Finding out that your child has a Chronic disease is overwhelming. Depending on your temperament, child’s age and other factors we all probably deal with tough situations differently, but these are some of the things my wife and I have experienced in having a Child with Crohn’s disease. We have found the important thing is to work hard to stay positive, and find and focus on the good in every situation. It is there!
Diagnosis – I have to think that the first year with this disease is often the hardest. For many it may be your sickest time, but also coming to grips with the fact that your child has a chronic, painful, stressful and sometimes embarrassing disease that they will have to deal with the rest of their life. When Hayden was diagnosed in 2010 he was in the 7th grade. Looking back he was probably getting sick for close to a year prior to his official diagnosis, of Crohn’s. Unfortunately, the time we had to wait to get an official diagnosis caused him to become malnourished and he ended up in the hospital for a week during Christmas. We were worried, lost, angry, confused, frustrated, and mostly wanted to take away his pain. All of these emotions are probably normal, however during this time we also learned that there were many kids there who were much worse and had no one there for them. This didn’t take away those feelings but it helped put things in perspective. We learned that we needed to make the most out of the situation God had given us and use it for good and to help others. Know that you are not alone in what you are going through and I urge you to surround yourself as much as possible with positive people.
“Well Meaning” Help – We found that everyone seemed to have an answer for how to fix Hayden. We know that everyone meant well but it was frustrating when people really didn’t know the disease very well or they knew the disease but their knowledge was that of a mild case. For us, we always thanked people for their help and just explained that the disease was complicated and not the same in every patient or case. We explained that many times we had tried the simpler things, but they didn’t work. I have no doubt that diets, homeopathy and many other therapies have worked for some people but there are so many factors to consider in each case that it’s not always that easy, especially in moderate to severe cases. Some advice is very good, and if you are in a situation to try it and it makes sense that’s great, but don’t let people make you feel bad about the treatment path you are on.
Finding the right doctor – We struggled with what hospital and what doctor to see. Unfortunately at the onset, time is of the essence and you may be stuck with just going with what is closest or what you know best. Of course you are already overwhelmed and worried and then have to deal with people telling you why they don’t like the hospital or doctor you have chosen. Don’t get me wrong, find the best doctor and Hospital that works for you, but don’t beat yourself up for your choice. It takes time and when being diagnosed you don’t always have that time. It is difficult getting so much conflicting “advice” from people and trying to do the right thing for your child. Just remember what works for one family may not work for another family. At he same time don’t be afraid to switch if it’s not working for you. We eventually changed Hayden’s doctor mainly because they just weren’t a good fit with each other. He could not relate to Hayden and his personality, but we found a doctor that ended up being a perfect fit for him and for us.
The internet Blogs and Negative People – Stay away from negative people and certain internet blogs. Of course this is my opinion but both of these only brought me down and did nothing to help the situation. Stick to reputable websites for information and yes get honest and truthful answers to your questions but get them from a source that is going to help you deal with the situation and not just give you all the doom and gloom. As we have found, there are thousands of stories from people who have turned their disease into such a positive experience. Many say they are “Thankful” for their experience, because it made them the strong, helpful, positive person that they are today.
Finding support (don’t go it alone) – When Hayden was diagnosed, it was a family from Virginia whose son had been battling Crohn’s for a few years that helped me in dealing with all aspects of this disease. They were truthful, positive and helped us to not feel alone in the feelings we were having or the experiences we were going through. Beware of large support groups. Again, this is my opinion. I just get concerned with the possibilities of the doom and gloom people that can sometimes do more of a disservice than help. In my opinion, if you want to find positive support, find people that are involved with giving back to the cause. These are often the people who have knowledge of the disease and also have a positive outlook. Of course, I understand some people deal without support from others, I just think having at least one or two people like I described can help greatly in moving forward.
