The Humility of a Rare Disease Caregiver

I define myself as an advocate and a caregiver. Before I was introduced to the rare disease world I went to school hoping to be a social worker, but was too empathetic and had a hard time not bringing the feelings of work home with me. Then as my maternal grandparents were aging I spent a good deal of time helping my parents and uncle take care of them. All of this, I feel, prepared me in many ways to be the caregiver I am today and the advocate I have become in the rare disease world.

There was also a time before all this when I thought I was a big deal. I thought because I got into a good school, did well, had friends and a boyfriend, etc... that I had it all together. Pride was a sin that I lived with day in and day out for a good part of my life. But I tell you one thing that will bring you back down to earth pretty quickly is having kids - and having children with significant medical needs can do it even quicker.

When others hear of my story or see how I interact with my children, even to this day one word that is often used to describe me is patience. And I would agree, I am a very patient person, especially with those with extra needs. A lot of that has come because of the perspective that has come from being in the rare disease world. There are big things that I need to worry about at times - and when I need to work on those things I put all my energy there. But for the most part day to day things I do not get very worked up. You know the saying "don't cry over spilled milk" - well in our lives, when there are literal life and death battles there is a lot that is more like spilled milk where I have just learned to be patient, clean it up and move on.

Last weekend though....last weekend was tough on my patience. And it me hard. I had a dear friend tell me that I was the mom she wanted to be as her kids grew up - they too also face challenges. I took this comment in stride and reminded her of the grace I see in her now and wondered I, at those stages showed back then. Within an hour all heck had broken loose in our home. It is a situation that has been going on for months and I have been patient. But this night was literally the straw that broke this mama's back. I lost it on my kid - I yelled at him in ways I would not yell at my worst enemy. I said things in anger I would never say to another human. I had broken....

In the moments that followed I felt like the one thing that I cannot stand in people - I felt like a hypocrite. Here, I am this person that everyone thinks is patient and I had just lost it. I went further to think that I am one of those Christians - one who is patient and loving in front of others and then does this to someone close to her that she loves in the privacy of our own home. While my son and I worked things out, I continued to beat myself up long after the words had been said, long after the apologies had been accepted. I could not forgive myself.

Luckily on Monday afternoon I had a therapy session. My therapist reminded me of a few things. One was that, as a Christian we all fall short, we all have sin, we all stumble and fall and that is why we have a savior. Jesus died on this cross and He has forgiven us and that is enough. And I remembered what a former pastor's wife once told me - is what I did really bad enough that I am saying Jesus dying on the cross was not enough to cover that sin? The other things applies to us all - wherever you are in your faith. No matter how you describe yourself or how others describe you - none of the characteristics are absolutes. I am a patient person - that is my demeanor, but given enough pressure, I too break - I am human. And I need to give myself permission to do that and not put more pressure on myself for breaking when I do.

Being a parent is hard. Being a caregiver is hard. Trying to balance all that life throws at you is hard. Be careful not to make your life harder than it needs to be by being hard on yourself. You deserve grace.