right lane. The tow truck is here now." Sure enough, I got stuck waiting. While waiting SEVEN emergency vehicles passed. I thought maybe they were going to the accident I was in traffic for (but of course with the tow truck there that really didn't make sense).

Turns out, there was a second accident on the next road I take home. Immediately, I panicked. The timing was about right for when Chris would've been going through there. I did the only thing I could: I imagined the worst and prayed. Prayed that it wasn't Chris. Prayed for whoever it was that required all 15 emergency vehicles. When an ambulance left, no lights, no sirens, I really panicked. There were way too many emergency vehicles to be no injuries. I didn't even think minor injuries were possible. In my mind, the person had to be dead. I still didn't know that this wasn't Chris though. That freaked me out that much more.

Finally after an hour of sitting not moving with no cell service (and no courage to get out of the car and ask people on other vehicles if I could use theirs), I stopped the media. With my voice shaking, I asked the question I was terrified of. Did the accident involve a green Corolla?

Oh the relief! I had barely thanked them when the tears came. Tears of absolute joy. My husband was home safe and sound! As soon as I walked in the door I told him I loved him and pulled him in a long, tight hug. Then came the second wave of tears. With me unable to speak, he just stood there hugging me and confused.

After I calmed and told him, he told me he had known about the accident and had tried calling me to make sure I was ok. Of course I didn't have signal so it went to voicemail, leaving him worried that I was in the accident. He told me he was just getting ready to come out and look for me to make sure.

It was horrible. I never, ever want to live through that fear again!

Living with Histiocytosis

By now it's no secret that I am very involved with the "Histio Family" in honor of my best friend's son. As a result of my involvement, I have "met" many warriors.

One such warrior is 9 year old Taylor. She has ND CNS LCH, or Neuro-degenerative Central Nervous System Langerhans Cell Histiocytosis. What this means is that the LCH is attacking her central nervous system (think brain and spinal cord) and breaking it down. Because of this she also has Diabetes Insipidus, or DI. DI occurs when LCH attacks the pituitary gland causing the body to not be able to absorb water properly. Because of her illness, Taylor will always be on medications. She will always worry about the LCH flaring up again. She is currently receiving chemo therapies which not only make her ill, but also make her very susceptible to other illnesses and infections. While on chemo, she has to worry about the slightest fever. Even a low fever, that you and I might ignore, could mean a hospital admission for Taylor.

When asked if she wanted to share with others about her illnesses, she jumped at the chance. After receiving permission from both Taylor and her mom, I am sharing this because I think the world needs to hear it.

"My mom asked me if I wanted to try to talk about histiocytosis & tell people my story & I said yes. I want to tell people about Histiocytosis because if I tell people I have it they don't even know what it is. Alot of times they say that I look fine & don't look sick but I don't always feel fine inside. I know what it feels like to have histiocytosis & alot of the time it hurts. I have to have chemotherapy & I get really tired, I get bad mouth sores from chemo & then if I am hungry I can't eat, I get headaches, my belly hurts, I get alot of muscle cramps & I even throw up sometimes. I had to go to the hospital alot of times because I got sick with a fever. But the worst part is I can't do things with my friends or play soccer during chemo week & sometimes even when I don't have chemo because I just don't feel good. Sometimes I am afraid to go to sleep because I am afraid I am going to die. Dr. V tells me that I am going to be ok & I really love her for taking care of me. Even when I feel really bad I always try to keep smiling, I know that everyone worries about me & when I smile they smile. I know that histio is rare so that means alot of people don't have it but it doesn't mean that kids like me with histio don't matter. I really want to teach everyone about histio & help Dr. V find a cure so that it goes away & never comes back."

Wow. "I know that histio is rare so that means alot of people don't have it but it doesn't mean that kids like me with histio don't matter." You may wonder where she's gotten the idea that people think kids (and adults!) with Histio don't matter. To find the answer, you don't have to look any further than our government. Researchers are consistently denied grants and funding because Histiocytosis doesn't affect enough people. Instead the money goes to heart disease, diabetes, or childhood obesity. Don't get me wrong, those are important causes too, but do they really have to get ALL of the money?

And what about this part? "Sometimes I am afraid to go to sleep because I am afraid I am going to die." If this doesn't bring tears to your eyes, well, you just might not have a heart. Taylor is NINE. Just nine. For a nine year old, to be too scared to sleep, not because of monsters or the boogie man, but because she's afraid her disease is going to KILL her, well, it just breaks my heart.

