Mom Feelings

How it feels to be a mom to a child with special needs

I was about to title this post "How it feels to be Tobias's mom", but the only sentence that would follow is that it has been absolutely amazing!!!

A few weeks ago, a mom who also has a son with clubbed feet and an underdeveloped hand, asked if I could do a post about my feelings towards it all. My emotions, how I coped, if I was frustrated, etc.  So here it goes!

First, I should start from the beginning.  When I was 20 weeks pregnant with Tobias, I had my anatomy scan done.  The one where they make sure everything is on track with the growing fetus.  It was my first time being pregnant and I was naive and in complete bliss of having an amazing pregnancy.  It was during that ultrasound where we found out about his small, left hand and clubbed feet.  The first emotions I felt were terrified.  I started tearing up as I laid on the table. The ultrasound tech was trying to reassure me everything would be ok.  I remember walking as quickly as possible to my car, because it was getting harder to hold back my tears.  

By the time we had driven home, I had calmed down.  But needless to say, still scared of the unknown with our baby boy.  Was he going to be able to walk?  Would he be able to play sports? Why me? Why my baby?  I was so frustrated that our baby was going to have to suffer and be different.  These were all emotions I couldn't shake because it was all so new to me.  

 A couple hours went by and Adrian and I decided to spend the rest of the evening doing some research.  We quickly saw that his clubbed feet seemed to be something that is common and can be treated. That definitely helped ease my nerves.  But what about the hand?

We had countless ultrasounds with a high risk doctor after that 20 week appointment.  They looked over and over at the hand but couldn't quite understand what was wrong.  Two things were sure. 1: it was smaller than the right. And 2: it did have 5 bones (That was amazing news!!!). We knew before we had Tobias, that the hand might be webbed, but we couldn't be sure.  Needless to say, these findings brought about a bunch of worries for me. But thankfully those were often pushed aside by the overwhelming joy that I was even pregnant with our first baby. I think it helped that he wasn't physically in front of me yet.  So there were times I would forget that he had complications. 

Then, the day came where we delivered Tobias. Our precious baby boy.  I have longer blog posts about my delivery and his NICU journey, so I'll quickly touch on my emotions during that time.  I honestly have such a hard time explaining my emotions when he was born.  I was terrified when I delivered him because within 30 seconds an entire NICU team was surrounding him.  I remember laying on the bed and hearing the nurses saying "does she know about his hand and feet?".  Well, I could truly have cared less about any limb differences he had in that moment.  I just wanted to make sure my baby was alive and breathing!

The entire NICU journey was so emotional.  I was scared for him, but at the same time in pure bliss that I had just had a baby.  A son I had always prayed for and felt so lucky to have in front of me.  

Tobias is now 2 so we have been to many doctor appointments.  Thankfully a lot of the news we get is good.  At least, that is how I choose to view all the information we get.  Many people ask me how I do it.  How I can be so positive with everything going on with him.  And I am not going to lie, there are days I cry.  There are days I worry and think what if he can't do this or that.  Just a month ago, Tobias was playing with one of his new toys he had got from his Aunt Kayla.  It was a ball pit he was obsessed with.  I watched as he picked up the balls and threw them in the little basketball hoop.  He was trying to use his left hand to pick up a ball and I immediately got sad when he was struggling.  He tried and tried but couldn't pick up the ball with his left hand.  Not 10 minutes had gone by, when he learned to use his body to help his left hand hold the ball.  I was so happy he had adapted all on his own.  Then shortly after he gripped the ball and picked it up with his left hand.  He did it!  I was excited for him, but immediately felt so guilty I had every doubted him!  

This happens every time I worry he won't be able to do something.  I was scared he wouldn't walk.  Now he runs circles around me!  I was worried he wouldn't be able to pick up things with his left hand.  Now, he loves trying to grab things with it!  What I am saying is, I have always worried a little and he proves me wrong every time.  Will my worrying go away? Probably not. lol. But I look forward to him overcoming any obstacle I fear is too large for him to tackle.  He truly makes me so proud!

Another thing I want to touch on is bullying.  As his mom, the possibility of him being bullied is something I worry about everyday.  I am afraid kids will make fun of him.  I am scared it will happen at school when I won't be there to hug him and reassure him that he is perfect.  But one thing I am trying to work on is not dwelling about something that hasn't happened yet.  For all I know he won't be bullied.  Maybe he'll be the cool kid who others admire, just as I do.  Only time will tell.

But ultimatly Adrian and I have always said "It could be worse".  And that's not our way of throwing in the towel, but rather our way of thanking god that he is not more severe than he turned out to be.  What helps me cope is just remembering that he is truly amazing!! Sorry if I have said it a few times, but I truly am so so so proud of Tobias.  I joke that his little brother Zeke has a lot to live up to. lol 

To sum everything up, it was hard at first.  REALLY HARD.  But after watching him grow and develop everyday, he continues to amaze me.  He shows me that he is going to be amazing at anything he puts his mind to!