“You’re doing a good job”…and where that leads me

 

Today was our first visit to a new pediatrician for Monkey.  We visited the practice a week ago for Bear, but saw a different doctor.

This doctor was an amazing resource and we had some great discussion.  He was full of advice and clearly respected my opinion and the knowledge I have of the children.  He also took a lot of Bear’s history into account because they have the same diagnosis.

I giggled at one point when he was examining Monkey and said “He’s the poster boy for hypertonia”.  Monkey is much less affected than Bear, so if he thought Monkey’s tone was high, wait till he meets Bear.

We ended the visit on a good note and with a few vaccines (poor baby, but he was such a champ!).  Then he busts out the “YOU’RE DOING A GOOD JOB.  IF YOU EVER FEEL OVERWHELMED GIVE US A CALL.”  I explained that we have excellent family support and that we’re all working hard and Monkey is doing a great job.  He keeps going with “YOU’RE WORKING SO HARD AND WITHOUT YOU HE WOULDN’T BE GOING THIS FAR.”

This just struck a nerve with me.

1) I just met this practitioner, he doesn’t really have experience with Monkey or anyone with their diagnosis so it just felt like fluff.  Like he was saying it because he should.

2) I’m not doing a GOOD job.  I’m doing MY job.  I am a mother.  I signed on for this role when I got pregnant.  I am going to work my hardest to help my child anyway I can, just like any parent would do.

3) By telling me I’m doing a good job and discussing whether I’m overwhelmed, you are just reminding me that everything I feel is normal, is not.  That what I’m used to is not typical and not easy and it’s hard and never going to be normal.  It’s this lovely roller coaster ride of grief.  I’ve finally gotten through to acceptance, this is my life and I’m going to make it as normal as possible. We are a family, we go to the beach, the amusement park, the pool, the park, we hang out, watch movies, have friends over, etc.  This is NORMAL.  It has to be, because if I’m going to think of myself as “abnormal” or that I have it way tougher than anyone else, the future is a pretty bleak place.  I’ve had to change my viewpoint.  I have 2 children.  They may be different, but they’re still children.  We all still laugh, they have personalities, Monkey loves cupcakes, we all love swimming, we have bad times that are very bad, but we have good times.  And those good times are phenomenal.  Maybe because the bad is so bad that we know “it could be worse” or maybe because we know how far we had to travel to get to the good times that we can appreciate them even more.

4) And yes I’m overwhelmed.  When I picked Monkey up from his stroller, I hugged him tightly to my chest and let myself cry.  I am overwhelmed with love for my babies.  They are each a piece of my heart walking around outside my body.  And I think I love them more than typical parents because of how much they need me. To know that pieces of my heart are encapsulated in less than “typical” bodies is even scarier.  To know that pieces of my heart are going to be stared at, pointed at, possibly discriminated against, mocked and/or ridiculed is overwhelming.  I overwhelmingly love these boys so much, that at times it does hurt.  To know I cannot “fix” their hardships, or let them take the easy route can be heartbreaking.

And then Monkey gigglesnorts (a totally infections giggle/laugh that ends in this super huge snort-probably because he found a morsel of food) and I know, it’s okay. I daresay, normal.

Just when you think you're starting to climb out the other side

Grief comes back in full swing.
I KNOW it takes a while but with this new round of genetic testing the reality of the situation is very scary.
They're testing for a lot of very scary disorders.  By very scary, I mean fatal. 

The worst part?

Results can take up to 4 months.  4 months?! Yes, 4 months.  4 months of not focusing on my little guy who could be very sick, but instead focusing on my little guy who is moving mountains.  He's rolling with enthusiasm and has figured out how to move on his back by shimming and pushing with his feet.  Granted, it's not the RIGHT way, but it's something.

I feel like I have two file cabinets in my brain.  One filled of all the information I learned PRE-Bear.  Calculus, Statistics, Statics, Machine Design, PLC, Thermodynamics (I majored in engineering), how long to cook a chicken, best way to clean a microwave, etc.

Then there is filing cabinet #2.  It's one of those big monstrous ugly gray office ones.  Not the pretty wood, blend into your decor ones.  And it's filled with files of Bear. Microcephaly, Sandifer's Syndrome, hypertonia, hyperreflexia, GERD, Failure to Thrive, Lumbar Puncture, Neurotransmitter Diseases, Lysosomal Enzyme Screens, Metabolic Disorders, Mitochondrial Disorders, X-Linked Genetic Disorder, Prevacid (generic Lansoprazole), Baclofen, Valium (generic Diazepam), Propofol, Versed, MRI's, CT Scans, unknown etiology, NICU, and the list goes on.