So, now that I've tugged at your heart a little, you want to know what you can do. You can start by learning more at www.histio.org You can donate to research on that site as well. And, perhaps most importantly, you can spread the word. As a wise adult with LCH says "Make Histio AWARE, not RARE."

Due Dates and adoption

Based on EDD's (estimated due dates) I should have an almost 4 year old (in Oct), a 3 year old (next week), a 2 year old (in less than a month), and an 8 month old (tomorrow).

I hate July. It's one of those months that provides a strong reminder of what I'm not allowed to have for whatever reason. I know we're working toward adoption, ever-so-slowly, but it's not the same.

Do I doubt that I'll love the adopted child any less? Not at all. I've always wanted to adopt. In fact, I wanted to adopt LONG before I decided I wanted biological children. It's more the fact of knowing that my genes will never be carried on, nor will my husband's. I will never create a life that gets to live outside of my womb. I will never feel a baby kick inside me. I won't feel those first bouts of the hiccups. I'll never have my water break. There are just so many things you cannot do with an adopted child that you could with a biological child during those first 9 months of the baby's existence. I'd be lying if I said I wouldn't miss that.

And it starts!

Within hours of the announcement we had people asking how they could help. A few of those ladies, rather than asking, offered to run a fundraiser for us. The first is now up and running: https://kcardwell.scentsy.us/Buy?partyId=38314673

Kristin has gracious offered to let this run for 6 weeks and is giving us 100% of her profit from this party. Please take a look and spread the word. After 4 losses and more than a year of infertility, it feels great to be on the road to a baby.

New plan (again)

Hopefully, this will be our last ever 'new plan.'

Today we went to an adoption seminar. I won't bore you with all the details. I will say that Chris and I are both glad we went. There were three attorneys present that spoke about the local laws. Going in, I was nervous that this would either make it seem like it was impossible for us or that it would cause some bickering between us. If you remember from previous posts, we haven't exactly been on the same page about timing of all this.

Anyways, back to the plan. We're going to start with making a list of things that we'd like done before a home study. We're given ourselves one week to create the list. We're then taking one week for each item on the list.

Once the list is mostly done, we'll start looking for an attorney and home study agency. Then, finally, we'll start networking. :) I'm so excited and relieved to finally be moving forward with something.

Mother's Day

Since my losses, I dread Mother's Day each year. As the day approaches I talk to Mom and express my sadness and what-not. Every year, she goes out of her way to do something small in honor of my babies.

This year, however, the week(s) leading up to Mother's Day was/were a breeze. I knew it was coming, but it wasn't as nearly as hard as the past several years. As a result, I didn't talk about it. I didn't need to. This led to an all-out panic on Saturday night. What if, because I didn't make it known that I still need/want that recognition no one does anything? What if, because I didn't mention it to mom, she doesn't do anything? I tried to tell myself that I'd hold it together, and that it wasn't her job to do something, and really, I shouldn't expect it. And I didn't expect it, really, but I'd be lying if I said I didn't HOPE that she'd do something.

Well, as usual, my worries and freak-out was unwarrented. Within minutes of arriving at Mom's she sent Niecelet out with a box and a card. In the box was a gorgeous multi-colored pearl set that consisted of a necklace, bracelet, and earrings. Inside the card was a lovely, heartfelt, handwritten note from my sister. Turns out that set was from the baby because I'm her Godmother.

That's not all though. After that was said and done, mom gave me another box. Inside the second box was a necklace with a heart charm. The charm had the word "Love" engraved in it along with six little stones. Later, when we were alone outside, she pointed out the stones and said "There are 6. One for you, one for Chris, and one for each of your babies." Have I mentioned that I LOVE my Mom?!

I love that she makes it a point to do these things for me on the days I need them most. She does something each Christmas too. I hate that she has reason to understand but love that she does. I'm very lucky to have her as part of my support network.

As for pictures, I haven't gotten any yet, but hope to soon. When I do I'll share them with you.

A Post In Which I Talk About A Bit Of Everything

I know, I know, I'm a bad blogger. Once again it has been way to long. I'll start off by announcing that our first NTNP (not trying, not preventing) month was a bust. I didn't track ovulation, but I did start four days early. I'll see what happens next month and maybe we'll start tracking again to see what's going on in there. Yes, old habits die hard. I like the freedom but wish I knew what was going on with my body all the same.

