It Comes With The Territory...

Writing a blog can be a very interesting experience.  You are able to share the good, the bad... really, you can share whatever you want.  I happen to share a lot.  But in doing so, you open yourself up to the good (which is good!) and the bad (which is just kind of weird, if you ask me) and sometimes... the ugly.

It comes with the territory, I suppose.

Back in the day, this blog was really just a small journal that I started to keep family and friends informed of Gavin's progress during an intense and long hospitalization.  It grew over the years, but it was still small - and people kind of "got me."

Now... this blog has grown bigger than I ever (in my wildest dreams) could have imagined.  Which means I feel I need to write differently.  I feel like I have to choose my words - and describe everything in such a perfect way so as not to be misinterpreted.  That's really hard to do, let me tell you.

The other day my journal entry, "What It Feels Like Seven Months Later," is a perfect example.  In that entry I really vented my feelings... about, well, what it feels like seven months after losing our 5 1/2 year old son while simultaneously anticipating the surprise of a daughter while simultaneously parenting a grieving 4 year old.  I also vented about those "end of pregnancy feelings" that most Moms go through.  The exhaustion... the worries... the guilt... the fears.  I wrote that I have been dealing with high blood pressure issues related to my pregnancy and how they are keeping an eye out for preeclampsia.  It turned out that I ended up in Labor and Delivery because my blood pressures weren't responding to my medication (which has now been adjusted) the next day.  The timing made a lot of people connect those two things - Kate was super stressed and emotional and ended up in the hospital.  I suppose I should have expected the deluge of mail that included lectures... armchair therapists... and ridiculous comments like "go lay in bed and stop trying to do everything or your baby will die!"  I could list a lot more of the ridiculous comments, but I will spare you.

So I thought I would lay out some facts so everyone is on the same page - and no one has to worry that I'm doing anything - in any way - to bring harm to myself or this baby.  

1.  I had high blood pressure during the end of Gavin's pregnancy.  I do not have a history of high blood pressure - it was pregnancy induced.  Once you have a pregnancy with blood pressure issues, your chances of it cropping up again in other pregnancies is high.  So, no surprise, I had high blood pressure issues at the end of Brian's pregnancy.  And here I am again... at the end with Hope.  After every pregnancy, my pressures have returned back to normal.  I fully expect this will be the case after Hope is born.

2.  My blood pressure issues are more of a physiological response to my pregnancy and not necessarily worsened by stress.  That being said - I have carried this pregnancy successfully under extremely stressful circumstances - we just lost a child.  The fact that Hope is here at all is a miracle. And the fact that I am 35 weeks (and one day!) at the age of 43 is a miracle to me, too.  I set it up at home so that I actually have very LITTLE stress at this stage of my pregnancy.  It was the reason I set up her nursery so early... set up the equipment all over the house... washed all of her clothes and blankets and burp cloths and onesies.  It was the reason why I bought, assembled, wrapped and hid all the Christmas presents so early... created, addressed and stamped all the Christmas cards so they are ready to go... put up the Christmas tree and prepared for Brian's December 16th birthday.  I have nothing more to "do" or "prepare" - except grow this baby as long as I can.

3.  I do not have preeclampsia.  They are keeping a close eye on me for signs of preeclampsia, which means that I have excellent medical care.  I go for non stress tests twice a week to monitor the baby... I check my blood pressures at home to keep track of them... I get frequent blood and urine tests to check my levels and to be sure I'm not spilling protein... and when I do have to go to the hospital, I am closely monitored there.  Every single time there has been a problem - it has had NOTHING to do with Hope. She has been growing appropriately and always performs perfectly when they put her on the monitor.

4.  I am not on bedrest - nor does my OB WANT me to be on bedrest.  He said "try to put your feet up" to help with my swollen feet and ankles.  I laughed because, well, I have a four year old.  But the truth is - I drive Brian to school... come home... and I either sit on the couch or sit on my bed until pick up at noon.  Yes, there are seven hours with him until bedtime - but we aren't playing tag or running up and down the stairs and you'll never catch me getting up and down off the floor.  We're sitting on the couch or painting at the art table or, quite frankly, he's watching way too much TV if I can convince him.  But those seven hours can be exhausting because they just are.  I'm sorry, but I think they can be exhausting even if you're NOT at the end of a pregnancy.

5.  Back to the bedrest thing.  My OB actually prefers me walking around to keep the circulation flowing.  Laying in bed for too long puts me at risk for blood clots.  I take all of this seriously - please know this.

