Letter to Support Group Members

Dear Members and Visitors,

I would like to remind everyone that our support group is made up of caring and loving families, who have children, teens, and adult loved ones with Microtia, Atresia, HFM, Treacher Collins, and/or Goldenhar Syndrome. All of us are beautiful and intelligent. We have character. Some of us even have a lot of flair. We have members who have been bullied and we have members who have managed to not be bullied, thankfully. We have all been raised to be confident and to love ourselves, but sometimes/many times we may be hurt to the point where those hurtful feelings leave scars that we just don’t forget about or are unable to overcome. Microtia affects our ear(s), not our limbs or our intelligence or our love for life. We all still strive for the very best in life. Even though some things may seem as though they don’t come easy to us, remember that this happens even to those who do not have Microita, Atresia, HFM, Treacher Collins, or Goldenhar Syndrome.

Microtia is a little ear that is sometimes accompanied by a crooked smile, a starry eye, a cleft palate, a curvy spine, and a bit of hard hearing. Thankfully, Microtia is not a disease like cancer or a chronic ailment such as arthritis. Some of us may choose to keep our little ears and not opt for surgery. Some of us may opt for surgery and be happy with the decision that we have made. Some of us may not be happy with the surgical decision that was made and continue to seek another solution. Some of us may choose to have a prosthetic ear and some of us may choose to remove our ear(s), completely. Some of us may believe in BAHAs (Bone Anchored Hearing Aids) and some of us may not. Some of our children may have speech delays. Some of our children may not have any delays at all and may even speak sooner than children who have perfect hearing and speech. Some of our children may have been held back a year in school because of struggling in the classroom due to their hearing loss. Some may excel in everything they do. Some of our children may have been lucky enough to qualify for an IEP or 504 Plan and some of us may not have needed one at all or even believe that our children need one. My point is, we are all in this together no matter what our experiences have been and what decisions we will make. Every one of us is different and each one of us will experience something different in life. As parents, we only want what is best for our children and as individuals we only want what’s best for us depending on what we believe in personally. As teens and adults, it is still possible to make decisions later in life that are different from the decisions made by your parents or that were made by you when your parents thought you were old enough to make these decisions. Any decision you make is probably the best or right decision for you and/or your family. Please keep in mind, that over the years advancements have been made in medical technology, improvements have been made to surgical technique, and more options have become available for ear reconstruction through the help of plastic surgery.

Even though our support group may have information and posts discussing surgery, I want everyone to know who has not opted for surgery that we are all here for you too. Our group is a support chain for anyone having Microtia and all of the things that come along with it. I hope that each and every one of you feel comfortable here and know that you are welcome regardless of all of the decisions taking place. These discussions and decisions are being made from our hearts and what we honestly believe is for the best for our children and for ourselves. Many of us have chosen to keep our little ears and I think that is wonderful. Little ears are beautiful and so are the individuals wearing them. It just depends on what you have experienced and what you want that will allow you to be happy in life. We’re all beautiful individuals…and a little ear should never be viewed as something that is “broken” or needs to be “fixed.” None of us are broken. We do what works best for us. Although we may have a difference in opinion, we can all be supportive to one another, regardless of the decisions we make. Everyone in our support group is fantastic. Our wonderful group would not be the support group it is today without all of you being a part of it. Thank you to all of you for being a part of our support group. Again, we are all here for everyone no matter what you decide.

The information provided on Ear Community is only meant to be helpful and to help guide you in the right direction.  This information is not meant to be taken as medical advice.  Always consult with your physician, surgeon, or audiologist on any and all concerns.  This information is not meant to take the place of a consult or an appointment with a medical professional.  The information found on this site can help you learn about options that can help you make the best decisions.

Sincerely,

Melissa Tumblin

Founder of Ear Community and the Microtia and Atresia Support Group on Facebook