Now, why haven't I blogged? Frankly, there hasn't been a lot to say on the topic of this blog. We're not on meds, not actively trying, and haven't really started with the adoption stuff. We have been plenty busy and I will give a brief general update but to post as things happen, I think it would take too much from the meaning of this blog.

When I started writing, I was in a difficult spot. We had experienced three losses, were starting testing, and taking the plunge into ttc again. I needed an outlet for those emotions and fears. Now, I don't need that as much, but I still want this blog's main focus to be about our journey to parenthood--it just so happens our journey has slowed to a crawl.

Anyway, the brief overview. Aside from work, we've been watching Niecelet grow. She's 18 months old and is talking in short sentences 99% of the time. She climbs, jumps, runs, catches, and if you tell her "no" about something she replies with "Yes." lol She is a little diva and we're so proud of her. (Though those moments of jealousy toward my sister absolutely still exist, they are a little less painful now.)

Aside from watching Des grow up, we've been busy with other things. Last weekend we participated in the second annual Hike For A Cure. I will not go in all of the details here, because once again, I don't want to deflect from the blog's purpose. If you want to know more, let me know. I'll be more that happy to share.

We've also been going through our things to donate to a community yard-sale next weekend to raise money for Fanconi Anemia Research. Chris's ex-coworker/girl I went to school with has a son with this awful disease.

Then, of course, there's Mother's Day this weekend. Mother's Day is always difficult. I'm not sure what I'll do this year to honor our babies. Of course, I never really know until the last minute.

On the 14th Chris and I will be attending an adoption workshop. Who knows what will come of that?

Let's see what else...I have four days booked where I'm covering for a teacher that's getting married this month. And in June (6-9) I'll finally be taking a course to get my CPST cert. Basically, I will then be able to give car seat advice guilt free. =D

Oh, and back in April, I hosted my second bone marrow drive and signed up more than 25 people! Looking forward to the next drive in October!

An agreement

Chris and I have reached a ttc/adoption agreement. You see, Chris isn't ready to be done. He wants to jump into soy if I'm not pregnant. I, on the other hand, am very ready to be done. After four years of losses and infertility, I'm ready to move on.

We talked about it again this morning and have agreed that we will continue to pursue adoption as planned. I have promised to not rule out soy but have asked to at least take a break for an undetermined amount of time.

He doesn't seem overly happy with the decision but he's not protesting it either. I need time for me. I need to get away from it all...get rid of the stress. We will not be preventing, but we also will not be actively trying to conceive.

Left behind?

Every few months or so on my RPL support board, we go through a changeover of sorts. It usually consists of a number of members getting pregnant. In my experience, when several conceive at the same time they almost always go on the get their rainbows together. Of course with new babies the members start posting less and less. (And who can blame them?) Occasionally a member will come back with occasional updates or even to rejoin the board as a ray of hope to the remaining ladies.

Usually around the time of the BFP boom we also undergo an influx of new member. This is what is happening now. We've had three new members this past week. I can't help looking at the board and wondering if once again, I'm going to be left behind. I've lost count at the number of women that have gotten their rainbow since I joined. Heck, I've lost count of the number of women that have gotten more than one rainbow. All the while, I sit back and smile and wish them the best. I am happy for them and am truly glad they are getting their miracles; but it doesn't change the fact that I want so badly to join them and am still so unsure that I ever will.

HEROES NEEDED

I am reposting a friend's blog post with permission. If you would like to visit her blog, you may do so here

This is not one of my typical posts since moving over to here. but its something I need to say, to share. Because I can relate in some small way. Because we once needed the hero.

I can still remember the day we were told Joey needed a Bone Marrow Transplant. And the thought that crossed my mind was “will there be a match?”

I was terrified. I help my breath. Melanie was tested. I felt so defeated when the results showed she was not a match. More tests… more waiting.

When I first called and there were “no matches yet, but some possibilities” I was scared. I was always afraid that a call would come that they just had no match for him.

Then the call came. I hit the floor, crying. I was in the laundromat when they informed me he had a donor. I can not tell you the feeling of being told your child has a hero.

Please, heroes are needed every day. Every child deserves the best chance to grow up they can get. I am asking, are you willing to be that hero? Are you willing to help save a child?

