Beyond Infertility

August 13, 2010

This and That

Filed under: Uncategorized — beyondinfertility @ 6:18 pm

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.

June 16, 2010

Screw You

Filed under: Uncategorized — beyondinfertility @ 9:44 pm

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.

May 23, 2010

You Just Don’t Know

Filed under: Uncategorized — beyondinfertility @ 6:21 pm

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?

March 5, 2010

Diagnosis?

Filed under: Uncategorized — beyondinfertility @ 11:44 am

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.

March 3, 2010

You know it’s bad when…

Filed under: Uncategorized — beyondinfertility @ 11:35 am

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.

February 18, 2010

Rare

Filed under: Uncategorized — beyondinfertility @ 11:36 am

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.

February 17, 2010

I could vomit.

Filed under: Uncategorized — beyondinfertility @ 3:58 pm

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.

February 15, 2010

More

Filed under: Uncategorized — beyondinfertility @ 11:29 pm

I didn’t break down in tears in their office. Does that count for something?  Today was Blue’s physi.cal ther.apy evaluation.  He can do so many things, but the quality of those things is a big issue.  I can go on and on about the nitty gritty details, but the end result is that Blue needs leg braces.  It was a shot to my gut.  A ball from left field that hit me straight in the gut.  I didn’t see this one coming.  In some small part of my mind, I had reasoned that he simply needed some stretching, balance training of sorts…something.

I’ve had to swallow so much hurt for Blue lately.  His speech, his drooling (another reason for the need for occupa.tional therapy,) and now by boy will need leg braces.  Instead of teaching my child to be respectful of other children who look different, my child will be that child.  My new job will be teaching him to stand tall, to overcome obstacles, and to persevere despite adversity.

We have two weeks until our next appointment.  I have all of my homework, and will diligently follow through.  My heart just hurts right now.  I guess my heart really is walking outside of my body these days.  He needs to get better so it will stop breaking.

February 11, 2010

Outside My Box

Filed under: Uncategorized — beyondinfertility @ 6:52 pm

In just over three weeks I’m going to step so very very far outside my box.  You see for over a decade now, I’ve been that woman trying to get pregnant.  Then, I was the pregnant woman.  Then, thank heavens, I became a mother.  So, somewhere in all that mix, I lost a bit of me.  I lost respect for my body, for my womanhood, and the time has come to reclaim it.  The other day I was sitting and reading Re.db.ook ma.ga.zine.  There was an article in there about a woman comfortably in her box.  Her sister on the other hand lived more on the edge.  However, her sister convinced her to step outside to do something.

What?

Boudoir photos.  I’m the proud new owner of more lingerie than you can shake a stick at!  In three weeks, I’m going to have photos taken.  I’m nervous and very excited.  However, I’m nowhere near as excited as my husband!  He’s pushing me to be even racier and edgier than I would have otherwise gone.  I love that man!  So, um, more about my thoughts on this later.  Small people beckon me.

February 9, 2010

Told you so.

Filed under: Uncategorized — beyondinfertility @ 12:36 pm

I talked to our a.doption so.cial w.ork.er yesterday.  They had told us to come back to them if we ever encountered any issues.  Considering the therapies that Blue will require, I figured it was at least worth a shot to see what services they could offer up.  I never expected an email back stating what we had really kind of known (through the words of the people that took Blue home from the hospital,) that his biological mother was an addict.  The conversation went as far as to say she admitted it, used while pregnant, and that Blue was born addicted.  As in my son had to go through withdrawal and not a damn soul at s.oc.ial s.erv.ices saw fit to let me know this.  I’m not sure if I was more pissed, shocked, hurt, dumbfounded, or what.  It sure as hell explains a lot.

It would not have changed our decision to adopt our son.  We were the third or fourth couple they asked.  Perhaps they told the truth to the first few couples, and when they got to us they were desperate?  It’s still not a good excuse.  So, we were given some instructions (although quite vague) on how to continue.  I will say that a link that a girlfriend of mine sent me was more informative.  That same girlfriend and I want our so.ci.al w.orker.s jobs’.  We can lie, not show up, not return phone calls, ignore emails, and overall be incompetent, and still have our job.  This is by no means a sweeping judgment of all workers.  I am sure there are a great many who do a wonderful job, and heaven knows we need more of them who actually care about the job despite it’s very difficult nature.

Seriously, how can you not be straightforward about something like this?

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