What to say...

So, my last post was kinda don't do this, don't do that.  And I'm not the least bit sorry for that, I think that when you know how your words hurt someone it helps you to use them in a better way.  I hope that for myself.  I've caught myself saying things that I realized afterward were hurtful and have also found myself apologizing for those things that I said.

Anyhow, on Pinterest the other day I found this and thought it perfect...

People think that you bringing up someone's dead baby is going to bring them down, but the truth is a recognition that we lost something means more than anything else you can do.  Just because you don't mention it doesn't mean it didn't happen and it doesn't mean that we don't think about it.  I'm a few years out now from having lost two pregnancies and then suffering a fraud situation with adoption, it does not hurt me for anyone to mention that.  It's ok to say, so  do you still think about your babies?  Is it different now than it was a few years ago?  What can I say to a friend who is going through what you went through?  Do you still get sad about your losses?

I promise you mentioning this to someone if you are genuinely curious or care won't hurt at all and will most likely make the person smile inside because they feel remembered.  You're not bringing up something that they forgot about.  When I worked in nursing homes the old ladies would tell me about losses and things that happened years ago.  One of my IRL friends still works in a nursing home and there are women there who have opened up to her about their losses that they never discussed with anyone.  Loss is loss and not talking about it doesn't change or take it away!

I will say that if you feel the need in any loss situation to start with "At least..." please stop there and know that what you're going to say will probably offend them on some level.  When you don't know what to say, simply say that you care, that you're thinking of them, that you are praying for the, that you are sorry for what has happened.  And if you don't understand, say that you don't understand, don't try to pretend that you do, just say that you care.  Today I found myself saying something to a friend and had to clarify that I wanted them to know I don't understand their situation, but that I hope they are at peace with the outcome.  

Knowing what to say is almost always impossible, so less is best, but anything is probably better than nothing.  

***It is always sad to me for a new person to be added to this Baby Loss community and I ask some really special prayers for one of Sean's classmates, who lost his daughter this week.  There are no words that can express my heartbreak for them, but I pray they can reach out to this community and find the love and support that I have and that as a couple God will work with them together to heal their broken hearts!***

Infertility is Forever

I'm sorry I've been so quiet I have tons to say still, but know that I will mention my child and never want to hurt anyone. That being said, I still have to write, so sometimes she will fall in here, but not regularly. 

I'd like to poll the number of people who have suffered infertility and been told one of these things...

1. Adopt, then you'll have a baby.
2. Oh now you've done IVF you'll get pregnant on your own soon!
3. Why don't you just do IVF? 

For some of us infertility is forever for one reason or another, OR a new reason to add to the old ones! 

Yes, some people get pregnant on their own after adopting or using ART. These people are in the vast minority, I'd love to give a stat, but I don't know one! I can only think of one adoptive mom off the top of my head who "just got pregnant" and she says how rare that is, in fact! It also discounts the truths of how hard and taxing and emotional and EXPENSIVE adoption is, that actually suggests that an adoptive parent is "settling", which isn't the case. Adoption is a calling, a choice, and certainly not one for the faint of heart!!! It's not a solution to infertility. 

More often you learn of IF women who do multiple cycles of IVF or FET (frozen embryo transfer, from a previous IVF cycle) with no baby to show for it. You hear of moms who previously had a baby with no problems via ART then losing a subsequent baby. 

The truth is, in some cases like mine, I may be able to get pregnant again on my own, but the likelihood is that without my Killer Bee medicine (what I prefer to call the Intralipids used to treat my Natural Killer Cell hyperactivity) any pregnancy I had on my own would end in miscarriage. For me (I'm not speaking for anyone else) that is not something I can chance! 

And why not "just do IVF?"? This is an ignorant statement, not stupid, but a statement made out of lack of knowledge (no blame here, I prefer you not know any better). I'll tell you why though, just to give some education. 

IVF costs at minimum $12,000. Sometimes up into $40,000. The vast majority of insurances do NOT cover it, mine included. It is HARD on your body. Have you ever given yourself a shot in the stomach? How about in your butt muscle? Did you know you can hit a nerve and cause permanent damage? Many of the shots cause hives, whelps, bruises, etc. 

During a typical IVF cycle a woman gives herself (or someone else does it) something like 80 shots throughout a cycle. **The picture on this post is the meds for an FET, which we IFers say is waaaaay easier! It's still approx 45-55 shots during a cycle.**

When I did IVF (and different clinics do it differently) I was on a low dose steroid for 63 days. I gained 15 pounds in those 63 days, almost half a pound a day. Yes, it came off during my pregnancy, but just consider that in 63 days I gained 15 pounds, then I lost that over the next 10 weeks, then gained 23.5 pounds over the rest of my pregnancy. That's a lot of weight gain/loss in less than a year. Not to mention you're pumping your body full of hormones. Some people do ok with this, some (like me) do NOT. I had OHSS (Ovarian Hyper-Stimulation Syndrome). That is where since you've been pumped with hormones to make your body produce more follicles (they become eggs) your body gets confused and just keeps doing it and keeps doing it. It basically feels like someone stuck a water hose in your belly and turned it on and forgot to turn it off. It was more painful than contractions I had for 7.5hrs without epidural. To treat it the doctor sticks a catheter/needle up you and drains out the fluid, no sedation, no pain meds. It feels like someone is stabbing you from the inside, because that's EXACTLY what they do. 

