FET

Well dang if I didn’t just schedule us with our RE to do a FET.  We will start birth control pills in February, injecting in March, and have an early April transfer.  Whooooaaaa.  I can’t believe we are doing this.  However, my excitement tells me that we are doing the right thing.  I’m nervous about how I will feel about the outcome either way.  A bit curious to see how I feel about jumping back into the thick of it. 

I wonder how my life will look if this does work out?  I must be nuts, but I know I can’t play my cards any other way.

Busy

So, I was looking back over my calendar for the past few months.  Since May, I have not been home for more than one week at a time or if I have we’ve had company.  This will end in September.  That means, we’ve been insanely busy for the past four months straight.  Yowza!  No wonder I haven’t had a moment to breathe! 

I leave again this Thursday bright and early returning on Tuesday.  Then, on Thursday of next week my house gains three additional short-term residents.  So, there will be a lot more laundry, laughter, and craziness around this home.  Bring on the nuttiness!

This and That

There really isn’t much to report right now.  We are busy living life.  I haven’t been home for more than one consecutive week in months.  I expect that to change after next week’s trip to a Southern city to help my cousin, her husband, and daughter move here to where I live.  I’m super excited about them moving here.  I adore her like a sister, and it will be nice to have more family around.

Things have been good here in the past two/three weeks.  Prior to that things in my married life were utter crap in the marriage department. I’m not surprised since, well, um…we’ve had a lot of crap fall our way in the past year.  So, we are both working our way through that.  We’ve had a lot of honest conversation, and have found somewhat of a groove.  The introduction of babysitters has helped as well.  We need dates.  It has also helped that I have gotten a break here and there.  I was suffering emotionally and physically from some serious burnout.

Pink is teething in a HUGE way.  Her teeth are coming in out-of-order, and she is miserable.  Blue is now in preschool, and this frees up a few hours each week.  To be honest, I needed him to go to school.  We both needed school.  He needs other children, a different authority, and a chance to learn new things.  I needed a moment to breathe.

So, we are doing our best to keep everything in working order around here.  As for me, I’m just happy that things are going so much better now.

Screw You

Screw you Ro.yal C..arribean for not allowing special needs children in your kids club.  Thank you for furthering discrimination.  I laugh now at how she proclaimed that they are the Lex.us of the c.ruise world, and that Carnival is the D.odge N.eon.  She can take her L.exus and shove it, while I ride around happy and thrilled in my little N.eon.  I’m certain it’s illegal to discriminate in this way.  However, I’m also certain that they will use th loophole of “Well, he’s not fully potty trained.”  Whatever.  I refuse to give this any more emotional angst than I already have.  I will gladly give another cruise line my money…ok, my mom’s money (since it’s her treat.)  Blech.  Off to cook dinner now.

Outlook

I had forgotten how much I missed blogging anonymously over here.  Things have been so topsy turvy lately.  We really just don’t know what each day will hold.  However, I would say that for the most part, we are handling things pretty awesome.  We just continue with business as usual.  What’s really struck me lately is how differently each of us handles things. How we cope.

I am the kind of person who often thinks, “What is the worst case scenario?”  Then, I work calmly to become accustomed to that.  Then, if things are better, I’m super excited!  I don’t necessarily go straight to Blue is going to die tomorrow.  No, I just assume that things will be shorter than longer, symptoms worse rather than lighter.  I plan for them, expect them, and work towards acceptance.  So, if I get longer and less, I’m over the moon.  I don’t brood.  I don’t get pessimistic.  I guess I would call myself a realist.  We’ve had much death and tragedy in our family, and you don’t come away from that without being changed.  My outlook becomes a problem when others have a hard time “going there.”  I’m practical. For example, we have an SUV.  It’s already hard to lift Blue into it.  It’s too high for him to really climb into.  He’s going to get heavier and less capable of assisting.  So, if you ask me, it’s not a stretch to say that we really could use to get a minivan.  It’s lower to the ground, and it would make getting both children in and out much easier.  Well, a certain member of my family who we are close to (not my husband) rolled their eyes when I said my rationale.  Very annoying.  “Yank your head out of the sand and face reality!” is what I wanted to scream.  It’s hard to be one of the only ones operating within reality, seeing things as they are instead of what you want them to be.  I understand it’s a coping mechanism, but that doesn’t make it any easier.

I understand that discussing our son’s final expenses is very difficult, but these are things you need to plan for now.  We can’t just wait until the moment is upon us.  I am sincerely hoping that the day is far far away, but in the even that it isn’t, I want my son’s funeral to be beautiful.  That requires planning, forethought, and money saved.  It’s not morbid.  It’s wanting the best for your child even when their last breath has been taken.  That requires more strength than any parent should be forced to have, but it’s our reality.  I know this is hard.  I’m thankful to have some close friends who allow me to talk about as if it’s normal, because this is my new normal.