I ask because there are children whose lives hang in the balance, whose lives depend on a complete stranger giving a selfless gift, marrow. Children like Austin who need a match and don’t have one. Please, today, register as a donor. Register today and help save children like Austin. Give this family the chance our family was given… you will never regret being a hero… I am eternally grateful to Joey’s donor, and I write her letters, praying one day to thank her in person.

Change of tone

Within a few weeks the content of my blog will be changing some. I'll still talk about our angels, but the ttc aspect will no longer be here. We are done with medical assistance after tomorrow. If tomorrow's IUI does not work, we will be moving to adoption and that will be my main focus here. If it DOES work, then hallelujah I'll get to talk about pregnancy fears.

Today, I've already killed my phone battery. I had to call and cancel a job for tomorrow because of the IUI. I then called on some adoption options and of course called Chris at work to discuss it all. I have another call to make and hope to be sharing more details soon.

"Rare But Equal"

Today is the 3rd annual Rare Disease Day. What is Rare Disease Day, you ask? It is a large event organized by EURORDIS in in an attempt to raise worldwide awareness for all rare diseases. Forty countries are participating this year (including the US). There are 7,000 rare diseases in the US. Combined these diseases affect at least 25 MILLION Americans. To learn more about rare diseases in general, go to the Children's Rare Disease Network.

In honor of this day, I have chosen to do a special blog entry to raise awareness. I will be talking about five diseases, all of which affects someone I know. If, at any time, you want to know more about any of these diseases, please feel free to comment or email me. Also, all headers are linked to pages where you can find more information.

Langerhan's Cell Histiocytosis (LCH)
LCH affects 1 in 200,000 children and 1 in 560,000 adults. 76% of all LCH patients are under 10.

Langerhan's Cell Histiocytosis is a disease that acts (and is treated) like a cancer yet is not classified as one. It caused by an overabundance of histiocytes (white blood cells) that accumulate in various areas of the body causing lesions and/or tumors to form.

Treatment for LCH includes chemotherapy, steroids, radiation, and, rarely, a bone marrow transplant. Despite treatment, the disease can and does prove fatal far more often than anyone cares to think about.

Hemophagocytic Lymphohistiocytosis (HLH)
HLH affects 1.2 in 1,000,000 people under the age of 15.

Hemophagocytic Lymphohistiocytosis can either be genetic or secondary to a virus. (Yes, something as simple as a virus can be the start of your nightmare!)

When a person gets sick their t-cells and histiocytes (i.e. their immune system) activate causing an inflammatory reaction in order to fight off the illness. In a person with HLH a defect in their immune system allows this inflammation to exist. Essentially, their body is attacking itself.

HLH is treated with immunosuppressants and chemotherapy. This treatment is usually followed with a bone marrow transplant in attempt to rid the body of the disease once and for all. Without treatment, HLH usually proves fatal within two months. Even with treatment, the disease can be fatal. Not only are immunosuppressants and chemotherapy risky, but bone marrow transplants can have long-lasting and potentially deadly complications.

Juvenile Xanthogranuloma (JXG)
JXG is probably the least researched of the histiocytic diseases. Not much is known about the disease.

It is unknown how many are affected by this disease because it is thought to be misdiagnosed most of the time. Since the disease can go into spontaneous remission, these patients may never get their true diagnosis.

Patients with Juvenile Xanthogranuloma often exhibit as a rash as their first (and sometimes only) symptom. However, JXG can also effect a persons eyes, brain, spinal cord, lungs, liver, spleen, and other organs.

Because so little is known about JXG, there is no standard treatment. Sometimes, nothing is done. Other times a patient may undergo surgery, chemotherapy, or even radiation. When it comes to JXG, nothing is "outside of the box."

Diamond Blackfan Anemia
Diamond Blackfan Anemia is characterized by the failure of a persons bone marrow to produce red blood cells. Most patients with Diamond Blackfan Anemia are diagnosed in the first year of their life.

Patients usually start treatment with regular blood transfusions (which results in a build up of iron in the body causing the need for chelation therapy). The goal is to get them old enough and healthy enough to start corticosteroid therapy in attempt to send the disease into remission. However, this doesn't always work and some patients go on to receive a risky bone marrow transplant.

According to the DBA Foundation, 40% of all DBA patients are transfusion dependent, 40% are steroid dependent, and only 20% are in remission from the disease.

Fanconi Anemia (FA)
Fanconi Anemia is a genetic disorder that leads to bone marrow failure. The average life expectancy of a Faconi patient is 24.7 years.