These aren't files that I ever thought I would need.

And ya know what that bottom drawer is filled with?
One file folder.  Labeled : Fatal Disorders.  And you know what's in that file folder?  NOTHING.
Because I can't imagine my life without my son.  I can't imagine the moment of receiving that diagnosis.  Heck I can't even type it without tears rolling down my cheeks much less actually think or learn about it.

I have a rare genetic orthopaedic disorder.  I've known about it for 4.5 years now (despite having it my whole life) and I can still barely grasp the concept.  Thinking that my little guy may not be permanently mine is just unbearable.

It makes me want to pack him up and run.  Run somewhere safe, somewhere that I can't be reached.  Because, surely, if you cannot receive test results then they don't exist.

You'd find us here, marveling at the view. 

Life has given me lemons.  I'm not quite sure I'm able to make lemonade just yet.  I might need to find some raspberries.  Mmmm...then I'd be able to make raspberry lemonade.

Today isn't a total bust.

It was pouring out this morning as we had a huge thunderstorm pass through. But it's now sunny out while we wait for the next round of storms. It seems that we're in the hole of it, some people around us are getting nailed.

I've got cloth diapers on the line and a baby napping in the crib.

Wait??!!

A baby napping the crib?

Why, yes, yes I do!!!!

For the past 4 days, Bear has decided that napping in the crib is not a plot against him.

He used to go down after about 30 minutes of rocking for naps and would wake at the 30 minute mark (do babies have internal kitchen timers because you could bake a cake to it. It would then take me 30 minutes, if not more, to settle him down and get him back asleep. And we would start the kitchen timer again and repeat. So if you like math as much as I do, that's 60 minutes of sleep and at least 60 minutes (usually more like 90) of effort to put him to sleep.

Last week at some point he was getting fussier and fussier while being rocked to sleep at night. Hubs was getting frustrated so we said, fine, let's put him in the crib with his soother and seahorse on.  We put him down, gave him kisses, said "Night-Night" and left.  He cried for about 2 minutes.  Sort of.  He would escalate to a cry then immediately quiet down.  He rolled side to side pretty vigorously and gradually began to slow down, as did the fussing.  Finally, he was silent for about 2 minutes and slowly turning his head side to side and the next thing we knew, HE WAS SOUND ASLEEP!

Apparently, he's been trying to tell us that he is done with being rocked to sleep.  So now we rock him for a few minutes to get some snuggles in and then we put him down, give kisses, say "Night-Night" and leave.

I have held him for his naps his entire life.  Probably once or twice a month I would put him in the crib to see if the 30 minute nap monster still lived.  So 4 days ago, I was extremely frustrated.  I was trying to get him to go down and he was wiggling and squirming. When I was patting him and rocking him and jiggling him he started laughing at me.  So I told him "Tough luck Bear.  It's nap time."  I got up, put him in his crib, gave him kisses, said "Night-Night" and walked out.  He proceeded to fall asleep in about 2 minutes WITHOUT A PEEP!  He woke up after 12 minutes, cried for 30 seconds and fell back to sleep for an hour.  He then woke up, I gave him a paci and he slept for another 1.5 hours.

Naps have been going well since then, he's better rested and I'm not so touched out at the end of the day.

I can do my chores (blogging) while he naps and we're all happier!

Sometimes special needs

bites your wallet in the butt!

I posted recently about my new diapers.  Well I've had to sell them all. The Thirsties diaper covers fit very well over the hips, too well for Bear.  He is so stiff that the pressure from the diaper makes him unable to move his hips.  I tried BumGenius and all was well. 

Bear has thwarted my plans, however I did manage to sell all 3 Duo Wraps and 2 Duo Diapers.  I'm also selling my Beco because we can't use that either.

This week is an off week.  We had therapy and 9 month vaccines today (over 2 months late) so I planned an easy rest of the week.  It's hard to do therapy when his thighs are sore so these were the last appointments for us until the 10th.

