The People Behind the Scenes

I hear the words "super mom" quite often.  People wonder how I juggle work, Eli's bandage changes, preparing to leave for Minnesota for 4 months, the fundraising we have been doing, and basic every day stuff.  I post updates on Eli almost daily and those updates sometimes include pictures of the two of us or videos that I have taken of him or talk about appointments that I take him to.  That is what people see-mom does it all. 

But that is not the truth. Mom does not do it all.  Mom has a team of people who help her juggle it all.  That team includes FIVE home health care nurses who adore Eli and understand his condition as well as we do.  They change more diapers than we do and do more of his feedings than we do-because while mom and dad are at work-they are at home with Eli making sure he is fed, clean, happy, and his pain is under control.  Sometimes when I don't have to work, they even let me get an extra hour or two of sleep after Eli wakes up. They set up and almost always clean up after bandage changes which save us a hour out of our day.  They have seen us lose our ever-loving minds when our son is screaming, twisting his wrists or kicking his legs preventing us from bandaging him back up.  One of our nurses spends hours every week working the graveyard shift to cut bandages while the rest of us are tucked away in our bed and she was up all day with her own toddler. She used to attend to Eli's every hour or two wakings on the nights she would work but for the most part we just let him sleep in bed with us now.  Our nurses have gone to doctor appointments with me, have helped us clean up bloody vomit from our hands, sheets, and towels, and have sprayed poop out of Eli's clothes.  They sometimes drive me crazy-because I am a particular person about some things-but I know that feeling is very mutual between all of us.  Without their help and love for Eli our life would be far more difficult to manage! Part of me is dreading the thought of not having them to talk to or help me while we are in Minnesota. 

Beyond the help of our nurses, I have to toot my husband's horn.  He hates being on camera so I don't get to share pictures of him and Eli too often.  He works 40 hours a week, comes home two nights a week to do evening bandage changes with Eli (which take half the time that mine do because Eli isn't as attention seeking during bandage changes with dad nor is dad AS particular as me), and on the other days he does not have bandage changes he is remodeling our home after a 9 hour day at work.  On days like today, when mom is at work and dad is at home with no nurse he is making sure Eli is fed, takes a nap, changes his diapers and/or sits him on the potty if Eli requests it, and is still nailing down flooring in our living room to keep the remodeling project going forward. 

We have owned our house for 5 years now and have experienced one miscarriage, adoption of a kitten, one failed IVF, one successful IVF, 9 months of pregnancy, and 30 months of parenting a high needs medically fragile child in our home.  We have also experienced a septic tank back flowing into our basement, a new sewer line being improperly installed to then be reinstalled, the city storm sewer flooding our basement at least 10 times, installing four sump pump pits in our basement to keep the water out, our furnace and a/c going out on us requiring replacement, our dryer breaking numerous times requiring replacement, our dishwasher breaking on our son's birthday requiring replacement, I think I remember our microwave blowing up too which required replacement, tearing down three bedrooms, one bathroom, a living room, a dining room, a hallway, and a stairway to the studs due to having poor plastered walls, poor insulation, poor to no ventilation in areas of our home, and knob and tube wiring throughout the home, and have worked for the past 5 years to make our home safe, clean, and modern.

And when I say "we"-I really mean "he." I don't lift a finger when it comes to installing new appliances or tearing down walls or anything else that needs to be done. I just pick out what I want and usually my husband trusts my design judgment.   Most of the work done to our house has involved minimal contracting and a whole lot of labor from my husbands own hands.  He hears me complain a lot, about how much time it takes away from being involved in family activities and about the mess I can't stand living in at times or a sink full of dishes when I was working all weekend and he was home (working on the house of course-just not things that I would have done), but truthfully-I love the finished product when it is all done and I know deep down he wants to make our house as clean, organized, and safe for Eli in the end and he is just trying to do that as quick as he can.  Every year he uses his annual bonus that he works his tail off for-taking phone calls and emails on his days off and even on our vacations-to continuously improve our home. 

Beyond our home-my husband manages our bills.  After Eli was born, this was part of our life that I handed over to him.  I trust that as a banker he knows how to manage our finances and will let me know if I need to be aware of something important.  Occasionally I log into our bank account-like 10 times in the past two years. He does our own taxes every year and has been the one to set up our fundraising accounts and met with lawyers to make sure what we are doing is legal. He has been the one to get our power of attorney paperwork and living wills taken care of during this process of preparing for MN. 

And yet....he still participates in our community more than I do.  He is involved in numerous clubs and heavily involved with the Journeyman's Club where he has played a vital roll in the annual Easter Egg Hunt and Oktoberfest Parade the past several years since Eli was born. 

So if anyone deserves to be called "super" anything....it is these people.  The ones who are behind the scenes of every post about Eli and our life.  And if anyone is the worst at expressing these feelings to the people who are most deserving of this acknowledgement it is me. Sometimes, ....most of the time, I focus on what wasn't done the way I wanted it done or how I would have done things and I get agitated and snippy instead of expressing appreciation for the help and the hard work that goes into our son and our home.

We each share a piece in Eli's puzzle. Not one of us more than the other. We are a "super team" who strive our best to ensure Eli has a good quality of life that is filled with love and laughter and a feeling of safety and security.  We also keep each other balanced and without the roles that each of us play-I personally would not have the little bit of sanity that I do have or the time that I can devote to being the mother that I am.