Many people with FA will develop Acute Myeloid Leukemia (AML) at an early age. Even if the person, doesn't develop AML it is extremely likely they will develop some form of cancer early in their life.

In addition to the cancer risk, patients with Fanconi Anemia may have thumb and arm abnormalities, skeletal abnormalities, kidney problems, a small head or eyes, gastro-intestinal issues, small male reproductive organs, and/or heart defects.

Medically, doctors tend to work on managing the symptoms until the patient is 8-12 years old when the child undergoes a bone marrow transplant. A successful bone marrow transplant will cure the blood problem but the patient will still be at an increased risk for cancer.

How you can help:
Share your new knowledge. Share the links I have provided today. Write your congressman asking for government funding to save the lives of these children.

Donate blood and platelets at your local Red Cross or hospital. Sign up to be a marrow donor. Host a marrow drive to sign others up!

You can even donate monetarily at any of the sites for research.

Missing out

I love my niece. I really do. It has been an amazing 16 months watching her personality develop and seeing the joy in her face when she learns something new. As much joy as she brings to my life, she brings some pain as well.

I am jealous of her mother. My sister was not at all ready for a child. Niecelet's father is much less than ideal. In fact, he hasn't even seen her since Christmas.

She's also a reminder. Aiden would be four months older than Niecelet. Watching her grow up and do new things is a reminder of what he would be able to do already. She's already pairing words together to make mini-sentences "See dat?" "Did dat." "Da! Ca!" (Dad! [gpa] Cat!) She's running, jumping, playing hide and seek, spinning herself in circles until she is incapable of standing...and these are just her new things. I will never get to see Aiden (or Dominic, or Gwen, or Jill) do any of it and it hurts. :(

Then and Now: Depression

Last night I got to thinking about 4.5 years ago and comparing it to now. I was amazed at the change I see.

Four and a half years ago, about the time I met Chris, I was in a very dark place. I was suffering from Double Depression. I was suicidal and I was a self-injurer (which was very separate from the suicidal bit). I am not proud to admit this, but am not ashamed either. It happens, people need to realize that most of the time, it's NOT just a cry for attention. I was very sick mentally. I will not go into an awareness rant here, but if you want to know more about it, email me. What it boiled down to was I did not know how to handle my stress and emotions.

Since then, what I've been through is so much worse. In the last four years, I've four losses and a lot of financial stress. Nothing every compares to losing your children. Yet, somehow, mentally, I'm so much better off. I'm not at all suicidal and I do not self-injure (and haven't since Aug 30, 2006!) though I do think about it from time to time.

I think part of why I don't give in to those thoughts is because I won't let myself forget how awful that time of my life was and how truly addicting self-injury is. I won't let myself forget the pain...not the physical pain-that was nothing...but the emotional pain. I do NOT want to be like that again. Therefore, I do everything I can to not allow my brain to go down that path.

One thing I've had to learn in order to be successful with this is how to better handle stress. Sometimes, I get crabby and take it out on others(just ask Chris!), this is the best way to handle it, and I hope to improve there. The most effective I've found is talking about it. I vent on FaceBook, I vent in chats, I post here. I do whatever it takes.

A few weeks ago, I had a slip up where I was not effectively handling my grief. I could feel myself getting very close to where I was just over four years ago. It scared the crap out of me. I realized that I needed help and fast. In order to obtain this help, I started by talking to my best friend, Traci. She was amazing and just listened and encouraged me to talk to Chris. The problem was I still couldn't say out loud that I needed help. So we decided I should post on a private forum for women that have had multiple losses. Doing so gave me the courage to talk to Chris...sort of. I still couldn't say it so I emailed him what I had posted on the board.

Of course, he was amazing, as always. We decided that I would look for a support group locally and he would look into our insurance benefits. In my search I found TCF. I do not have a local chapter but they have a nightly chat online. I have attended many times and plan to continue going back. I have also made an effort to blog more regularly. These two things alone have made a huge difference. I am actually feeling more "normal" than I have in a long time. It's amazing what a difference a few years can make!

Dominic McDylan

Such an odd middle name don't you think? I think my dad might have been joking when he suggested it. I really liked it at the time and Chris didn't protest. Now...I'm indifferent. I don't hate it, but I also don't love it. Oh well, what's done is done.