Speaking of 9 month vaccines I have Bear's stats.
He's 11 months old and weighs 19lb 1oz.  He is 28 in long.  So he's in about 25-30% for height and weight.  Which is so funny, because everyone including his doctors always remark about how big he is, "He's huge!!!' is a common remark. But he really isn't.  I think it's because we struggled so much when he was little that all of a sudden he seems to be growing well.

I think the poor medical assistant feels bad telling me how small his head is though. She always measures Bears head circumference and NEVER tells me how big it is or if it's on the growth chart, but she gets all vocal and animated about his height and weight.

Last month his head was in the 2-5% category which is holding steady.  According to the geneticist in the NICU this isn't worrisome.  He felt his head was small from molding at birth and as long as it grew on the curve it was fine.

Bear is rocking up on all fours and reaching for toys with intensity that I have never seen.  We still struggle with solids on a daily basis and moving his limbs independently.  He is the toughest little guy I have ever seen, you should see him in his walker at therapy!

Bear - Finally Home and the Future

The one thing that has saved me when wading through the special needs mud, is that I just want him to be happy. If he need me forever, then at least I'll make him happy.

But then, no matter what I did, he didn't stop screaming. I felt like a failure as a mother. He screamed all night, he screamed all day. He screamed if I rocked him, if I put him in the carseat, if I wore him, if I put him in a stroller, if I held him, if I put him in the swing, no matter what I did. Literally.

People who have never had a colicky baby really can't even begin to imagine the mental game this is. It's not just a baby that cries. It is a baby that screams with blood-curdling volume, that makes your soul shatter. You are this baby's mother. They're supposed to know you. To calm with your voice, to snuggle into that crook in your arm.

And there you are, snuggling your baby and they're screaming. Screaming like you are murdering them with your touch.

I heard the words "postpartum depression" thrown out a lot. I really don't believe I had/have that. Because the days that my son had that were good, the moments when he smiled for the first time, when he rolled over the first time, I loved him enough that I could cry. I felt bonded to my child from the moment I met him. However, when your ears are ringing for the few hours a day he isn't screaming, it is literal torture. I did have angry thoughts. I never wanted to harm him (AND I NEVER DID) but I would pray and pray that he would stop screaming. There were plenty of times I had to lay him in his crib and go in the car (the only place I couldn't hear him) and cry my eyes out. I would bring the monitor and put it on mute.

The guilt, that I did something to cause this was unbelievable.  We had a few hospitalizations, hernias and failure to thrive, and we had an enormous amount of tests done. Watching them, poke, draw blood, give shots, and sedate my little baby was so difficult.  I then felt guilty that whatever I did was causing him to need all this testing.

On top of all this, he didn't sleep.  Hubs and I slept in shifts.  One of us would sleep in bed, while the other held Bear in the living room.  He would wake every 30 minutes, wincing, writhing in pain, screaming.  We would pat him, rock him, bounce him and walk with him.  Then after 5 hours we would switch. 

Finally around 5 months the screaming improved.  We finally stopped giving him the formula the doctors demanded he needed and the nighttime sleep improved.  We followed Ferber's recommendation for amount of sleep and his nighttime sleep improved.  He would wake about every 1-3 hours. 

Around 8 months the screaming had subsided.  He is still easily frustrated and very demanding, but better.  He has bad days however they're few and far apart.  He still has testing, undergoes a sedated lumbar puncture, had therapy, follow up appointments, and we finally get a new medicine.

The first night he was given it, he slept in 4 hour increments.  The next week, woke 1 time all night.
Heaven in a bottle.  At the end of the first month we ran out before we could refill it, and he was back up every hour.  They can pry this medicine out of my cold dead hands.  I will never give it up.

They still don't know what's going on with Bear.  He will have another MRI in a few months.  His motor skills are severely delayed.  However, cognitively he is all there.  He laughs, he yells, he blows raspberries.  He has favorite toys, he has toys he's afraid of. 

But most importantly, he seems happy.  He has this adorable smile, with a humongous dimple in his right cheek, and this silly laugh.  It literally melts my heart to hear it.

The guilt is still there, though I'm slowly climbing out of it.  My biggest regret is not advocating for my son's needs effectively.  I would request different nurses, different tests, different procedures.  But that's in the past, and I cannot change it.  I can simply learn from it.  That doesn't mean my anger over the situation has resolved, it simply means my anger with myself is resolving.

So instead, I focus on the future.  Bear has a Guinness Book of Records attempt in his baby book and it's just the start.

My little guy is going to move mountains.  Just you wait and see.