To Find the Strength

How can you be so strong?

Where do you find the strength?

How have you not lost your mind by now?

If I were you, I don’t think I could do it!

These are just a few of the questions and statements I hear or I am asked on a routine basis, along with many more parents in similar situations. It’s a hard question to answer for someone who doesn’t have to live the life of a parent with a sick child.

Allow me to provide a quick explanation of our situation. (For an extended version you will soon be able to visit our personal website. Our site takes you through our story and shows you what it’s like to live with epilepsy as a family).

  • We have a seventeen-year-old boy with Aspergers.
  • We have a fifteen-year-old girl with an autoimmune disorder, which caused her to become allergic to herself.
  • We have a nine-year-old boy with a chromosomal defect, vision issues, who is severely intellectually disabled due to his type of epilepsy. As a topper to all of this, he has Lennox-Gastaut Syndrome Epilepsy.

To say that we have our hands full is the ultimate in understatements.

Our lives are led by a strict set of limitations, rules and routines. Our support system consists of the five of us. It’s utterly amazing how having a sick child can make friends and family members alike run for the hills without ever looking back. 99.8% of all our friends magically disappeared once we lost the freedom to come and go as we wish. Our family was no different and also hit the hills without looking back. We understand that people don’t understand how to deal with our situation, or know what to say about it. But what they fail to realize is that we are more than an illness, we want to talk about things that have no relation to our situation.

Yes, of course, we would love if someone, anyone would offer a helping hand, or a phone call to see how we are coping, heck even an email from time to time inquiring about how everybody’s doing would be great. But the reality is, once someone has distanced themselves from you, it’s hard to incorporate back into your life. They never know where to start. We’ve all but given up on introducing people we meet (with or without ill children) to our children. There becomes a point when you have to look out for them and their feelings of abandonment when everyone they meet walks out on them and us eventually.

Needless to say…while I would like to state my strength comes from the love and support of my friends and family as a whole, I, unfortunately, cannot. At least when it comes to extended family that is. When it comes to my family as in my mate and children…now that’s where all of my strength comes from, plus one friend who has stood by my side through thick and thin.

When you have a sick child, or in my case three children with special needs you find the strength within you, you never knew you had. You summon the courage to get out of bed daily and face another round of the unknown. You learn to slap a smile on your face, which never reaches your eyes (but luckily your children don’t know that). You pull up your big girl pants, so your children are not faced with the reality that you’re not superwoman and cannot carry the weight of the world on your shoulders.

You learn to be strong in ways you never dreamed were possible. You learn to live each day, hour, minute of your life on the wildest and scariest rollercoaster of your life. You learn to depend on no one other than those who live under your roof and try your damnedest not to become bitter towards the world. You look at your precious children and try to come to terms with the knowledge that they were designed the way they were for a reason, and it’s your job to stay strong and help them learn what that reason was.

That is how I do it every day; that is how I stay strong, how I have not had a psychotic break, a fracture in my mental state that is unrepairable. Through the love of my mate and children I have found a way to greet the world each day, bring joy to their lives because although I have more stress in my life than most people could imagine, without my children and mate I would have nothing and I would be nothing.

As a side note before I close up this post…

If you know someone who has a sick family member, try and support them any way you can. It can be as simple as bringing over a coffee for them, or giving them a quick phone call just to let them know you were thinking about them. Just because someone has a sick child or family member, doesn’t mean that they want their entire world to revolve around that illness. Take myself for example; I rarely talk about my children’s health but will brag about other aspects of their lives.

If you know someone who has a family member who is sick, if they get mad one day for something you feel is unjust, or are a bit snippy that day, don’t take offence to it. Let it roll off your back, let them have a day or two to themselves and then ask them about the incident. More often than not, you will find that they are extremely sorry they said or did something while having a bad day. In some cases, they may not have realized they did something to offend you because their head is in a million different places at once and the act was unintended. Don’t toss away a relationship because of something that may have been done without knowing it or while under stress. Wait and talk to the person…you may find that you could have lost something very precious to you when you should have been cherishing it.

Lastly, if you have a family member with a sick mate or child and you run for the hills, never asking for updates, never visiting, never reaching out any form of support to them…then you have no right to be pissy when they slowly start to block you from their lives. To become confused on why they stop calling or offering information when there is a new development, or stop asking you over for holidays is pure stupidity. I’m sorry is that sounds horrible but it’s the truth. You can’t ignore them, sitting back waiting for them to call you to tell you every detail, or expect them to remember to call on a birthday or anniversary. You don’t know the enormous amount of stress they face daily. You don’t know if, on your birthday, their child or partner was having an atrocious health day and therefore your particular day slipped their mind. While this may seem one sided, they have every right to expect help from you! You are their family; these are the times when they need you the most. When they need a shoulder to lean on or cry on, when stopping in for five-minutes to say a quick hello can make a difference to them. Try not to think of yourself. Instead try placing yourself in their shoes for a day, to see and understand what they face every day of their life. If you can’t do that, but can distance yourself from them because you don’t know how to act around them, what to say, or become offended that they missed something of importance to you, then you shouldn’t be shocked when they finally stop trying to reach out even in the smallest way, instead focusing their attention on their spouse and children.