6.  I've had several people tell me that I should stop my blog - that it's causing too much stress and taking too much time.  That couldn't be further from the truth.  These are usually the same people that tell me that I'm also trying to spend too much time with Brian and that I need to find time to rest so I'm not so stressed.  And these are also people that don't know me personally.  So let me explain.  My Facebook page pretty much runs itself right now.  Gavin's photos are scheduled until the end.  The last photo will be this Friday night at 6pm, followed by a really special video at 8pm.  I do go on the page and try to read and respond to all the mail and comments - but I don't have to worry about the photos. My blog, when I write an entry, takes all of 10-15 minutes of my time.  I think... and I type... and I push "publish."  That method of thinking and typing can get me into trouble sometimes, but that's just how I write.  Let's take the venting post from the other day and use it as an example.  I wrote that post because, that day, I was really feeling overwhelmed.  Can you blame me?  The way I cope is to get it out.  I wrote about it... I posted it... I felt better... and the next day, I was back to normal.  It works for me.  Maybe it doesn't work for everyone, and that's okay!  But it works for me.  So telling me to stop writing - and then also telling me that I need to find a way to "de-stress" - doesn't make sense.  My writing IS my way of de-stressing.

7.  Venting like I did (and have done - and likely will do again) opens me up to a lot of advice and critiquing and criticism.  I get it.  But, just as in real life, when people "vent" they aren't always looking for you to "fix it."  Sometimes it's okay to just be a present observer... a kind supporter... you don't even have to say anything at all!  Sometimes, just like in real life, people just want to be heard.

8.  It is likely that I will have to go back to the hospital - multiple times or one more time or maybe even today - and it's possible that Hope will be born early.  If this happens, it is not due to me not taking care of myself.  It is not due to me writing.  It is not due to me playing Star Wars with Brian. Please do not infer that it is... because you will be wrong.  Out of all of my pregnancies, this has been the most perfect.  Can you believe that?  We expected these blood pressure issues. But I've never had a more perfect pregnancy - her weight right now is great - and I wouldn't need to receive injections to mature her lungs if I went into preterm labor or if my blood pressures force an early delivery.  This is all good news.  And, to be honest with you, I am extremely proud of myself for how well this pregnancy has gone under the circumstances.  Extremely.  I have had to manage a lot and I feel like I've been handling things well.  No one can make me feel differently about that.

9.  It is, thankfully, not that often anymore that I get mean and hateful comments or mail.  But it does happen.  It just happened yesterday when someone told me, among other things, that "you are so immersed in death that you are emotionally unavailable for Brian."  Listen - I have really learned to let these comments go... all they do is show the person for who they are.  My method in handling them now is this:  I realize that they don't know what they are talking about... or they are just plain mean and are trying to get a rise out of people... or they are projecting their own "stuff" onto my experiences... or they are possibly mentally unstable... and I delete the comment, say a prayer for them and move on.  

10.  I don't have a ten.  So I will say this - I am so, so grateful that so many of you are concerned about me... about Hope... about our family.  I know that so many of you have the best intentions and have become very invested in this little girl who, truly, is being dropped from Heaven.  It warms my heart to know that she will be born into a world that already has so much love for her.

It's all going to be fine.  I just know it.  We are all continuing to believe Hope born when she is ready... and we will all trust that she has many, many angels surrounding her.  It's all going to be fine.

The Pictures Tell The Story...

In our little family, we prefer to celebrate the "minute" details of every day.  

While these "minute" details may seem unimportant to some...they are everything to us.

We celebrate everyday miracles big and small.

And we plan on keeping it that way.

Sometimes you have to let the pictures tell the story.

Many of these photos are blurry...but that is the whole point.

I have (with sadness) decided to institute a few new "policies' on my blog.  Mostly to protect my feelings, to be honest.  This is my blog - about my family, and my life, and my kids, and my emotions and my parenting style.  It's not a public forum to decide to unleash your venom on me or to list all the things you hate about me or to tell me I'm a "joke" and a "helicopter Mom" or that you feel sorry for my "typical kid" and my "man" and that I make a "big deal out of everything that is minute in the sense of the word."  I probably shouldn't admit this, but it affects me a great deal when people go out of their way to tell me how horrible they think I am.  What is the point, really?  And when I know that I have accepted this commenter as a friend on Facebook...it makes me want to cry.  You don't have to agree with me.  I'm sure there are thousands of other bloggers out there that you can choose from that align with your way of thinking.  Just move on.  It really, really, really hurts my feelings.

