Saturday, July 30, 2016

8 Things I Say Instead of "It's Going To Be Alright" as a Parent to a Medically Complex Child

"Don't worry, it's going to be alright".

It's an innocent enough thing that we say that is meant to offer support and encouragement. When I was small and played with dolls, and my dolls had a boo-boo, this was something I said to them. My mother said it to me all the time when a problem came up. And when I became a mom, on the countless nights I spent awake with a sick baby, I would be whispering "It's ok" as I soothed him back to sleep.

I thought my job as a parent was to make things better. I'm supposed to be able to take any problem my child has and be able to work together to find the answer. I'm the boo-boo fixer, whether that boo-boo is physical or emotional. I'm the one who is supposed to be able to assure my child that everything is ok, that things aren't as bad as they seem, that any problem can be overcome with a bit of work. I'm supposed to be the super-mom, cape and all, that with a single wave of my magic wand, make everything good again.

This was my vision of motherhood, as I'm sure a lot of other soon-to-be-moms see themselves being like this too. For awhile, my life as a mother was a lot like this. Colds, ear infections, sore throats would come and go, and everything would be alright again. Growing pains would come and go, and then another period of "alrightness". I could easily soothe my growing boy, telling him "it's going to be alright".

But what about when you can no longer promise this? What happens when you can't honestly say that things are going to get better?

My days of motherhood are now spent playing a lot of other roles, but my primary one is still "boo-boo fixer". 9 years ago, Jacob was diagnosed with epilepsy. Then 4 years ago, he was diagnosed with severe Crohn's Disease. Since then, he's been diagnosed with anxiety, ADHD, severe psoriasis, Long QT Syndrome, eye inflammation, Ehlers-Danlos Syndrome/Joint Hypermobility Syndrome... He's in near constant pain, suffers multiple infections due to his immuno-suppression, and lives with daily vomiting and nausea. My vision of my role of motherhood, of being the one to help make it all right, has been completely changed.

I no longer tell my son that everything is going to be alright. That, in itself, is alright. Jacob knows enough about his medical situation to know that several of his problems have no cure, and can be difficult to manage. He was told that after he had his colectomy, things "would go back to normal, you'll be alright". That didn't happen. With each new medication we try that is supposed to "make things better" our hopes go up, only to come crashing down with severe side effects, or failure to help manage the disease it's supposed to treat. It is devastating to be promised improvement and then to experience this type of let-down. So we don't talk about things being alright in the future, instead we focus on the moment. The little things that we can do together to make each day a bit more manageable. Life has to go on, even when there is no magic wand. There's nothing "alright" with what Jacob lives with daily. There's nothing good that comes from watching your child suffer, other than the motivation it creates to keep fighting back.

How I see my job as a parent has completely changed. I no longer think that my job as a parent is to be able to take away his pain or to hide him from a painful reality. Don't get me wrong, I would give anything to be able to make him better, that still hasn't changed. My job though isn't to find a way though to take it all away, my job is to help my son to develop the skills to cope with the challenges that life has brought his way. My job isn't to protect him from all of the world's horrors, but to teach him to understand them so that he isn't afraid and to allow him to find his own way of making them better. My job is to help him appreciate the small things in life, to celebrate the small successes, and to focus on the moment rather than the long-term bigger picture.

I've watched my son grow in so many ways during his many medical crises, he's actually the one who is teaching me what it means to be a parent. Every time he has to have a painful procedure, and there's been many, he teaches me about bravery. Every time he has to try something new, something scary, he teaches me about courage. He's taught me what it means to be strong, to never give up on hope, to keep going no matter the size of mountain in your way. He's taught me about generosity through his fundraising and efforts to make a difference in this world. Most of all, he's taught me about life and love. I don't need to fix Jacob, he's the one who has fixed me. He's the one who's made me the best mom I could be to him, and also a better person. Things might never be the typical definition of "alright" so instead I say:

We can get through this.
You are so strong and brave, you can do it!
Just keep swimming.
Hold on.
This is just one moment, the next might be different.
Keep trying, keep hoping, keep dreaming.
Live for the moment, in the moment.
You are not alone.

Sunday, July 10, 2016

Four Years Later

Four years. Four years ago, I received a diagnosis that has changed my life. It's taught me a lot about strength, survival, and fighting on even when met with disappointment after disappointment. It's taught me hope, love, friendship, patience. Four years ago, I was diagnosed with severe Crohn's Disease.

Actually, I should correct that. Initially I was diagnosed with severe Ulcerative Colitis. See, Ulcerative Colitis (UC) and Crohn's Disease, are both forms of Inflammatory Bowel Disease (IBD) but can be very difficult to tell apart. Ulcerative Colitis, effects just the colon (large intestine), whereas Crohn's can be anywhere in the digestive tract. In my case, the inflammation that they saw when they did my colonoscopy was limited to my colon, and since I didn't have any non-intestinal symptoms of Crohn's, or granulomas present, they believed that I had Ulcerative Colitis. Unfortunately, 4 years hasn't changed the fact that it's still very difficult to tell the two diseases apart, and many are still misdiagnosed.

In 4 years, I've had so many treatments and procedures that it's overwhelming. I've been to the OR 15 times. At one point I was taking handfuls of 18-19 pills at a time. I had a colectomy (removal of the colon), donated my colon to research and gained a fancy bag out of the deal for collecting poop. Each medication brought new side effects, some of them tolerable, some of them a nightmare, but treatment after treatment failed to control my Crohn's and I kept getting sicker and sicker. Four years, and it's still often trial & error to find the right combo that works for the patient.

After 4 long years, my Crohn's is finally starting to get under control. That doesn't mean that I'm "better" though. I will live with this for the rest of my life, or until there is a cure. Remission is an awesome thing to achieve, but it can so easily take a turn the opposite way. I'm focusing on the fact that at least my Crohn's is now controlled so that we can look at what else is going on with my health (because the answer to that is A LOT). But that's a whole other post...

The main thing I want to share with others is HOPE. After my colectomy, things were looking so bad inside that at one point, the doctors were thinking I might have to have a major part of my small intestine removed. The doctors were stunned at just how bad it was. After the Remicade dramatically failed, leaving me with bleeding psoriasis all over my entire body, I did worry that we'd never find a treatment that worked. I worried about my future and what it would be like. Would I still be able to achieve my dreams of being a scientist (physics, chemistry) if I couldn't regularly get to school because of this? Would I always have to spend the majority of my time with doctors and nurses? The Stelara injections that the doctor started me on were, and still are, quite new to treating IBD, and not always effective. But taking a chance to see if it helped without major side effects was worth the risk compared to doing nothing. A year later and I'm no longer at risk (at the moment) for losing part of my small intestine! In fact, things look almost normal inside! There is HOPE. Sometimes it's the things that you're least confident in doing that will give you the results that you want. Keep trying. Failure is not failure so long as you get up and try a different approach. Keep moving forward. Change is scary, but if you don't make changes, things likely stay similar to the situation you're in now. Keep your head up, it does take time to find the right combo of treatments but when you do, it's a major accomplishment. You CAN do this.