“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 keep swimming, just keep swimming, swimming, swimming, swimming...

And eventually you'll find the other side!

Bear finally had a great doctor's visit and we don't have to go back for two years!  Yes, this was a pretty insignificant specialist in the grade of Bear's issues however one less doctor is still ONE LESS DOCTOR!

Rain again.  Rain tomorrow.  Blech.  I am so over it. 

More frugal fun though!

Our edition of our library newspaper came out today and I signed us up for two music classes and one storytime.  The other story time has it's registration closed for another month.  So I will call back and schedule then.

The good thing about being "on the in" this time is that we can go to our local library only a few minutes away and the county library.  We don't have to make the twenty minute drive to the one where did our last music class. 

Hubs and I also joined the lake.  Unfortunately we're out of county so it cost $5 more, but $30/person for the entire summer is well worth it.  It costs $4/person each time to go.  So we would have to go 8 times to make it worth it.  Bear is still free.  I don't know how much we will go but I figured having a pass would make me more likely to use it.  We're already planning on going the day after Bear's party, obviously weather permitting.  The good news is that there are two lakes and we can choose to go to either with our passes.  And Bear has been in a few pools already and LOVES the water!

Happy Mother's Day!!!

It's sunny out for once and it's a beautiful morning!

I'm so grateful to the one person in the entire world who was able to make me a Mama!

I'm also grateful to my husband.  Without him, there would be no Bear.

Love is wonderful!

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.

Bear - The NICU

We stayed in that NICU for a long 9 days.  I know mom's of preemies were in for hundreds of days are going to balk at the "long 9 days" portion.  However, we were surrounded by babies that were 1/4 the size of Bear (he was 9lbs) that were much sicker.  Bear never had a seizure that they ever saw.  He just didn't know how to eat.  Because of his low level of need, we were stuck in a corner.  We were pretty much left unattended unless some new nurse decided she needed to demand her expertise, which was highly uninformed.

We felt out of place in an area with babies that needed so much attention, mom's who couldn't even hold their babies.  In the beginning the neonatologists just kept saying this was the result of a traumatic birth.  It would improve.  Then he had microcephaly and could be severely delayed.  Then he had a brain injury.  Then it was that I did recreational drugs, despite my adamant responses  that I hadn't even been near a drug.  Then it was a genetic disorder.  Then it was an in utero infection.

Add this rollercoaster of emotion to the postpartum hormones and you would find me.  The twenty minute ride home every day I would burst into tears.  I would hand my baby back to a nurse that I just saw ignoring a crying baby for twenty minutes so she could check her email.  Then I would get home, pump in an empty nursery, see my empty carseat, and go to bed with just my husband.  I never felt more split apart.

I had an enormous amount of guilt.  As mothers our first instinct is to feel guilty.  When our child is sick, we feel guilty that we cannot make them feel better, when our child gets hurt we feel guilty that we cannot heal them and remove the sting. 

My son was in a NICU all alone and I felt guilty I couldn't be there 24 hours a day.  I believe every NICU mom feels this.  Add to that, I could have done this to my son.  I could have done something during pregnancy that damaged his brain.  Was is that warm bath?  Did I have an infection I didn't know about? Was it those 2 sips of wine I had?  What if God gave me a perfect baby and I did something selfish and ruined it?

The what if's could eat me alive, and they still could if I let them. 

Finally on day 12 of his life we were finally allowed to bring our baby home.  However, I didn't bring home a newborn, I brought home a baby who learned a schedule in the NICU, wasn't sleepy all day, and screamed nonstop.

Thankful Thursday

Sometimes, when life is this chaotic I get so caught up in the moment that I miss sight of the bigger picture.  Times like this, I need to pick out things that make my life what it is, and how thankful I really am.  So it's time for a reminder.

I am thankful for the little baby boy I get to wake up to every morning.

The baby with this crazy hair in the morning.



I am thankful for the husband I get to fall asleep with every night.

I am thankful for all the blessings God has provided to me and my family.  Hubs has a stable job, we have a roof over our head, and more love than is even imaginable.


The farmer who is willing to plow the back 2.5 acres so that we don't have to maintain it this year.

Days like this, that go into memory as some of the most beautiful nights ever.

Life.  I am so thankful that I get to be apart of this.

The not so nice side of motherhood

I'm bawling my eyes out.

I've hit my limit.  Bear woke up at 5AM for the second day in a row.  A full 3-4 hours before his waking time has been lately.  He then napped from 10-10:45AM. End.

I tried to put him down to nap for 2 hours, he refused.  No matter what I did.  And now, Hubs puts him to bed like usual (albeit an hour early at 7) and he runs to the store to get a valve for our pipe.  Of course the half bath decides to start leaking today!

Not even ten minutes later and Bear is back up screaming.  I go in, try to soothe him, and it doesn't work.  So I pick him up to rock him and he is wide awake staring at me.  I lost it.  I seriously started sobbing unbelievably, I'm just at my wits end with him today.  I haven't been able to do anything right.  No matter what, if I put him on the floor to play he wanted to be held.  If I held him he wanted down.  If I put him in the swing for a few minutes he screamed like I was murdering him.  I am so tired.

I have no idea why I can't sleep at night but last night I slept from 11-3 then was up till at least 4:30 then Bear was up at 5 and I managed to nap till 6 when Hubs had to get up.

I am thoroughly emotionally, mentally and physically exhausted today.  So, I put him in his crib where he cried, babbled and then yelled at me while I bawled my eyes out in the living room waiting for Hubs to get home.  All I want to do is take a long bath and go to bed.  BUT, the dishes need washing and a load of laundry has to get started.

However, we can't do anything until Hubs fixes the pipe in the bathroom so we can turn the water back on.

Cue more sobbing.

This is why my schedule needs fixing.  At 4:30 I went and walked around Wal-Mart.  I did have the excuse we needed cat food.  But mostly, it would occupy Bear while we waited for Hubs to get home. I literally was getting more exhausted and closer to the verge of tears with each step. I made it home to find out Hubs ended up working an extra 20 minutes late and I almost fell apart. 

I think it's about time I head to the doctor for a physical to find out why I'm so tired all the time, no matter what.

This is the unglamorous side of motherhood that people don't tell you about.

Free, Frugal Fun!

Now that Bear is 10 months old I've been trying to find new things for us to do.  Generally, we just run errands either walking around Target or the grocery store. 

However, when you're trying to stay on a budget and avoiding unneccesary purchases, this isn't the smartest thing to do.  So I decided to do some research on things we can do.

There is a local Mom's group at a church however, it runs until May and it costs $20.  So, it seems really expensive to pay $20 for 2 months.  There is another Mom's group for the area and again, it costs $20 but I'm not sure I'm ready to commit to something I have to PAY for.  I was looking for things to do that were free, in case Bear has a total meltdown or just can't handle it. 

I looked up things at our local library however they generally don't start until 2 years old.   We live in a "township" of a town.  Our mailing address is for the town, however we have a different school system and library.  Then I realized that the town, which is about 8 miles away is the county seat so their library is MUCH larger than our little one.  They have a 5 week story time for children 24 months and under.  2 of the weeks are already over, and we're going to miss one of the 3 left, but it's free and they had plenty of spots available.  So in a few minutes, Bear and I will be heading out to the library for a fun story time.

The worst part of it all, he's been sleeping great and we've all even been sleeping in.  Some days he's not even up till 8:30.  I'm forseeing that I will be prepping things the night before.

Why do babies grow up so fast??
I've been looking through pictures for his 1st Birthday and it makes me cry everytime that he's not a little baby anymore.  Where did this little baby go?