Walking the JXG Cycle
Dealing with JXG is definitely a process with its own stages. For us, it was almost the same as going through a grievance process. We grieved that the infancy of our first baby would not be as we always imagined it. We have moved throughout the Denial, Anger, Bargaining, Depression and Acceptance cycle many times and we continue working through it. The difference is that each time the first four stages become shorter and it is easier for us to identify when we are in one of these phases. For a more deep description on how we have dealt with this point, read the column “Asking for Help” under the Struggle label.
Being Patience with Yourself
Every person assimilates the reality of JXG at their own pace. There are not “too slow” or “too long” categories here. Do not force yourself to do anything you do not feel you are ready to take on yet. Listen to what your body is telling to bring you calmness and normality. Avoid paying attention to that inner voice that starts all the sentences with: “I should” or “I shouldn’t”. Baby steps are usually better as you expand your comfort zone. This is true for every JXG aspect, from sharing the news with friends and family to putting yourself in tricky situations where bad-mannered comments or actions are more likely to arise. Try to be kind with yourself and respect your internal times. The sooner you restore your emotional balance, the sooner you will be able to see new avenues to address medical concerns, family distress and daily JXG challenges.
It Gets Worse Before It Gets Better
This expression is 100% certain when applied to JXG. The first months after Santi’s diagnoses, I felt that there was not end to my anguish and I cried a lot. I would be lying if I said that today I am totally at peace with this disease, but those dark feelings come more sporadically and do not stay as long. The key here is to believe that with time life would be brighter again, even though at the present moment it does not seen possible. I can assure you that you will learn how to cope with JXG. It might take you longer than you wish, but I guarantee you it will take you less than you fear.
Staying in the Present
Due to the uncertainty that surrounds all aspects of JXG, it is crucial to learn how to live one day at a time. I know from experience that this is easier to say than to do but the only good aspect of this condition is that it can regress but itself! Even though, we do not know when that will happen, worrying about the future would not make it happen faster neither would make difficult situations easier. Every day our little JXG warrior is happy and free of painful symptoms is a gift. For a more deep description on how we have dealt with this point, read the column “A Diagnoses that Pushes all my Buttons” under the Struggle label.
Getting Support
Nobody ever prepared you to have your child afflicted by JXG. Most likely, you will try to figure this out on your own using all the copying mechanisms that were helpful to you in the past. Still, do not be surprise if they do not work, this is a very challenging condition that is affecting the thing that you most love in life. Having support from people that love you can make the journey to acceptance more bearable. Please do not underestimate the power of isolation and sadness. For a more deep description on how we have dealt with this point, read the column “Looking Inside” under the Struggle label.
Being Resourceful
Sadly, I have to warn you that some of the people that you think they will be there for you, will be incapable to help you. Example of this are spouses who struggle so much with their own JXG issues that they just can’t give what they do not have. Friends or family members that are so scared and confused that without realizing, minimize your situation as a way of protecting themselves. I know how hurtful this is, but remember, it does not matter where the support comes as long as you have it. You will be happily amazed by the caring and helping hands that will appear from where you least expected (i.e.: other JXG parents). Asking for professional assistance from a counselor or a therapist is another excellent way to build a safe place to work your emotions around JXG. If you believe in a higher power, praying could be a powerful source of peace and hope. For a more deep description on how we have dealt with this point, read the column “Not Always on the Same Page” under the Love Ones label.
Normalizing Diversity
After working with my counselor on how I could explain to
The first few weeks after Santi was diagnosed, I spent a lot of time reading any forum or blog where JXG parents talked about their concerns. I particularly remember a post by a young man who just graduated from college and had JXG during his childhood. Even though he shared that he lost the sight of one of his eyes due to the condition, he said that the worst things parents could do was to treat their children as they had a disability or were inferior in anyway. That massage has been embedded in my heart since then and I consider it the best advice.
Answering Questions
Questions and your answers will vary enormously depending on who is asking and how you are feeling at that particular moment. We have 3 different answers. For a small group of people that we care about a lot, we usually give the info on the “About JXG” section of the website. I noticed that people understand that explanation very easily. But most of the time, for those that are not close to us and we see on a semi regular basis (i.e.: baby sitters, acquaintances, nurses), I usually tell them: “…he has a non-contagious skin condition that goes away in a couple of years”. And for kids, strangers, or when I am in a hurry, I just say: “…he has allergies”. If they ask, allergies to what (which most of the time they won’t), I say: “…the doctors are figuring it out”. I realized that as Santiago grows up, he is going to pick on how a “big or little deal” his spots are depending on how I handle these questions. I am sure that a 15 minute explanation each time someone asks, it won’t be sending the message we want.
Setting Healthy Boundaries
I, honestly, cannot count all times that we have been asked about Santi’s lesions. Questions came from close friends and family as well as complete strangers. Some felt sincere and prudent and others were invasive and intrusive. I was surprised by some people’s inability to read body language and even very straight forward attempts to change the subject. At the beginning, we use to educate everybody that asked about JXG and histiocytic disorders but after a while it became an exhausting task. Finally, we understood that it was not our job to become JXG teachers and that it was OK to give people a short answer. Nowadays, I am very direct and if someone asks more questions or comments than what I want to answer, I say: “…you know, this is something that my husband and I have to talk about a lot, so we would really appreciate if you could go to our website (jxgonlinesupport.com) and read all the info there. It is explained in a very friendly manner.
Dealing with Staring
It is not uncommon for us that when walking in a room full of strangers, people stare at Santiago. I use the word people because it comes from children as well as adults. It usually gets worse at Church, B-day parties, restaurants and any other place that we have to stay still for a while. At the beginning, we used to stare back at the indiscreet viewers until they had to look away. I know, it is not the most mature thing to do but we almost could not help it. It was the mama bear instinct calling. However, after a while, I understood that the hard gaze battles usually left me feeling upset. So I decided that it is not worthy it to loose my calmness for curious or stupid persons. Nowadays, what I do instead is give Santi many kisses and hugs him tightly. I stay tall, very proud of my baby and I show him even more. My husband came up with a more creative approach, when kids or adult are staring at Santi's lesions like hypnotized, he waves his hand to them and says hi with a big smile. It works every time, they wake up from their enchant immediately!
Advocating for Your Child
Since JXG is a rare disease that doctors are still learning about, it is important to be proactive. Learning about the condition from reliable sources and comparing notes with other JXG parents will help you to ask better questions to your doctors and make more informed decisions. If you feel that getting a second or third opinion will be beneficial for medical reasons and will give you some peace of mind, I encourage you to do it. Your doctors, the HAA or some JXG parents can give you info on the best specialists in the country.
Being Prepared
After I have been asked twice at a restaurant if Santiago had chicken pox, my husband and I decided to ask Santi’s dermatologist to write a brief letter explaining what JXG is and that is addressed “To Whom it May Concern”. I left a copy of it at the child care center and another one with the manager of the swimming pool we go to. This is just a preventive measurement in case other parents inquire about his bumps. I also carry a copy of the letter in his diaper bag. Unfortunately, I know the case of a mom that had the same experience and was denied services at a hair salon. So far, I never had to use the letter we bring and if someone questioned at the child care or the swimming pool nothing has been said to me. For most JXG parents, whose children’s’ lesions are not as visible and multiple as Santiago’s, this might be completely needless but for those in our situation it may be useful.
