I am often asked how I manage being a parent while being in pain or sick etc. I am asked if I would have known about my illness before being pregnant would I have decided to not be a parent?  I am doubted by many on what I am able to handle with my disease and often held back from doing the things I want to do or accomplish in life because of the doubters. My response is often that you only live once. Being sick should not hold you back from the things you truly want in life or the things in life that will make you happy. Happiness is hard to come by, often, when you are in pain and ill. So we should cherish the moments of happiness every chance we get. 

There’s a catch … Many of us have restrictions. Many of us are not supposed to have kids as it will put our health at risk. I found out about my Ehlers Danlos after having my daughter. Had I known before, I would have been told not to have children as there is a large risk of uterine rupture. I’m glad I didn’t know this. My pregnancy was already not likely and high risk. Would that have changed anything?  Absolutely not. I still would have tried to have a baby regardless. Is it the smartest choice for all of us?  Probably not. There’s already such a risk for us to get pregnant and have a healthy baby. Then you have to consider the effort it takes to take care of a baby and your physical capability to do so. Of course, there’s also knowing you have a high chance of passing on your disease. A day doesn’t go by now where I see something that makes me wonder if my daughter has my disease(s).  So many factors to consider and even beyond what your body can handle. These big life decisions don’t stop at things like pregnancy either. It goes back to the point of knowing our limits as noted in my previous posts. What do we do when we know what will make us happy but ignore the fact that it could be difficult or hurt is in the long run?  There’s no black and white answer here.  You have to know what you can manage.

Being a parent is such a huge life changing thing to happen to anyone. I always thought I would be a stay home mom with 5 kids and soak up every bit of it! It was my dream. When health issues hit me early on in college that dream became less and less of a reality. I was lucky to have just the one. Even though I cannot physically have anymore children, the dream is still there. Not so much with wanting 5 kids… but definitely more. I love every moment of being a mom. Even the tough ones. Even the times where I am sick or in too much pain to do anything. Even when they drive me up the wall!  It’s what I know makes me happy and it’s what gets me through the tough times. I wouldn’t trade it for anything and I will do whatever I can to get the opportunity to be a mom and hopefully a good one. :o) I know even in the tough times it will be worth it.

Before we get ahead of ourselves on the parenting dream let’s get back to that support system and knowing our limits.  We have to come to the realization that our chronic illness doesn’t just effect us.  Our decisions that we make do not either.  A big life decision will definitely effect those around us and those that support us because they will be the ones to be our back up when we are not well.  Our “dreams” (parenting or not) come at a cost. My wanting more children dream, definitely comes at a cost.  It’s a dream I cannot decide on without consulting my support system. My husband, my family and yes even my daughter. We discuss this possible future and what it might take and they know that they will need to be there to get us through the times where my illness gets the best of me.  We have to decide together whether this is something we can handle as a family.  I am so lucky to have this support system that wants to see my dreams become a reality and will be there to get me through it. That’s not to say the doubters still don’t believe this dream should be sought after. They will always be there and at times they may be right but when it comes to certain decisions they don’t get a say. They will be cut out of the process…or at least that’s our instinctive reaction.   When you have chronic illness you have to realize that the things you want come at a price to you and to your support system.  Do not leave them out of this decision making process.  Listen.  Do not rush into big decisions.  Take advice, listen to what they have to say, don’t get defensive or react too quickly.  Soak everything in and decide on your move.  Once you have made your choice if those doubters still are not on board, even with your support by your side, then maybe they don’t have your happiness at heart.  After all, like I said, you only live once.  If you are making practical approaches to your choices and you have support, nothing should stop you from achieving what you want.

For those that disagree….If anything in this world motivates me, it’s telling me I can’t.  Every time I am told I can’t I do everything I can to prove that I Can.  I may not always be successful but at least I try. So when my disease tells me I can’t I will always do everything I can to put it in its place.  The same goes for people.  The “Cant-ers”.  They are everywhere!  And when things don’t go as planned they will be the first to say “I told you so”.  Do not them get to you.  It’s easy to get us when we are down.  When we fail.  We are weaker than weak in our hard times.  It’s important that you move forward and try not to quit.  The sooner we give up the sooner we let our disease get the best of us.  When this happens we let it eat away at who we are.  Slowly but surely it will drain our very being, our soul out of us and with that will go the passion, the want, the drive.  The “can’ters” will take the scraps and before you know it there’s nothing left.  Be ready for the unexpected.  Be ready for the fails.  Keep going.

The unexpected will throw off our balance, and this happens very quickly in our world.  Things never seem to go as planned.  We plan something and the next thing we know we’re in the hospital or just simply not well enough to leave the house and everything goes down the drain.  The unexpected sneaks up on us. For instance my kidney disease. This fabulous condition popped up 6 months into my pregnancy and went full force after my daughter was born. I was caught off guard.  And more so because I didn’t know the full extent of what I had or what was coming my way.  I didn’t know how to deal or what to do, or how to manage. I was dealing with chronic pain and I physically could not take care of my daughter. I had a support system that got me the through the first year and a half of her life miraciously.  Even then I barely managed.  I was caught off guard… but I learned from this experience and there are times I wish it would have happened before I was pregnant because then maybe I could have been a better mom.  I certainly didn’t feel like the best mom at the time.  What it did give me was the knowledge that the time I had with her then was cherished even more.

So are you ready?  To be a parent again? To make a big dream of yours come true?  Maybe it’s going to school, or taking on a new job?  You can only prepare for what you know how to prepare for.  There will always be risk involved.  What you have to be most lenient with will be time.  Time is not our friend.  Even more so for those of us that have diseases with an average lifespan.  We want to get to the end goal as soon as possible.  We hold on to completion dates like it’s the last chance or the world will end!  Trust me, I am little miss stay on schedule at all times!  I can’t stand when plans change, especially last minute.  I always get such a hard time for this from my family.  I have a little mini nervous break down every time something goes against what I had planned.  Chronic illness has calmed me down a bit.  A veeerrryy little bit.  haha.  But I have had to realize nothing in my lifetime will come when I want it to.  I have have interruptions all the time.  My career goals will not be met when I want, and certainly my family goals will not either.  It’s already a longer process when you’re not the one able to have a child… add on illness and well… I have to tell myself things are meant to be when they are meant to be..  You have no idea how hard this is for me.  How hard it is for many of us I am sure.  It’s easy to lose patience.  We get tired of always having to wait, of our disease getting in they way of everything.  Just remember you will get there.  This is why I stress you cannot give up..or give in.  Because the timeline will be long, and hard, and exhausting.  But you can do it.  You can accomplish what you want, you can have all the happiness of the healthy (our version of muggles right? haha) No matter what happens, what anyone tells you, what your disease does to you.  YOU. CAN.

~Just a Regular Sick Girl