“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.

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.

Bear - The Beginning

In honor of my first Mother's Day coming up, I am sharing the story of my son's entry into the world and the events that shortly followed.

I was induced just after 39 weeks because of elevated blood pressure and uric acid.  And because he was estimated to be large.
My induction was successful however I had a great deal of difficult pushing his shoulders out.  He had severe shoulder dystocia and was extremely bruised and stiff after birth.  He couldn't figure breastfeeding out, was super tired, and never cried.  The nurse kept giving him Tylenol because he was probably in pain.  I am still angry with my delivery experience for this.  For not advocating for my son that he be examined IMMEDIATELY.  I waited.  I had a nurse tell me "he just wasn't hungry".  I had another nurse tell me "It's normal for babies not to cry".  Then the 2nd night he came undone, he screamed every 45 minutes, would take about 1-2mL of formula, pass out and repeat.  We begged for help and none came, instead we were told we were "paranoid first time parents".

At 11AM the next day a pediatrician came to take Bear for his discharge exam.  She came back noting the nursery had gotten him to take 2/3 of an oz of formula, which he then immediately vomited all over her.  She said he had red flags, and was extremely stiff, he was seizing and needed to go the NICU before he stopped breathing.  I held him in the nursery till the NICU staff came.  The loaded him in an isolette on a gurney, wheeled him in my room to say good-bye. 

It was shocking. 

It the course of an hour I went from about to leave with my newborn to go home, to leaving with an empty carseat praying my son kept breathing long enough to get to the NICU.  Hubs and I headed home, it was on the way to the 2nd hospital, to get clothes, a snack, and anything else we would need.

We then headed to the NICU where we were informed we would not be allowed to see Bear.  We waited about 2 hours before we were allowed in.  He as asleep in an isolette, with the nurse who transported him watching over him.  He had an IV in his head and when she handed him over to me it took everything in my body not to break down and cry.