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.

Short-comings in health care

5 long months ago, I started documenting a journey that I referred to as "The What's Eating Jacob" saga. Nobody at the time could predict that 5 months later, we're still playing the What's Eating Jacob game. Here's a brief recap for those that are new to my story:

In November 2015, I had my Cook Entuit Gastrostomy Tube (GTube) inserted into my stomach. In English now, that's a fancy way of saying my "permanent" feeding tube. At this point, I had lived with a Covidien NG Tube (a tube from your nose to stomach) and the frequent, heavy nosebleeds that I was having with it for about 8 months, as well as a persistent sore where the tubing touched my nose. Two days after having my GTube inserted, I broke out in a widespread rash that the doctors believed to possibly be chicken pox. I spent 2 weeks in the hospital on anti-virals until they determined that I didn't have chicken pox and almost jokingly tabled "perhaps it's an allergy to the tube materials". Atarax (anti-histamine) helped to take away the rash, itch and pain. Until even that stopped working and you could see that wherever I taped the line to my skin, had blistered so badly that it ate a trough through my skin and I had to literally gently pull the line out of the mess. Thankfully, there's an "easy" fix for that: avoid touching the tube to the skin. I used DuoDerm, a protective sticky that forms like a second-skin, to prevent the tube from touching me, and it was no longer a problem. Unfortunately, I still had a lot of soreness and inflammation around where the tube came out of me that wasn't so easy to fix. I had to wait until the beginning of January to be able to switch the tube for a different one because you are not supposed to do any tube changes until the hole into my stomach heals - 6 weeks post-surgery.

By the time January came, I was really struggling with the pain from the tube and was really looking forward to replacing it with Halyard Health's MicKey Low Profile Gastrostomy Button. It's so small that there is no way to tell that I have it and the best part was not having a tube hanging off of me, and the massive amount of tape used to secure it. I thought that this would be the end of the What's Eating Jacob saga. I looked forward to that a lot.

But the saga didn't end. I stayed on the Atarax medication for a few weeks after I had my MicKey placed just to deal with the leftover rash. I then stopped it. Big mistake. A few days after stopping the medication, I started to break out in an itchy rash. It turned out this time that it was an infection. The doctor gave me more Atarax for the itch and antibiotics to deal with the infection. 2 weeks later I was again off the Atarax and had finished the antibiotics. Guess what came back? No, it wasn't the cat, it was the rash. Worse.Than.Ever. And back we went to get some more advice. This time there was no infection present, but Atarax was clearly helping to keep the rash response down to a minimum. Then it started to lose it's effectiveness. I started having problems with granulation tissue forming, and having breakthrough rashes come out of nowhere. Clearly, something was going on here. Our hospital's GTube team said that my mom was doing everything perfectly for managing what was going on, but things just kept getting worse. I think we were all feeling pretty stuck in trying to come up with solutions.

About two weeks ago, things reached a critical point in this journey. I started to have major leakage of stomach acid from the GTube site. So much that even with sponge dressings, I'd quickly soak through my shirt/pants, etc. With the help of our GTube team, we ruled out a problem with the tube itself as a potential cause. Again, we were feeling pretty stuck on figuring this out.

Fast forward to yesterday, the GTube area had started seeping blood for 4 days at this point, and it was majorly painful. I couldn't sleep more than 3 hours without waking up screaming in pain and screaming from the itch. There was clearly something very wrong.

Yesterday I met with Dermatology and the GTube team. Dermatology had referred me to an allergist for patch testing back in January, and the allergist said that he wouldn't see me until the dermatologist sent him a list of ingredients that are used in the medical products that were the likely offenders. So my dermatologist went on a research mission. You would think that a doctor could access this information easily, right? At least I would assume that as a medical provider (or even a medical consumer) you could easily access a product ingredient list. The answer is quite shocking: this information is often hard to come by and a strictly guarded secret.

Imagine this, a medication you take comes in three different brands, each with a slightly different formula. You use each medication for a one month time period, one after the other, and note a similar reaction to all of them. You would want to know what ingredient was in common to all of these products so that you could find out what was likely causing the reaction so you could avoid it in the future, right?

Well, for medications they do list all the ingredients, but for medical products such as feeding tubes, or dressings, the answer isn't so easily found. My doctor attempted to contact these providers and found that they wouldn't give up their secretly guarded information because other people could copy their patent.

Whoa, wait a minute here. You mean to tell me that I, the consumer who pays (or at least my mom pays) mega money on medical supplies doesn't have the right to know ALL of the ingredients that are used in my own medical supplies? I understand that all medical products have to be safety checked and approved, but don't medical companies have an obligation to disclose this information when it causes an adverse effect? I can't imagine that I'm the only one in the world that has had such a reaction.