I know it can be a pain sometimes to comment using your name or URL - but I am not allowing comments under "anonymous" anymore.  It's a shame because I get a lot of great comments under the "anonymous" profile whether people sign their names or not.  If you want to get a comment or a message to me, feel free to email me through the blog or head to the Chasing Rainbows Facebook Page where you can send me a message.

Speaking of Facebook.  I have naively accepted any and all friend requests over the years from readers who are complete and total strangers.  It doesn't take long (at least for many of you!) for us to become friends once that happens.  But I am sorry to say, I will not be accepting any more random friend requests unless we have some type of connection or correspondence.  EVERYONE is welcome to "like" the Chasing Rainbows page.  I just ask that if you stop "liking" it, just quietly go and don't go out in flames with a hate filled rant on the page.

Who knew that a stay at home Mom who is trying her best to be a good wife, raise a special needs kid and the little brother who loves him, and bravely share it ALL in the hopes to help others could inspire such hatred?

Please Remember This Story...

This past Thursday, I got a phone call from Gavin's geneticist.  The results are in from his Exome Sequencing  that we started way back in June.  This extensive and groundbreaking genetic testing was done with the hope that we'd get a lead on a diagnosis for our sweet Gavin.

While that is just what we got, I'm not quite ready to talk about that yet.

What I do want to talk about?

Paternity.

As you may or may not know, Gavin was conceived by IUI -  or "Intrauterine Insemination" - at a fertility clinic.  We were thrilled when it worked and we became pregnant with twins, only to lose Gavin's twin a few months into the pregnancy.

When Gavin was born, the first thing people noticed was his bright blonde hair.  Blonde!  It shocked everyone, including me.  But I knew that babies hair and eyes change and expected Gavin's to as well.

Ed and I didn't really think too much about Gavin's appearance.  We were a little preoccupied with his medical issues, feeding tubes, low tone, nursing care, pumping breast milk around the clock and more.

We didn't really think too much about it - but other people did.

People very close to us insinuated...came out with comments...made jokes.  People not so close to us would do the double take and shoot me a "look."  Gavin didn't look "Chinese enough"...he looked so different from his brother...where does the blonde hair come from...he's so fair...his eyes are so light.  

Six people (yes, I've kept track) in the last five years have actually come right out and asked me if I cheated on my husband.

After a while, we got a little defensive.  We figured we'd beat people to the punch and joke about it ourselves.  "Well, unless there was some mix up in the back room of the fertility clinic and they grabbed the wrong sperm, ha ha."  Every time I brought it up, I'd feel sick.

But the truth is - the more people commented and brought it up and raised their eyebrows and made their jokes - the more it messed with my mind.  For the last five years, I have experienced major bouts of depression over this.  I have cried many tears over this.  I have suffered horrible anxiety over this.  It forced us to have the conversation, "What if we ever found out that Gavin wasn't 'ours' biologically.  What then?"  The only way that could have been possible is if, by accident, a nurse grabbed the wrong syringe filled with someone else's sperm on the day of my insemination.

Let's face it - we haven't had the best luck all these years.  It isn't THAT far fetched.  Go ahead and google "wrong sperm used iui" and you'll see plenty of actual cases.

I don't think that I would have had so much anxiety and stress over this if people hadn't thought it was okay to comment on our son's appearance.  It really, really was not okay.  And it hurt us both tremendously.

Imagine my position.  Lots of people commenting and weighing in on Gavin's looks.  Me - worrying incessantly that maybe there was a mix up.  Then worrying - would Ed believe me if it was my word against a well known fertility clinic?

When they sent Gavin's blood work along with Ed's and mine to Baylor College of Medicine for the Exome Sequencing, we knew that a basic paternity test was part of the package.  We didn't request it - it was something routinely done.  Halfway through - I emailed Gavin's geneticist and asked her if they could cancel that part.  It was keeping me up at night.  I wasn't sure I could handle the repercussions if it came back with unfavorable news.  Unfortunately, I was too late.

So this past Thursday, as I sat in my kitchen with the phone to my ear, I heard the results.

Ed is absolutely, positively, without a shadow of a doubt Gavin's father (like we didn't already know).  Biologically and emotionally and in every good way.

The relief that swept over both of us made us both happy...and angry.  Happy that it's one less thing to worry about.  But, very immaturely, it also felt like a big "IN YOUR FACE" to all the people who thought it was okay to open their mouths and cause us great pain.