School – To be honest for us the school aspect of this disease has caused great anxiety as a parent. Between 504 plans, home hospital and programs to “help” with frequent absences it can be a struggle. Also, depending on your child’s attitude about school before getting sick, getting them into school with a disease like this can be a frequent battle. My best advice here is to pick your battles. It’s hard because for us, our son had legitimate reasons for not going to school but we also knew that he could be lazy as well. For him, after home schooling for a month he was missing the social aspect of school and wanted to get back. After that he put much greater effort to get into school. Our biggest problem now is making sure that his teachers and school understand that he has a disease which has a lot more to it than what you see on the surface. Continued communication is absolutely necessary. Most teachers and administrators will “get it”, however every year we have one or two that we have to deal with. It can be frustrating, just stay on top of it. All that said I know kids with this disease who do not have a battle with school and that has a lot to do with the child’s attitude towards school before the disease and the extent of the disease itself.
Sports and Activities – Thankfully Hayden has been strong enough and mentally tough enough to participate in his sports ever since his diagnosis. Even in the midst of illness or a flare he will fight to get on the field. Unfortunately, there are times or situations where you will have to step back or miss an event or in some cases maybe even a season or so. We often wish Hayden’s never give up attitude towards school would match that of his sports and social life :-). If you do have to miss out on something don’t focus on what you can’t do but focus on what you can do! IBD suck’s, but so do a ton of other diseases, illnesses and disabilities that can be far worse and there is so much you can still do even when you are feeling bad.
Depression (Patient and Parents) – I’d have to imagine that every patient and parent experiences some level of depression in dealing with this disease. I personally think the key for parents is to not go through this alone. For me this helps immensely. As for our son, we just stay very involved in his disease but “try” not to over do our involvement. Give them space and time to vent, cry and be angry, but keep an eye for signs of depression. Depending on the person’s temperament I’m sure the likely hood for depression varies. I know for many people dealing with Chronic illnesses this can be a major hurdle for them. For many it turns out that the disease becomes their strength and what shapes them. Again, find good positive help. Don’t go it alone.
The Overbearing Parent – My son will say that this describes me for sure and I know he is right to an extent. It’s a battle for me not to ask how are you, how many times did you go to the bathroom, did you eat, do you feel sick, did you take your meds, did you sleep ok? You get the point. It has taken a lot of effort on my part to balance caring for him and not smothering him. The best I can do is “try” not to do and ask things that truly aren’t necessary and ensure he understands that when I do it is out of love. We have talked about his often and I truly think he understands that, but it still makes him mad and he lets me know! My advice here is to be conscious of it if this is you, and be willing to admit it and work to limit the questions to the things that truly matter and you need to know.
Using the disease – if Hayden is honest he will admit that even after 4 years with this disease and even after a relatively good year the last year health wise, he will pull the “sick” card on us every now and then to either try and get out of something or get something he wants. And because we know the seriousness of his Crohn’s and the potential for things to go down hill quickly, we often submit easier than we would before he had Crohn’s. As a parent you want to call him on it but because of the reality of the disease and the past experiences it’s hard to do that. Although we struggle in this area I do think it’s important to stick to your guns regardless of his disease. He will have this disease for life unless we find a cure, and I know that we may be enabling a behavior that will not work outside of his immediate family and could impact school and work in the future.
Faith – Fight – Persevere Romans 5:3-5 – For our Family our Christian Faith has been our biggest blessing when the waters are the roughest. I’d be lying if I said I haven’t had some knock down drag outs with God over the past 4 years, but in the end Hayden’s experience has caused me to grow so much as a person and in my faith. It has caused me to recognize that I am not in control and I can not take this from him. I’ve learned that I will not find absolute answers to everything and in order for me to obtain peace in the storm I must be able to trust that God is in Control and that good will come of this if we use it. I have witnessed that first hand. It’s a hard concept to accept, but suffering and pain is not only necessary but it can be good. It’s what we do with it. We can sit around and mope, whine and complain and just wait to die or we can choose to fight and use our experience to help others. In turn helping others helps us. I take comfort in knowing that this life is temporary and that if we put our focus on living like Christ instructed us to live, that this life becomes that much more joyful, even in the midst of suffering and pain.
If you as a parent or caregiver for someone dealing with IBD would like to share your experiences please send us a note. We’d love for you to use your experience to help others!