All of this happens and if all the stars align and all the meds work correctly and all the doctor's judgements are right, you get lucky and get pregnant. That does not mean that you will not miscarry. Plenty of IVF patients miscarry, just like a typical pregnancy. 

I've told Foxy that the hormones alone make me feel not like myself, which is so hard. It's something that most people don't understand and it's a choice. Is it worth it? Absolutely!!! If it works, and I've not been on the side where it doesn't (so anyone feel free to comment), but I've been told it does make you feel like you tried everything. 

So, that's Why. Is that helpful?!? I don't mean to sound condescending or rude. I honestly want to educate and help people understand what it's like to deal with infertility. How those comments that you say with a genuine heart are like a nail in a coffin and usually quite painful. 

I'll try to post soon on things that are helpful to say. 

These kinds of things shouldn't happen

In October I started going to see a trainer here in this sweet little town we live in, because my husband was going and he encouraged me (not in a you're fat kinda way, but in a I think you'll actually enjoy this kinda way).  The trainer is a lady who is technically old enough to be my mom, but more like a fun aunt to us.  After a few sessions she and I hit it off when we discussed fertility, or lack thereof.  She and her husband (who is from the city next to the one I'm from, yep already liked him) suffered with the horrific journey that is infertility, back when even less was known about it and even fewer people talked about it.  So, obviously, she and I hit it off, besides the fact that she's hilarious and crazy and shows me pictures of how she dresses up her poor boxer in all kinds of costumes, and she let me bring my child to sessions.

This weekend she lost her son, her only son, her much answered prayer, who was loved and adored probably more than most kids.  He was only 26.  These kinds of things shouldn't happen.  When this type of thing occurs I can't help but scream out to God in absolute frustration.  THESE KINDS OF THINGS SHOULDN'T HAPPEN!!!  I am eternally grateful that He is big enough for my anger.  But one of my immediate gut reactions was to want to stop every stupid thing someone would say to them, to just block the mouth of the person that says "God has a plan", "Everything happens for a reason", "At least he's not suffering anymore".  My friend and fellow blogger, Lori, posted about this recently and the things that people say and how inappropriate they are.  This family is a faithful family.  They know God, they trust Him, they rely on Him and I have no doubt His arms are the only things holding them up right now, but you, nor I, have any clue what God's plan is, or how He will work this for good, or anything of the sort.  So, I just wanted to take my hand and cover their ears or slap it over the mouths of anyone who might say something that would hurt, even if it was completely unintentional.

These things shouldn't happen.  This family shouldn't have lost their only son to a rare disease that still is leaving things unanswered.  They shouldn't be left with no son, no grandchildren, and broken hearts.  Please lift them up in your prayers, as I know that is the only thing we can do at this time.

National Infertility Awareness Week and Giuliana & Bill

It is National Infertility Awareness Week and I always feel the need to address this topic.  Obviously, because I am an infertile.  Yes, I have a child.  I am still an infertile.  I have an issue that does not allow me to just "baby dance" and have a baby naturally.  We prevent the possibility actually because I am terrified of losing another baby.  For me personally, I could not live with it if I were to get pregnant again and lose another baby because we just tried to do it on our own.  It feels irresponsible to me to put a child in danger like that.  So, I am infertile and have lost two babies.

I'm not one of those people who gets pregnant easily either, it has been hard for me to get pregnant.  In 3.5 years I got pregnant only twice on my own, and both of those times there was a LOT going into it, not just a lucky "baby dance" and a baby at the end.

Fertile people know nothing about ovulation kits, timing intercourse, charting temps, taking fertility meds, pumping yourself full of hormones, having fluid ultrasounds, giving sperm samples, the list goes on and on and it's awkward to write.  It's probably awkward to read, I promise you, it's more awkward to live.  It is not something that I wish on anyone, but it is something that I think I should be able to discuss freely when I need to because it is my life.  It is my struggle.  I shouldn't be expected to be quiet because it's not "socially accepted".  People used to not discuss cancer either, and now we champion it, we do walks/runs, fund raisers, wear special colors on special days.  I want that for infertility.

I want to never have a conversation with a friend who cannot try to have their own child because insurance doesn't cover fertility treatment.  Infertility is a disease.  It is like cancer in that it have a variety of causes and etiologies.  In my case it's an auto-immune issue.  So, lupus and rheumatoid arthritis are covered by insurance, requiring very extensive treatments.  While mine doesn't require on-going care, I can't get IVF covered to insure a healthy baby.  I am not saying that these things are the same.  I am saying that all of these things should be covered for all of us!!!!  I want to continue to get the word out there about infertility and push to have fertility treatments as part of all insurance policies, so that I don't have to discuss with another person ever how they can't grow their family because they can't afford the expenses associated with the treatments.  I also don't think that infertiles shouldn't be able to adopt because they can't afford that either, it actually disgusts me!!