I can't believe it's been four years. I honestly don't know what would have happened if we hadn't lost him. We were not ready for a baby, I knew that. BUT I also know, without a doubt in my mind, that I would have stepped up to the plate and raised my precious baby to the best of my ability. I often wonder if our relationship would have made it had we had a baby so early. Regardless, I miss him. Just because he was a surprise baby doesn't mean he wasn't wanted and loved.

If you would have told me four years ago today that I would be married to Chris, I would have believed you in a heartbeat. If you would have told me that despite still being with him, we still wouldn't have any living children, I would have said you were crazy. Never in a million years, would I have thought that I would lose four babies in four years time. I certainly wouldn't have thought that after our last loss we'd go one to using meds for a year and still not even be pregnant. But, it is what it is. We can't change it and I accept that. I just wish I knew how it would end up. Am I ever going to be a Mommy to a living, breathing baby that I gave birth to?

Gwendolyn Elizabeth

Three years ago today we lost our baby girl.

I'm at a loss for the words to express the grief we feel. You see, when you miscarry, it's not just about losing that partially formed baby. It's so much more. It's about the loss of dreams; the loss of opportunity.

We did not get to hear her first cry. We will not see her walk, learn her abc's, ride a bike, get a boyfriend, go to college, have kids of her own. We will not be able to parent, to raise her up into the beautiful woman I know she would have been. I won't get to breastfeed, to change her diaper, to hear her laugh, to hear her say "Mommy" for the first time and it hurts.

A lot of times, people who haven't had a pregnancy loss don't understand the intensity of the grief. It has been almost four years since my first loss and let me tell you it hurts just as much if not more than it did that day.

Of course with the emotional pain comes the physical pain. Luckily, that doesn't linger as long. Did you know that when a woman miscarries she essentially goes into labor? I didn't...at least not until it happened. Let me tell you, I don't think there is anything worse than lying in your bed, having contractions, and knowing that it's because your baby is dead and that this unbelievable pain is not at all going to be worth it!

In addition to the different pains comes fear. I'm terrified. If I get pregnant again, will it just happen a fifth time? Will I just keep losing my babies and populating Heaven? What if I never become a "mother"? In my heart, yes, I'm a mom, but I know others don't see it that way. How much more can I take? How much more can Chris handle? When is it enough?

Gwendolyn's Legacy

Has a nice ring to it, don't you think?

Last night in TCF chat, I asked for suggestions. I wanted something I could do to honor Gwen tomorrow. The response I got was wonderful. A very wonderfully supportive woman named Joanna, suggested that I ask people to do a good deed in Gwen's honor to continue her work. Maybe I should explain...

You see, when I miscarried Gwen at 11w, I was devastated. In my grief and fears for new pregnancies I found justmommies.com I quickly signed up and found the ladies to be wonderful. After a few months on the site I began hosting the recurrent loss board where I have been able to provide support to women for more than two years now.

Shortly after becoming host a member posted. Her rainbow baby was very, very sick. They thought he had cancer. During his hospital stay, I emailed her to check on him. She was happy for my concern and gave me her # to check on him any time. I'm sure you've figured it out by now, that precious rainbow baby is Joey and he didn't have cancer...it was worse: histiocytosis. As you likely already know, I have become VERY involved in raising awareness and volunteering for the nation's biggest histio charity.

All of this was set into motion by Gwen's passing. This precious little girl has made such a difference in so many lives despite never getting to take that first breath. I'd like to follow Joanna's suggestion and take it one step further. If all of my readers would do just one good deed in Gwen's honor tomorrow...think of the difference she'd make. If you can't do this, for whatever reason, it would mean a lot to me if you'd just light a candle in her honor at some point tomorrow.

If you do a good deed, tell me about it. I'd love to know what's being done in my baby's honor. If you light a candle, I'd also love to know. If you can, take a picture of it and send it to me. Thanks in advance!

Music

Music is so different once you've lost a child. Songs you never paid attention to catch your ear. Songs that were "just another song" have the ability to bring you to tears. There are many songs that have proven this to be true over the last several years. Some examples are "Hero" by Mariah Carey and "Still the Cross" by FFH. I reread the lyrics to both of these the other day and they didn't have the same effect...I guess it depends on my mood at the moment?

I have also found that there are times that I find myself looking for such songs; moments when I want to wallow in self-pity. YouTube has been very helpful in those moments. There is a plethora of videos relating to miscarriage on there.

