In the past few posts, I outlined finding out our son was going to be born with a cleft lip and palate, our birth story and NICU stay, and meeting our plastic surgeon.
Now I want to focus on the realities of having a child who is different. It is much easier to deal with differences that are hidden, but when it is something that is blatantly obvious like a birth defect on the face, it is much harder.
We knew that we would have people stare. We knew that we would have people point or make comments. We knew that some people would ask questions, We knew that some people would give us unwanted advice. This all happened and I feel like my husband and I dealt with it a little differently. I have had anxiety since I was 16 years old. I have been on medication since that time. When I was pregnant and after while breastfeeding was the only time I was not medicated for my anxiety. I do not deal with negative comments, people who disapprove, and social situations where I stand out. It makes me incredibly anxious and I want to leave the situation immediately. I was constantly worried about what others would think and being accepted by others was my main objective in life. Not being on my medication, I was worried that this was going to be intensified.
The negative comments typically came from children. Now as a teacher, I know that children are genuinely curious and they do not know how to tactfully say things when they are young. The comments still hurt, but knowing the child was genuinely curious, helped some. I remember going to my school to work in my classroom during the summer. Our school was always open throughout the summer, so we could go in and out. There was a child and I believe they were with one of the other teachers helping with their classroom. I heard her yell, "Mommy look at that really ugly baby! What is wrong with him?" I did not turn around. I pretended like I did not hear her, but I did go into my room and broke down and cried. This was the first negative comment and it made me realize that this may be our reality until his surgery in 5 months. Will I have to deal with this every time we go out? Can we handle this? This is not fair that he is being treated like that. Of course he had no idea what was going on, he was an infant.
I was actually surprised that after this we did not have as many negative comments like I suspected. What we did have was questions. People who were really curious about him. I would much rather someone ask questions and want to be educated, than to say negative things about him without knowing his situation. Answering the questions everywhere we went became exhausting. It was constant and it was the same questions over and over. At one point, we would cover his carrier or keep him home because we needed a break from the questions. This may seem silly to someone on the outside, but when you have so many other things you are dealing with in addition to constant specialized feeding, consistent doctor appointments, sleepless nights, and working to these constant questions, you just need a break.
Some misconceptions that people had or questions they had were:
* He just needs one surgery and then he will be "fixed;" First of all he is not broken and does not need to be fixed. I would then tell them that he would need surgeries throughout his life as he grew.
*Does he have a syndrome or a mental disability? : No it is isolated. Many people did not know this.
*How does he eat?: I would explain that he had a special bottle.
*Are you going to get it fixed?: Again, he is not broken, and yes I have an entire plan with his specialists.
Most of the time, the people thanked us for teaching them about my son and I hoped that they could pass on that information to others to spread awareness of clefts. If it was a child, I really hoped that they could remember this in the future when they meet someone with a cleft lip and they are more accepting of the differences.
We posted information on our son when he was born for family and friends. We had amazing family members and friends that supported us through the surgeries and everything else. They are still there for us! Sadly it is not uncommon for some family or friends to avoid contact with you. It is mostly because they do not know what to saw. They do not know how to interact with you because they are afraid to say something that will upset you or it will be the wrong thing. Honestly, I feel like it is better to show up and say the wrong thing, than to not show up and say nothing. It is times like this that you can test a true friendship. If you are a friend or a family member of someone who has a child that is different, I urge you to show up. Be there for them. Even if they do not ask, they will need that support.
In the end, my anxiety actually did not prevent us from talking to others about my son. We were able to educate many people about clefts throughout his entire life. Surgeries and the recovery from surgeries will provide an entirely different set of questions. When we did have negative comments, I was able to stand up for my child. Instead of being upset over things, I went into mom defensive mode to prevent them from saying those things about someone else again. Some people you won't be able to affect. Some people are just mean and unaccepting to others and differences. Those are the people that we have to accept that it is a lost cause to educate. If we try and then it does not affect them, then at least we tried to educate. They obviously have something going on in their lives that make them that angry and I pray it is resolved for them.
The amount of supportive and accepting individuals that we knew well and that we met in passing were very accepting, positive, and supportive. You always think the worst and people always surprise me. If you do not put yourself out there, you will never know.
I also want to note that if you are struggling with dealing with negative comments or questions about your child, there are support groups on Facebook for children with different needs. There are cleft lip groups of parents just like you. It helps to talk to others that are in the same boat.
My next post will be about how family members and friends can help and communicate with someone in our shoes. I will include things to say and things not to say.
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