I sit here now, in pain, with tears forming at my eyes with no immediate end to this saga in sight. The dermatologist is going to try to push us into an allergist ASAP for patch testing. There is a different tube available that does not contain silicone, but at $500 a shot they want to make sure I'm not allergic to the materials of it first (I'm thankful for that!!). They have scheduled me for my next set of scopes and biopsies on May 17 which will tell them not only how the Crohn's treatment is going, but will allow them to have a good look at what's going on around the GTube site on the inside of the stomach. There is some speculation that whatever is causing the reaction on the surface is likely going to be causing some problems on the inside too. What I do know is that we could have had a direction to go to find answers earlier if we could have found out what was in my medical supplies, and it might have helped me to avoid so much pain and tears.

*I was going to place photos for a clear picture of what I'm talking about, but have decided that no one wants to see that. Essentially, I have an orange-sized circular patch of raw, bleeding, inflammed skin surrounding the tube, and a blister-type rash spreading on the edges. It pretty much looks like a pretty bad case of road rash. I have stomach acid pouring over it constantly so it burns no matter if I have cream on it or not. It's extremely painful*

The Ultimate Deception

It almost sounds like I'm writing a spy novel from the title. But sadly, this is a work of non-fiction. I've been thinking a lot lately about appearances, and how we as a society are quick to jump to conclusions about people based upon what we are seeing. Appearances can be deceiving and seeing isn't always believing.

I am disabled. I have an incurable, difficult to treat disease - Crohn's Disease - that has caused a lot of interference in my life. When I was first diagnosed, June 2012, you would likely look at me and have said "Well there's a skinny kid, he needs to eat more". I was small, but for good reason, I wasn't absorbing my nutrients correctly so I wasn't keeping up with my friends in the growth department. And here I thought it was just because I was the "baby" of the class having a birthday in the middle of December. Oh how I wish that was the case.  When my disease started, while the pictures show me smiling, the reality was that there was massive damage and heavy bleeding going on inside of me. I was so sick that my body was a toxic wasteland, but the only thing you would see is that I was thin.

Then I was diagnosed, put on steroids (the dreaded pred) and people started to treat me differently as my weight nearly tripled. I've wrote before about how I was bullied at school, called the "fat lady", and made to feel really bad about how I looked. But I would also get a lot of stares and "double takes" when I was out and about, people looking at me and making comments about how kids these days ate too much junk. They didn't know that at that time, I was fighting to keep my bowel. That the steroids were the only thing keeping me from bleeding to death. Or that during this time I would have to wake up and take anywhere between 12-18 pills, and that's just to start the day. I didn't look "sick" to a lot of people, but my doctor's were really worried that my colon could bust apart at any time, so the reality was a completely different story.

February 7, 2013 I had a colectomy, the complete removal of my colon, and an ileostomy was performed (taking the last part of the small intestine and tunneling it through the stomach to create a way of eliminating wastes). I finally had something that changed my appearance, my so-called proof that I was indeed sick. Yet it's still something that at the time, I kept hidden from public view because nobody wants to see poop. It changed the way that I could dress though, as there are few trendy clothes that fit right and worked to conceal the bag. Fashion designers don't make cool clothes just for people with an ostomy. But I found that pants that buttoned up or with zippers were just out of the question with my new medical fashions.

Since the time of my colectomy, I have used a wheelchair at times just so that I could enjoy some events that otherwise I wouldn't have the physical energy to do. Such as going to the fair. What I really noticed is that when I was in the chair, people would move out of the way, hold doors for me, and generally treat me differently, but when I got up to go on a ride, I heard people saying "can't be too disabled" and other hurtful comments. There are plenty of people who are capable of walking small distances at a time but don't have the physical ability to be on their feet for hours. My wheelchair wasn't used just because I was lazy, it was used so that I could once again take part in life.

Last February, I could no longer tolerate solid food, so the doctor put me on complete bowel rest and I was fed through an NG tube running from my nose to stomach. I finally really looked the part of being sick with this tube taped to my face. People stared, they asked

questions, they offered to give up their seat on the train at rush-hour so I could have a place to rest. They treated me a whole lot differently and it was only the tube that caused this change. People often let us go in front of them in a line-up. The train gave us a discount because they could visibly identify me as a "person with special needs". At concerts, the staff of the venue would ask us if there was anything we needed to make our experience more enjoyable. People could see that I fit their belief of what a sick person should look like and treated me different.