And from there I must transition to discussing Giuliana and Bill.  If you don't know who Giuliana and Bill Rancic are, you might live under a rock, but that's ok because there is no need to keep up with all celebrities.  I actually don't keep a bunch of celebrities myself, but these two I LOVE.  Seriously love them.  I'll tell you why, because they are real.  Giuliana is hilarious and all about fashion and celebs, but  they are so genuine.  Their lives have been chronicled on their reality tv show.  They tell all about their struggle with infertility and they are honest about the struggles, they are real about the feelings, the pain, the depth of emotion.  Then sweet G is diagnosed with breast cancer during an IVF cycle, which was tragic, and though they have frozen embryos, she isn't allowed to get pregnant for 3-5 years.  Being infertile I can't imagine being told that!  So, the news broke this week that they have used a gestational carrier and are expecting a baby late this summer.  I have to be honest and say that I AM THRILLED for them!!!!!!  I wish that I could see her and Bill and give them huge hugs!!!!!  It seriously almost made me want to get a twitter account just so I could tweet her!! Saying prayers for a healthy baby for them.

Praying also for miracle babies for all of those still waiting.

Infertility awareness, please spread the word!!!

Three years later

Three years ago yesterday was my first EDD (expected/estimated due date).  There seems to be something about the three year mark that hits us BLMs kinda hard.  I'm not really sure what that is, as it doesn't seem like a significant timeframe for any specific reason.  Maybe it's that people think by now we shouldn't even remember anymore that our babies were due on this date.  For me, this year was hard on this date, moreso than last, as I feel last year I was in such anticipation of my rainbow baby, but this year, it was more of a reminder of what wasn't there.  Having a child makes the pain much easier in some ways, but in others it just makes you see even more what you missed out on before.  I doubt that will make sense to people who haven't been there, but for those of us who have, when we look at our children we now know just how much love is there, how having a child changes everything and we wonder.  We will always wonder, what would that child have been like?

I'm not sure what all caused it, but yesterday was marked by a migraine and hubby working, which left me solo with the migraine, and really solo with the thoughts in my head, as this isn't something that he remembers.  Luckily I do have some sweet friends who do remember and I got some sweet messages.  I also talked to a friend who is still waiting for her child, and I think that made me even more sad, because it breaks my heart to watch people continue to wait, to dream about being parents and watch it happen all around them.  Being in that place is gut-wrenching, sad, lonely, and painful and I wish I could protect people from it.  Another friend of mine suffered a miscarriage last week, which I mentioned already, but her fresh pain made me sad all over, deep within my soul, as I know that pain.  I know the ache, the emptiness, and the crash of "well meant" sentiments that are really more like daggers stabbing you repeatedly.

Three years seems to long and so short, so much has happened and changed. I am a different person, and for that I am grateful, as I think it's made me a better person, but I am a person who bears scars that will never go away. Mostly I am grateful for all of the wonderful people I have met on this journey, who know my feelings, celebrate their kids the way I do, can sympathize with complete joy and sadness intermingling, and who have helped me walk this journey thusfar!

Today, I reflect on yesterday and I think it was a hard day, and I'll never think "it was worth it" to lose my first (or second) child, but I do know that I am a better mommy than I would have been and I hope my children can always see that.

Love and kisses to heaven to my sweet girl, Layla!  Mommy loves you!

Two things I loathe...

Cancer and miscarriage! Today one of my favorite blog friends is going in for a D&C, which they will forever list in her medical chart as an abortion, I know because my chart says the same thing. For someone who has spent years trying to have a baby to have to see "recurrent abortion" on your paperwork is the definition of cruel to me! This is her second physical loss and third actual loss when you include her adoption that fell apart. It seems unfair and we all know this life is unfair, it's not the way God intended it to be! He made us for joy and we released evil and it's been steady at work ever since! this friend lost her mother to cancer on this day years ago and now she will walk out of the hospital she left her first son in today without her third child.

Then a friend of mine's dad was diagnosed with lymphoma last week. I know this disease, it took my grandmother when I was too young to understand, but I remember it hitting her liver and her being severely jaundice. The thing is my friend's mom has been battling breast cancer and it's reoccurrence for years and years now. Both parents with cancer, really?!? That's not fair either, life isn't fair!

I was watching Guliana and Bill last night that I have on the DVR and she's had both infertility with miscarriage and now breast cancer. Unfair, and yes, I like them, I love the honesty with which they share their lives and think that for Hollywood types, they're pretty good people!!

I wish miscarriage and cancer were things we read about in history books! Seriously?!? Why are they still around?!?

Summer cut

So O'Hara's favorite pass time is rolling around in our yard. It's obnoxious and terrible because this time of year she ends up with oak tree things all in her fur, they were ridiculous this week, so Foxy took her to the groomer...

Poor girl, they scalped her, but she looks like a Chihuahua now! And way less of the outdoors is being tracked into our house, so that's nice!