I’m also thankful that my mother copes in a very similar fashion that I do, or my life would be excruciatingly more difficult.  With her I can say things like, “When Blue is in a wheelchair…” or “Watch out, when that boy has a walker!  Holy smokes!”  These are not downer statements in my book.  They are reality.  This is going to happen.  Not a single child with his condition has avoided it.  I can hope that he might not have to, but I’m operating within the realm of “Of course it will silly!”  When Blue has a walker, he is going to be crazy stable and significantly fast!  Yes, it will suck.  I’m not denying that.  I would rather not ignore the fact that this reality is going to occur.  If I deny it, pretend it’s not going to happen, then I will be devastated when it does.  Make sense?

Blech.

On to happier.  It looks like Pink has taken significant steps towards walking the past two days!  She has taken 18 plus steps in a row!  Now, she still prefers to crawl.  However, she’s capable of doing it!  Hopefully soon, she’ll be toddling all over the place.  It’s time.  She’s almost fifteen months old.

On a crazy note, I’ve been seriously thinking about those embryos on ice.  In fact, itching to cycle.  I have said time and time again, that I was looking for some kind of reaction from me as to how I really feel about adding more children to our family.  I think I have my answer.  I know that after Blue’s diagnosis, I was quite fearful.  I had thought I knew, then that was a major knuckleball.  What has changed though, is how I feel about sharing that information.  I will not be telling my family.  Most of my friends, yes.  My own family and husband’s family, nope.  We don’t want to face criticism for the decision.  It’s so crazy personal.  I don’t think I could live with myself if I let them go.  I’m attached, and I’ve come to accept that.  I know that will make things a bit insane around here with Blue needing extra care.  I’m thankful that I have extra hands here every single day.  I also don’t want Pink to be all alone when my husband and I are gone.  I want her to at least have a shot at being an aunt.  Not that there is any guarantees there.  So, no sharing it is.  I will blog about it over here though.  Next summer everybody!  It’s game on!    That gives us time to move (please house sell!), establish ourselves in our new home, send Blue off to preschool for a second year (and be in kindergarten if the cycle is successful if/when number three comes to be.)

Ok, enough for today.  Off to weed the hedges.  I know, glamorous!

You Just Don’t Know

You just don’t know how you will react to a situation such as ours until you are in it.  We have some forward thinking family members who believe in all kinds of things.  They believe in the ability to heal others.  While this is readily acceptible in some cultures, and by some people, my husband and I are not amongst those that believe.  So, when you are face to face with the forward thinkers, who proclaim your child healed, you just never know how you will react.  I nodded and continued cleaning up after dinner.  My husband, whom I was not with when he was told, had a much more violent (as in emotionally) reaction.  His entire mood darkened, the storm clouds swirled behind his eyes, and it was clear he was shutting down.  So, I determined that he needed a system reboot, and I sent him on an errand that really didn’t need to be run. 

This is my second enounter with somebody who thought that our child could be healed outside of the medical realm.  If only those who said these things realized just how much it hurt.  My child is no more healed today due to their proclamations.  The the well meaning neighbor who shook my child’s legs and started shouting that the devile needed to leave them, thanks for scaring the shit out of my child.  The devil is not in my child, thank you very much.

So, while people mean well, this has been a VERY challenging week for us.  How do we respond to these kinds of things politely?

Diagnosis?

As I’m sure anybody who is looking for answers would do, I have been scouring the internet.  I’ve let one search lead me through a virtual world of acronyms and words I can barely pronounce.  A thousand clicks later last night, in an attempt to settle after a class I went to, I found something that made my heart nearly stop.  This diagnosis fits so well it makes me ill.  While not every single symptom fits, many, many, many of them do.  So many of the things that I have on our list of concerns are in black and white on that page.

On a daily basis I tell Blue, “Watch where you are going!”  He seems unable.  He falls randomly, bumps into everything to include knocking down his poor sister, but it’s all very clear that 90% of the time it’s not on purpose.  So much else fits, but I’m not going to run down the list now.  I’m in no mood.  Just know that most of it applies to a scary degree.  The main differences involve touch and sensory stuff.  Blue loves to be held and touched, but needs continual reassured that we are there.  He flips out when he can’t find you immediately.  He isn’t troubled by loud noises at home, but things like fireworks or other loud noises scare him.

I  will be certain to ask the neurologist about this one.  I’m not sure how it couldn’t be this.  Too much fits.  I’m terrified of the implications for when he is older and goes to school.  However, I am confident that we are creative enough to help him overcome so many of these obstacles.  We’ll just learn to live and think outside the damn box!  I’m just so sad to think that he might not have friends.  Please oh please universe, please let my silly and amazingly fun child have friends.  This world is too harsh to survive without them.

You know it’s bad when…

You know it’s bad when you think a cereb.ral p.als.y diagnosis is preferable to the one you just might be handed.  Everything went extremely well at the ENT.  His ears, nose, and throat all looked perfect.  Whew!  At this juncture, I’ll take anything positive I can get.  The ENT was top-notch.  He displayed genuine empathy.  He actually looked pained for us.  He said he would bet his career that this is something neurological.  Pretty bold statement.  I knew it would only be hours until we met with the pedi.atric orth.o.pedic doctor.  So, time would tell.