One in particular has always struck a chord though: "Glory Baby" by Watermark. This song never, ever fails to leave me in tears. It's captures how I (and many others, I'm sure) feel perfectly.

Left Behind

Jude said it perfectly in TCF chat:

"I feel like I am standing still and the world is spinning without me. Sometimes I have to hold my breath and jump into the spinning world (to go to work, etc.) but most of the time I feel like it is just spinning without me."

If you've ever wondered what it's like to lose a child, there you go. I have felt this way many, many times. There have been times I've lost entire days caught up in my grief. When I lost Gwen, I may as well have lost three months. All I remember from that time is leaving the sales floor in tears while a coworker quickly jumped in at the register; not allowing Chris to so much as touch me; and having to tell my professors, his coworkers that we'd been pregnant and lost the baby. Oh, and I remember the hurt in my mother's voice when she realized we'd been pregnant and hadn't told her yet...he wanted to wait until 12 weeks. We were one week shy of that goal. :(

To say the world kept spinning while I sat still seems very appropriate. Even now I look back and wonder how on earth it's been four years since we lost Dominic and three since that horrible time with Gwendolyn.

"We Are Not Alone"

I recently found an online support chat room for bereaved parents. I was nervous at first that they might not consider me a bereaved parent since all of my children were lost during pregnancy. This fear has proven to be very wrong. They have accepted me with open arms. If fact, I've felt so welcome that I have attended every single chat since Friday night for a total of 12 chats so far!

Journaling and blogging come up regularly as it is a very healthy way of dealing with the emotions that come with losing a child. Last night, the journal topic "We Are Not Alone" came up.

It's an interesting statement. We're not alone because so many others are also hurting. It sucks. I love the support, but hate that anyone (myself included) needs the support. It hurts that I'm not alone because I know the pain they feel.

Yet, at the same time, we are alone. Very alone. No one can fill the void in our hearts. Not even having another baby will make me miss Dominic, Gwen, Aiden, and Jill any less.

I am alone in my specific grief. I have support, yes. But no one, not even Chris misses my babies like I do.

***DISCLAIMER: That does not mean I think he hurts or misses them any less. He just hurts differently.***

A conversation snippet I posted on my loss and ttc boards:

DH: "They were here for days. Not my fault you didn't eat more of them."
Me: "It's not MY fault I was nauseous for days."
DH: "It might be."
Me: "No it's yours."
Lex: "Hopefully it's baby's"
Me: "Yea, and you put the sperm there, so it's YOUR fault."
DH: "You put the egg there."
Me: "No, my sperm-donor that made me a girl put the egg there."
DH: "But you let the egg out, in that neighborhood, around that time...it was asking for it!"
Me: "Geez, this is going on JM..."

A Letter

To my least favorite Aunt:

Do you seriously get joy out of screwing with me? Either show up on time or don't come at all. (Though really, I'd prefer the latter.) This whole business of you showing up whenever you feel like it (a whole three days after you're expected!) is starting to really tick me off!

Sincerely,

Your Very Ticked Niece.

Jillian Evelyn

One year ago today, our youngest baby went to join her siblings inside Heaven's pearly gates.

This year has bought a lot of pain and anguish. A lot of medications and doctor bills. We have officially been trying for a year since our last pregnancy with no luck. In this year, we have put my body through hell with nothing to show for it. Sometimes, I wonder if Jillian was our last chance to get it right.

As I sit here, home alone, mourning without the support of my spouse, I try to remind myself of one thing: Joey. I know this may seem crazy, silly, or even stupid, to some, but it helps and I have to believe it to be true. One thing that has helped at least a tiny bit with all my losses was that God has some sort of plan. I don't always know what it is, and I sure as heck don't always agree (I mean, come on, taking FOUR of my babies?) but that doesn't change the fact that he has one. With Jillian, I firmly believe that He needed her to help Joey through transplant. Joey needed one extra angel and who better than a little girl who's mommy wanted Joey better so badly? You see, Joey went into the hospital for his transplant the week of Jillian's due date. I don't feel that's a coincidence. Joey beat all odds, he's here and doing better than the doctor's ever thought he would. I know God and His angels (Jillian included)had a hand in that.

Rough Couple of Days

Friday and Saturday were really difficult to get through. I know it was likely related to the upcoming anniversaries, but it sucks.