I don't ever want this to come up again.  And I hope that every single one of you reading this today will soak in this story.  Sometimes...a joke can go too far.  Sometimes...appearances mean more than what you might think seems obvious.  

Please remember this story.

The Party's Over...

Imagine.

Imagine if I came to your house for a visit to see you and your family. And imagine during our visit that you shared with me how you manage your calendar...how you discipline your children...what you feed everyone...how you spend your free time.

Imagine if the next day you found a letter in your mailbox. The letter detailed all the things that I disagreed with. How I thought you could manage your time better. How you really are using the wrong method of discipline. How it's reprehensible that you feed your children what you do, the way you do, when you do. How you are arrogant for thinking you deserve ANY free time since you really are such a crappy parent. Well, at least according to my standards. Getting a letter like that would suck, don't you think?

Getting comments like that on my blog sucks just as much.

This blog has taken a strange, gloomy turn. I suppose the more people that start following us, the less control I have over keeping the mean people out. I have never wanted to censor. I have control over these comments - and I can choose not to post one, some or all. I started moderating comments after THIS incident. To me it's a catch 22. If I only post the positive ones I would feel weird about that - like only people that compliment me are allowed to comment. I don't know how else to explain that - I just don't want to appear like an egomaniac. I've thought about having ZERO comments. But that would be awful. I get so many great ideas from other Moms and Dads. I feel like we have all learned so much from each other. It would piss me off to lose that because of a couple mean spirited individuals who don't even sign their name...and a couple meanies that do. I've also been advised that I can eliminate the choice of people commenting as "Anonymous"... which I am reluctant to do. Lots of people get flustered trying to figure out how to post using a name or google ID and then give up. I don't want to miss great advice or a smart tip! So from now on, I refuse to post any comments that are attacking, rude or judgemental. Unfortunately, I still have to read them - and they will likely still hurt my feelings - but no one else will see them. It does amuse me, though, to think of someone spending SO much time sitting in front of their computer crafting a hateful comment to me. I suppose in some weird way it can be strangely flattering to have a person spend THAT much time away from their own family to hate on me. Or not.

I've been very accepting of Facebook friends since I started writing - and that will stop, too. It's apparent to me that some of the meanest comments come from people who have friended me. I don't really know how to handle that at the moment.

If it gives the people who post these comments (likely to then see the big reaction that ensues) any satisfaction - yes, your comments have hurt me. And yes, I have cried. Feel better about yourself?

This blog started out HERE on CaringBridge when Gavin was very, very sick as an infant. From the beginning I poured my heart into my writing as a way to get through the days. Days filled with feeding tubes, scary testing, oxygen at night, braces on his hands and feet, scary diagnoses and more. I wrote and I wrote - and if you wanted to read you were welcome to follow Gavin's journey. Each visit meant a lot to me - and each visitor became like family. The CaringBridge site even featured us in a promotional video which you can see HERE so we could express just how much writing - and the readers - meant to us.

My writing is personal. Just as what you do behind your front door - or even in public with your own children - is personal. The difference between us? I share it openly. I don't claim to be perfect. I don't claim to know all the answers. I don't claim anything. I just share and share because it's something that helps me...and I've learned so much along the way from others in the same boat that take the time to write to me. My writing each day is a way to chronicle our journey. You think that's overboard? Hovering? Helicoptering? I don't give a crap. Do you know, if asked, I could pull up Gavin's progress over a year in Physical Therapy by pushing a button? And do you know that I have saved a huge, beautiful baby book here online for both children - with near daily photos? Maybe you wouldn't do that for your kids - and there's nothing wrong with that. Everyone parents differently because everyone is unique. I don't judge you. Please don't judge me.

I am a real person. This blog is about my real family. I don't take requests. I don't appreciate criticism. I take offense to rudeness. No one has the right to judge us. If you think I'm the worst parent in America, then by all means start your own blog about how you parent your children and stop reading mine. Just because you have a negative opinion about something or someone doesn't always mean you have to express it. It's just hurtful - and really unnecessary - to attack a Mom who is just doing her best and sharing her life. Imagine if we all supported each other and encouraged each other? The world would be a much better place.

If you want to follow our journey, you are welcome. I will continue to write about our days... about therapy... about poop... about allergies... about the boys diets... about gluten AND wheat free foods... about alternative medicine... about infertility... fertility... feelings... and more. What you won't see here anymore is hate. That party is over...starting now.

Imagine THAT.

Tomorrow I will post about Gavin's good news. I'm too riled up to post it along with all of this nonsense.