Between the two appointments the day went to absolute shit.  Four doctors appointments in two days has a way of making a two year old go absolutely crazy.  He was at his absolute worst behavior.  My mom and I just stared at each other, both knowing that we need a break….desperately.  More on that later.  We also knew that he was only acting this way because of the visits where they make him do the stupid human tricks.  He gets poked, prodded, paraded, and ends them in pain.  Not fun for him or for us.  I’m glad I didn’t know the worst was yet to come.

We got to orthopedic doctor a half an hour (as we were told we had to do) early, but they didn’t get us back into a room for an hour after our appointment.  Then, we waited an additional 45 minutes in actual “box.” As you feel like a caged animal.  Two small children, one little room.  There were no children’s books or toys, despite their office being strictly for peds.  What gives?  I had wisely put him in a pull up on him in the car between appointments.  I had thought he would nap, but that didn’t happen.  Ugggh, no nap!  His pull up was saturated, and so I stupidly put him in underwear.  Half an hour in, without warning he peed.  Great.  Now, he soaked.  I rummage through the Marr.y Po.ppins diaper bag, and thankfully had a spare pull up in there.  I put that on him.

So just as we are all on the brink of insanity, the doctor shows up.  He examines the little guy.  His specialty is in cere.bral pa.lsy.  He looks at us and very matter of factly states, “Nope, not cp.”  Our eyes dart to his with shock.  What the heck is it then?  We ask about a zillion questions, and the very short of it is.  Many of what he is exhibiting is the direct result of maternal substance abuse.  Fuck.  However, there’s more to it than that.  He believes that there is also something neurological on top of that.  There is no telling if what’s going on is fixable or not.  There’s no guarantee that anything out there can make the situation better other than good old fashioned therapy.  Shit.  However, he stated we would have to see the pedi.atric ne.urologist to figure out exactly what is going on.

I think my heart sunk.  I almost died when he said that in utero a part of his brain was damaged due to the chemical abuse he sustained.  That damage isn’t repairable.  With that he stood up and said he was also going to put us in touch with a develo.pmental pe.diatrician.  He said he would do his best to get us follow ups with the specialists as quickly as he can.  He was very kind, but not the sort to sugar coat things.  The thing that made me want to lurch the entire contents of my lunch was when he had sincerely looked in my eyes and said, “I wish this was cp for you.  You can help muscles and bones, but you can’t fix brain damage.”  All I could do was force a slight smile, nod in understanding, and blink a lot.  There would be no tears in front of my son.  No way in hell.

So, last night was hard.  We still sang with enthusiasm to our little Pink for her special day.  She devoured a cupcake, and we did our best to keep hope in our hearts.  We refuse to let go of the idea that there could be something out there that can help.  We will wait for the next appointment before assuming the worst.  We will work diligently on the task handed to us from the therapists.  We will do our best to make sure each day we do our best to help Blue reach his potential.  I won’t give up on him.  I won’t let him down.  Once we get his appointment we will know more, and hopefully get the big picture.

I could use some strength.  Right now I’m pulling all I have from the depths of my heart and soul.

Rare

Last night, without any nudging by me, my husband reached out to his parents.  It’s a very rare thing for him to do.  He told them how he was nervous and upset about the possible diagnosis.  He laid everything out there.  As it turns out the biological daughter was there visiting them.  His mother simply couldn’t help herself.  Bio daughter is here, but I keep waving her off.  Do you want to talk to her?  My response, you have to be freakin’ kidding me!  My husband is clearly trying to talk to you about our child here under this roof.  Can you take your damn one track mind off of that girl for one second and focus on one of your other grandchildren for a moment?  Clearly not.

My husband said she went through the motions, but the conversation died after she asked him the question.  He didn’t want to talk to her anymore, and they quickly hung up.  Something they could have talked to him about for some time, ended up in a three-minute conversations.  They wonder why he keeps them at arm’s length.  They hurt him last night, and they are too dense to even realize it.  Now his mother will play the injured party, claim that my husband is distant and cold…hard to get to know.  May I say, that my own parents don’t find him distant and cold.  They do think he can be difficult to understand, because he holds his cards close to his chest.  However, they do know that with patience, time, honesty, and talking to him, allowing him to feel, they will learn what’s going on.  They love him like a son, and it boggles my mind that his own parents don’t know his as well as mine do.

My husband’s response last night was classic, “Um, don’t you think this is kind of a bad time?”  Her response, “Oh.”  They make me want to pull my hair out.  #%$@^@#!  Ahhhh!  Enough said.

I could vomit.

So much of this fits, and we are going to have to figure some more things out.  However, this could be a viable diagnosis soon.  It’s only a mild case, and I keep reminding myself that Blue is in the minority of children with it who will be able to live independently, suffer few side effects, and thrive.  However, it doesn’t stop the sick feeling in the pit of my stomach.

I have never been a fan of hate.  Anger and hate only serve to hurt the person who is feeling the emotions.  They fester and spread their grasp throughout your being.  It only brings you down.  It doesn’t really help.  Often that other person you harbor these feelings for isn’t even affected by it.  With that said, I officially hate Blue’s biological mother for this.  No really.  I do.  Now, I  must learn to let it go, and to focus on what’s far more important…my son.