Friday, I subbed for an elementary art teacher. At one point, I was sitting at the tables talking with the students while they worked. The topic of families came up and the conversation went like this:

Kid 1: "Who lives in your house?"
Me: "Just me and my husband."
Kid 2: "You don't have any kids?"
Me: "No, we don't."
Kid 3: "So you just have a mommy and a daddy at your house?" (Yes!)
Me: "Not exactly. We don't have any kids, so we're not mommies and daddies yet."
Kid 2: (Back to her original question) "Why?"
Me: "It's just not time yet." (If this had been an adult, the answer would have been WAY different!)

What was I supposed to say?! The truth would've been very inappropriate, I think.

Then, Saturday, we set out to do grocery shopping. First stop was Costco. There were a good number of babies/toddlers there, but I was fine. Didn't seem to bother me at all. Then (after lunch) we went to Walmart. We grabbed cat litter and an extension cord before heading to the food. In the aisle with the extension cords was a very pregnant woman. For some reason, this really struck a chord. I started messing around on the iPhone to distract myself but then she walked closer. I ended up leaving the aisle while DH made up his mind.

After that, I purposely took the long way to the food to avoid the kids clothes and baby section only to find random baby stuff in the cleaning aisle!

Of course there were babies and toddlers everywhere in the store! One specific family I walked away from only to have them decide to head my direction!

It was all I could do not to break down in the store (multiple times). I swear, if we hadn't needed food so bad, I would have just given up and left. But we were in desperate need of groceries so I pushed on. I did refuse to get the milk though. I made DH go by himself to get it. (The milk is right next to the baby stuff.)

I did find that it passed after Walmart, but my mood was definitely less upbeat for the remainder of the day.

DH has been having a rough time recently, too. Friday night, he was struggling just to make it through Despicable Me. He said that the scene where Gru adopts the girls was hard to make it through. He said there were other scenes too, but that by the time he told me he could remember which ones specifically.

I know the night we put up the Christmas tree was rough on him as well (because he realized there weren't going to be any presents under it and there should have been a lot.)

Sorry this got to be so long. I don't guess I expect anyone to make it through this super long whine-fest. It helped a bit just to get it all out. (And if you did read it all, you deserve a cookie!)

Reflections

As I say goodbye to 2010 and hello to 2011, I can't help reflecting on this past year as well as look ahead at what's to come.

2010 was a sad year in more ways than one. Not even three weeks into the year I found out I was pregnant for the fourth time. We were so hopeful. I was on the MTHFR meds. This was going to finally be it. Sadly, just a day later, I lost our precious baby. That same week my OB informed me he thought we should move to fertility medication. Talk about a blow!

Three months into the treatment and we still hadn't conceived. At this point, I was declared "beyond my help" by my OB and was referred to the local Reproductive Endocrinologist. The RE did loads of testing and really made me feel at ease. Sadly, the tests were all normal. I say sadly because that meant we can't prevent this from happening again. Dr. I told me he thinks that our problem is likely genetic (despite the karyotyping being normal). This to me means we'll never know if we're going to carry to term. We can't prevent the losses if their genetic. And even if we don't miscarry, MTHFR puts me at higher risk for stillbirth. After all the testing and news (or lack thereof!) I was delivered yet another blow. Despite my OB's referral, since we had not been trying for a consecutive year (we had taken a break leading up to our wedding), he wouldn't help us until October. (Even though he felt we needed him!)

Fast forward to October, we go back and start meds. The second month on them we doubled the dose and moved to IUI (intra-uterine-insemenation). Much to my surprise, we STILL did not conceive. That brings us to now. Our insurance doesn't pay a cent for treatment so we've taken a little break from treatment to catch up financially.

This past year has been difficult emotionally (losing a baby and becoming infertile), financially (dr bills and 10 months of unemployment), and physically (you try bombarding your body monthly with hormones!). In those ways, I'm more than happy to kick 2010 to the curb. I have high hopes for 2011, but am reminded that I had those same exact hopes for 2010.

It doesn't help that January brings pain. January 19 will be one year exactly since we said goodbye as our fourth child joined her sibling in Heaven. January 30th will be the third anniversary of losing my sweet Gwendolyn...her death has been the hardest on Mommy by far. (I was furthest along with her.) Then February 2 will mark four years since we began this horrible journey...the day we said goodbye to our first.

I'd love to look at it as a New Year will bring nothing but good, but that seems naive. The first 31 days will suck. They will be full of sorrow and fear of what's to come.