Nursing for My Child: A Beautiful Gift in a Special Needs World

Bearing the Load Together

When Paige was first diagnosed – a little 3 month old baby – the terms “24 hour nursing care” were thrown at me, and I felt as though they were weapons. I was scared of not knowing how to take care of trach dependent child, yes, but the thought of having someone else take care of her was more than I could bear. “I am Paige’s mom,” I thought, and the thought of having a nurse was almost as if it was contradicting that fact.

2 years later, I was proven wrong. 

Accepting that My Child is Different

Typically, when being extremely resistant to an idea, there is an underlying emotion that we have to identify. For me, I was expecting to have a babysitter. A babysitter for when dad and I go on a date, or for when I have to have a doctor appointment. A babysitter just helps for an hour or two, nothing more. This was my expectation. You take your child everywhere – grocery store, friend’s house, coffee shop – I expected nothing less. 

This is the emotion, the response, that kept me from acknowledging that we needed help. If I think Paige is just a typical child, then that means I only need the typical help. If I need more than that, that equals laziness, or not stepping up to my duty. I understand other mothers may feel differently about this, but I thought sharing my feelings would help for the context of this post. I am typically harder on myself than anyone else 😉

Accepting the fact that my child is medically fragile and will be dependent on a caregiver for the remainder of her life, automatically changes the perspective. Realizing that extra help is not a sign of weakness, but an acceptance of reality – that was a big step for me.

I have to say no to my pride and expectations, and accept the reality that I need help.

An Unexplainable Joy and Relief

We were told there’s only a handful of nurses that will fit perfectly with your child and family. We were told boundaries have to be in place – rules have to be made clear. Having someone in your house 60+ hours a week is a very strange thing. You can feel as though your privacy is no longer yours. Your life is being intruded upon. With the wrong nurse, that’s exactly how it feels. It’s scary to begin the search, and you have to keep your expectations really low. 

Yet, God answered our prayer. 

Today, as I write this, Paige is with one of her best friends. She’s watching Winnie the Pooh while her nurse sits by her writing notes. She feels loved, cared for, and if she has a medical emergency, Paige’s nurse doesn’t freak out – she simply takes care of her, gives her love, and comes to get John or I when necessary. 

Trusting someone with your child is huge. Trusting someone to save your child’s life – that’s a whole different thing. 

Bearing the Load Together

There is a burden all parents feel – the burden of doing what is best for their child at all times, and knowing they’ll make mistakes. A medical child, it adds a whole different element. Parents now do their best with things that typically require a nursing or doctorate degree. A “mistake” could cost the child’s life. Parents are learning medical equipment, devices, speech therapy, physical therapy – things they never imagined. Marriages have very little time, and arguments are no longer about small things but giant things, like “will doing this cause paralysis or central apnea, and is her joy more important than her physical well being?” I don’t think I have to say more. Arguments are weightier. The silence is heavier. Time to refresh and regroup – it is a blessed thing in a special needs home. 

Our nurse, she gives us relief. She bears the burden with me, with us, so that we can now do our absolute best for not only Paige, but for each other. She provides a safe haven. She provides a place so that John and I can have the time to think of each other, not just Paige.

When Paige has a severe event, we’re no longer dealing with it alone. I don’t have to explain to our nurse how I feel. She simply understands. She isn’t just Paige’s helper, she’s the Pollard’s helper. She’s the blessing I never expected, never knew I needed, and now hope I never have to do without. 

If you’re struggling with finding the right nurse, or struggling with getting coverage – keep fighting, because when you fight the battle, the reward can be bigger than you ever imagined. 

If you have a nurse but struggle with mom guilt or the fear that you’re not doing your very best – yes, always reconsider – make sure you are the first in your child’s life and there’s nothing else, besides our Creator, that is more important – but also realize there can be a second person, too. Realize doing your best does not equal doing it alone. And thank God for the best nurses out there.