Newly Diagnosed?

Dear Parent,

If you’ve only recently learned that your child has Polymicrogyria (PMG), this can be a very confusing and stressful time for you. Whether you have just welcomed your child into the world and received the diagnosis or whether you have had a strong intuition that something just wasn’t right with your child for some time now, the emotions that are brought to the surface are just about the same.

Most parents who hear the words “Polymicrogyria” have no understanding of what the term means or what it means for their child. Being told that your child has a disability can be as traumatizing as learning of a family member’s sudden death. Many parents are stunned by such news. Receiving such a message can produce overwhelming emotions of shock, disbelief, anxiety, fear, guilt and despair. Within that moment, most parents have an immediate sense of loss and mourn the child they “thought” they were going to have. For some parents, just trying to comprehend the disparity between their desires for their child and the disability that exists, compounds their emotional and intellectual efforts to adjust to the situation. They may feel grief, depression, or shame. Some may also ask questions of “why me” and conclude that they are being punished for sins or bad acts of the past. Depending on the severity of the disability and the magnitude of the demand for coping, a few parents may even contemplate death for the child or themselves. These thoughts represent an all- encompassing need to achieve inner peace.

Whichever feelings arise, are all reactions that parents may experience in the process of coming to accept their child’s diagnosis. Educating yourself and coming to accept the diagnosis and situation takes time for most people. Give yourself a chance to get used to things and know that it does get easier with time.

If you’re anything like the rest of us, you will want to find and read everything you can. It can be overwhelming at times, and you may want to read a bit and then give yourself time to absorb the information before going on to other sites. Similarly, as you read or visit online support groups, remember that every child who is diagnosed with PMG will be affected differently. Cases vary in severity from mild to severe. So please don’t try to compare your child to others. That causes added pressure and stress to yourself and to your child.   Even if they have the same type of PMG, the result will not be exactly the same. Your child will write their own story and will surprise you with what they can do as well as what they will be able to understand.

As a parent of a newly diagnosed child, one of your other immediate questions is likely to be, “What does this mean for my child’s future?” Thinking about this can make you hypervigilant. It can steal your joy and especially your peace of mind. But, it does get easier! While no one can predict the outcome for your child, you will eventually start to come to know your child and what is normal for them. You will adjust to the situation but that doesn’t make it easy. There will be good days and bad days. You will learn to treasure every single moment. Ultimately, this may be the lesson in all of this. This is a difficult situation at best, but the amount of unconditional love and joy that you will experience will be incredible! You will truly understand what it means to not take a single moment, a single smile, a giggle, one bite of food, or a single step for granted. The things ordinary people take for granted every day, like seeing your child reach for a toy, suddenly make us squeal with delight! Your picture for yourself and your child may not be the one you thought you would have painted, but it is your own original masterpiece. Unique and beautiful!

If there is any advice to be offered, it is that you can’t go through this journey alone. You need a strong support system. You may find that they people you were closest to become more distant. They may not know what to say or do, so instead of feeling awkward, they may pull away. Encourage yourself to open up the conversation with them. Tell them that you need their friendship. If you are at all like almost all other special needs parents, you will struggle to find those who truly understand – those who are “walking in the same shoes”. When you are dealing with something so unknown, often it will turn out that the closest you can get to one-on-one discussion with another person dealing with PMG, will be right here on the internet. Hopefully, that will change one day. But for now, please know that there are many of us here and we care. We GET it! And we will be here for you in ways that perhaps most of the people you know, can’t be.

To connect with other families, please visit the Contact a Family page of our website.