Blog · October 10, 2013

What Do I Do All Day?

I have to be honest. I am tired. I read an article this morning from Matt Walsh defending Stay-at-home-moms and it hit home so hard it really made me think. We do get the short end of the stick. We do the most important work, we take care of the future generation, and somehow we’re envisioned as lazy. I don’t get it.

Nicky and Connor in 2005. Nicky was 9, Connor 2

Nicky and Connor in 2005. Nicky was 8, Connor 1.5

What do I do all day? Let me count the ways.

1. I am a Taxi-Driver. I drop off and pick up BOTH of my children to and from school. For Connor, this is every single day. For Nicky twice a week, and this include assembling and disassembling his power-chair. We do not have a van, so the chair breaks down in ten pieces, one piece is over 70lb which I have to lift in the trunk.
My Taxi-Driver duties include taking Nicky to the Children Hospital every Wednesday for his Occupational Therapy on his hand and every other Friday for Iron/Blood Infusions. CHLA is a 90 minute drive one way ‘without traffic‘, with traffic…. take your pick. Yesterday it took us 3 hours to drive back due to flooding on the I-5. Of course it includes the power-chair assembly.
For Connor, I take him to his Karate self-defense classes on Fridays and swimming on Saturday mornings.
Let’s not forget I am the errand girl. I do all the grocery shopping, I pick up all the prescriptions, if the cars need an oil change or if we need to mail a package, I am the one that does it.

2. I am a Nurse. Well, with EB, this goes without saying. Every night we change bandages either on one arm or both legs. This is every single night. It does not matter if either one of us is tired or wiped out by the day’s events, bandages have to be changed. Period. On a good day it could take about an hour, bad days, close to three. Why at night you may ask? Because they are so physically draining on Nicky. After we’re done all he wants to do is sleep. But Nicky has wounds in other places, the trickiest place being his buttocks. Because he wears a diaper at night they get soiled, so they have to be changed every morning. Nicky cannot really walk at the moment, so I have to push him everywhere on his computer chair. If he needs anything, water, medicine, a blanket or anything to eat, we have to get it for him. He does not have enough strength to even open the fridge.

3.  I am a Mother. I love, I cuddle, I talk, I care. I want to know everything that is going on in my children’s lives. If they are bullied, I write letters to the school and meet with the principal (it happened to both). I love engaging in conversations with them and want to know how they feel about things. I don’t dismiss their worries or discount their fears. I encourage independence and make sure everyday they hear me say that I love them.

4. I am a Wife. I make sure my husband is fed in every way. With love, with food, with conversation, with care. He had 2 strokes 4 years ago and he amazes me every day on his resolve to improve his mobility. He still works and he’s now trying to ‘pay it forward’ by teaching his colleagues what he knows. I take him to get a deep massage every month on the arm that is debilitated. I take him to get braces or his braces fixed for his leg so he can walk. He wears a brace on his hand that he can’t use to try to improve how it rests. He went from being wheelchair bound to be able to drive, from not being able to walk at all to get enough strength on his knee to be able to stand without any braces and even take a few steps. I will support him in every way possible.

5. I am a Housewife. Yes! Surprise. I still cook, clean, do laundry, organize, take out the trash and even build things. I don’t do everything I want to do. My house needs help because my time is spent taking care of my kids. I don’t have nannies, I don’t have maids. Connor never had a babysitter, ever. Please excuse my breaks as I play Chefville or peruse Facebook. I need to take my mind off things or I might go mad.

Connor & Nicky - 2013. Connor just turned 10, Nicky is 16.5

Connor & Nicky – 2013. Connor just turned 10, Nicky is 16.5

Some asked the following questions which I will try to answer:

How were you able to work and go to school in the past? Why did you get a degree?

That was tricky. I could only work or go to school between 9am and 2pm, Monday through Friday and anytime Saturday. I specifically waited until Connor started kindergarten to do that just so I could work or attend school while the kids were at school. Because of this, I was limited on what kind of classes I could take. Some semesters I was able to take 3 classes, some only 1. I was working part-time at best, anywhere between 10-20 hours a week. I ended up quitting my job after my husband had his strokes after I had a near-nervous breakdown episode.
My degree is important to me for many reasons… but mainly because I will never be able to work full time due to Nicky’s illness, so I need to be able to have ‘credentials’ to be paid a reasonable amount for part-time work. Sometime next year I will start looking for something to do, I have a few things I am considering already and I hope they pan out.

Why did you move to the US when your family that could help you was in Italy?

My move to the US was not a calculated move, I did not wake up one morning thinking ‘I am moving to the US’. I did not escape anything as some have speculated, nor I even feel the US is better than Italy. Crazy, right? Why am I here? I’ve wondered that myself. The truth is, sometime in life things evolve and happen organically. I am here for a reason, of that I am sure. It’s that old “one thing led to another” story.  A little visit turned into me going to school, then I met my ex-husband and then we got married… you get the drift. I never went back. Once Nicky was born I went to Italy for my parent’s help and coming back, knowing I had zero help was a knife in my heart, knowing HOW MUCH help I would have had in Italy. It still kills me thinking about it.  One would think that between my ex-husband family or my husband family and my other family that I have in the US someone, anyone really, would be able to help, but zero is the number. The only person that ever helped me is my husband and a lot of his help vanished after his strokes. I don’t know what I would do without his emotional support though, he is my rock. I adore this man. I am also very thankful that my ex-husband, Nicky’s dad, helps as much as he does. He has helped us financially and even physically. I challenge anyone to have such a caring ex-husband. Despite it all I count my blessings.

But you know what keeps me up at night? While Connor is getting easier to take care of, Nicky is getting harder. He is worse not because his wounds per se are worse, but because his skin is so much more fragile. Moving him from his bed to his computer is a chore, taking him to school or the hospital is an ordeal. He has to be on pain meds all the time and all kinds of other medicines. You know your house is a pharmacy when when the pharmacist seems me she recognizes me immediately and asks:”Are you picking up for your son or your husband?”.

So, next time you might be tempted in wondering what a Stay-at-home mom does all day, especially if she is a special need mom… wonder instead if she needs HELP. I am willing to bet she does. And as far as being lazy… NO MOM is lazy! Let’s give that notion a rest!

Love and Light,