Now the thing that really bothers me is when people who have seen me struggle say to me "You're looking great, you must be feeling so much better". Whoa. Huh? I've gained a ton of weight (leading to my doctors saying it was a medical emergency), I no longer have tubes taped to my face. All of that is true, but since when is that an indicator of actually feeling better? Why is it that the only time strangers go out of their way to be helpful, is when I'm visibly sick? For the past year and a half, I've lived with paralyzing nausea and daily vomiting. Unfortunately, unless I make a really big mess in front of someone, they're not going to be able to see this. Unless the tears of pain that I try so hard to hide, are falling down my cheeks you can't see the fact that my joints hurt so bad that they make me want to scream. Just because I'm trying to be happy, planting a smile on my face, or able to laugh at a joke, doesn't mean that I'm not sick or that I'm feeling better. Yet, I've met some medical professionals who judge how sick I am based upon whether I'm smiling, laughing, talking, etc. I might look great on the outside but my insides tell a completely different story.

So instead of assuming that I must be feeling ok because I look "normal" on the outside, how about asking me how I'm doing instead? And please, always keep in mind that other people might be fighting against their own invisible demons. Kindness, patience and understanding can make this world a better place for everyone.

Taming the Dragon - Health Update

The thing about living with severe, refractory Crohn's Disease is that it's relentless. It doesn't give up because I'm tired, it doesn't go away because it's decided that I've had enough. It's like this dragon that's always sneaking around inside and starting fires. Some fires get put out but others grow and smolder. We can try to calm the dragon down, but he likes to get angry real quick and often at the worst possible times. I wish that I could just put the dragon on the time-out chair and tell him that he can't come out until he agrees to play nice. Only in a dream world.

Last week's GI appointment was better than one before, at least we agreed on my diagnosis (I do 100% have Crohn's Disease) and that we would NOT be talking about a reconnect surgery (reversing my ostomy by building a JPouch inside me to collect waste), at least not anytime in the next several, several years. There was more inflammation found on this set but at least it's not back to the epic level of disaster that it used to look like inside me. Still not great and not the level of healing that they were hoping to have seen.

We've entered a new phase of my Crohn's journey. The doctors have now moved to symptoms management. What does that even mean? It means that there isn't much more they can medically do to get me into remission, so we're going to try to get some of my symptoms under control. I'm not sure how I feel about this statement yet. I want to feel better, which means that we have to manage my symptoms but I want what's causing my symptoms to go away in the first place. I know that we aren't going to be able to cure this for me right now, there is no cure for Inflammatory Bowel Diseases, but I want to go into a period of remission like I see my other IBD friends having. I'm realistic though and looking at the reality of not having achieved remission in 3.5yrs, I know it's not likely to come along anytime soon. But I still dream of it, hope of it, and try to imagine what it would be like. In the meantime, I do need symptom control so that I can get back some quality of life. I need to be able to get back to school, see the friends I haven't seen very much of in almost 2 years. I'm looking forward to getting some of these symptoms under control!  Hopefully we can make the dragon a bit happier.

I guess the first step of that will be later this week with Operating Room trip #14 to get my permanent feeding tube put in place.

Everything Changes - Jacob's Health Update

It was a completely unexpected call that came out of the blue and announced that it was going to change my life for a very long time. Yesterday the GTube (a feeding tube placed into the stomach) clinic called. Apparently, the doctor has re-evaluated the situation after having had the gastric scopes just done, and decided to change his mind considering that at our last appointment it was said that considering my weight gain they likely wouldn't be doing the procedure. Now here we are 2 months later and the procedure (my 14th sedated procedure in 3 years) is going to be done next week.

I'm scared. This has all seemed to happen so fast that I haven't had time to adjust my thinking yet. When I'm faced with a new situation, I like to twirl the idea around in my head a lot, it's my way of coming to terms with some pretty tough situations. I find that by taking the time to look at the situation from all sides really does help to put things in perspective and accept what's about it to happen. When I first had the idea of my colectomy brought up, I felt the same way - terrified at first but as I twirled it around, I slowly came to terms with the idea.

I'm worried that it's going to hurt, that it's going to leak, that I'll somehow pull on the tube and have it break or worse, come out all together. I'm worried about there being this hole into my stomach, even though I know that it's all going to heal around the tube.

On the flip-side, I'm looking forward to getting this NG Feeding Tube off my face. I've had a tube taped to my cheek since February, so I'm looking forward to seeing my whole face again. I know that I'm going to need long-term nutrition support for my Crohn's Disease, so I'm thankful that I won't always have to worry about changing the NG Tube, which is one of my least favorite "experiences". It's going to give me some life back because I'll be able to get a portable feeding pump, which means that when I need to be hooked to fluids or feed for the majority of the day, I won't have to worry about being attached to my dancing partner, the IV pole. I don't have to worry about missing school because I need to be hospitalized for IV nutrition (TPN). I can go on vacation or daytrips much easier.

While it is scary, it really is something that needs to happen and will hopefully go on to improve my life. Sometimes we just have to take a risk, a leap of faith, in order to get the greatest of rewards.