When we started the journey in this world of medically fragile, I had on rose colored glasses. There were days that no matter what was thrown at me, I felt like I could take on the world. Now we are over 3.5 years in to this journey, and I have care taker fatigue. The emotional toll it is taken on me can be seen in the wrinkles on my face, the gray hairs that have popped up on my head, and the bags under my eyes. Friends and family want to offer advice and make it better. But sometimes in the attempt to make things better, it actually just makes my heart break a bit more. It creates more isolation and divide between the world and my family. It’s well intentioned, but it doesn’t always help.
People say, “Take care of you,”
“Do something for yourself each month”.
“Have a spa day or massage every month”
When do I find the time? Between appointments, therapy, calling insurance providers, dealing with the state for benefits and insurance, managing his pharmacy needs, and then treating the day to day needs of the disease – when do I have time for a massage each month or a spa day? Where do I even find the money for luxuries like these? When I left my job, I let go of more than 60% of our income. I’m not complaining because it was needed for our family. However, there isn’t money to do the things we once did, and things like a massage once a month are a luxury I cannot afford. I am his eyes, ears, his interpreter, his advocate, his nutritionist, doctor, nurse and mommy. I want to take care of myself – but I don’t have the time to do it. I find ways to care for myself by running, reading, or writing. I do care for myself, but going to a spa just isn’t going to happen. While most special needs parents recognize the need to care for themselves, it doesn’t change the fact that momentary breaks won’t change their reality.
“But you need to celebrate the milestones he does reach.”
“you need to be grateful for what he can do”
I do. I know I need to be grateful. Trust me I’m on a pipeline with God daily talking to him about all the great blessings we have received with my son’s disease. Yet, the constant day to day reminder of the difference, of how hard he has it, how much he needs to fight to simply attempt to blend in, can really do a number on your psyche. I can celebrate it all. I can be positive and be his cheerleader. It does not change the fact that day in and day out we are fighting an uphill battle. There is nothing comfortable about this journey, and we do celebrate all the great progress. It also does not mean that climbing the mountain day in and day out doesn’t make us all very fatigued – including him. He needs a lot of down time – more than most children. He needs rest and down time to let his body do what it should do to grow. Even growth is hard for him. We are champions for him, but we know his battle is ongoing and will never relent.
“Crying is normal for a child his age”
“His frustration is totally normal”
“He’s just acting his age”
I wish this was normal. Trust me, I get it. He definitely has normal moments where he’s ticked at me for not giving him the toy he wants in that moment. Or he doesn’t like where I’m sitting and demands I move. There are many aspects that are VERY NORMAL. Melt downs because he’s overstimulated due to his Sensory Processing Disorder is not a normal behavior. Melt downs because he doesn’t like the way his feeding tube feels are not normal. Melting down because he doesn’t want food to touch his hand, doesn’t want water, sand or basically anything on his fingers – is not normal. Having to pull him away from activities he loves because his heart is beating so fast – and his breathing is so labored – is not normal. Being at typical play dates and worrying that he might need to go to the ER for labored breathing – is not normal. Yes, he looks normal. But his body is missing pieces, his brain is misfiring daily and creating motor processing delays in every area of development. Watching him feel frustrated because he can’t communicate properly because he knows what he wants to say but his mouth won’t respond due to Apraxia of speech – is not normal.
“But he doesn’t look sick”
“He looks so normal”
It’s probably the strangest response we get from friends and family. Often I want to respond “What does sick look like?” or “why would he not look normal”. Chronic illness and disease is not always visible. It is often INVISIBLE. Most people would have no idea that my son is missing pieces of his body, has a broken heart, or that his brain is not formed correctly. It’s on the inside of him. Illness is often NOT visible. Most people and children that are medically fragile do not appear sick. They will have the same physical appearance as the next person. Illness within does not mean they are not sick.
I know every person is well intentioned. It’s hard to see a child that is dealing with chronic illness. It is hard to manage the pain that it creates within the soul. Trust me. I feel it daily. It’s uncomfortable watching a child struggle. Please try to be sympathetic without minimizing what the parent and child are going through each day. You do not have to fix this situation. In fact, you can’t fix the situation. So stand within that discomfort for a moment, and realize the child and parent are feeling that every day. It’s OK! All you have to do is be there, lend a hand and an ear. But please try to remember this world is not normal. Many of the parents are at their financial limits and maxed emotionally and the things you say will not help them actually feel better. Try not to fix it. Just try to be there. Let the parent vent. Help them clean their home. Show them, while you may not understand, you are at least trying to understand. It’s OK not to understand. If you don’t live it – you won’t understand. It’s ok not to know what to say. It’s ok to just be quiet and be supportive with a cup of coffee, warm meal or a hug.