It's been a very busy year for us. There have been many changes to our lives which is why I hadn't updated on here. I recently came to the conclusion that I have been in denial of Gio's condition, which is why I stopped writing. At first, I thought writing would help me cope. I thought I was advocating for my son and his rights and I thought I was bringing awareness to an issue not many are aware of. I did these things because I thought I was in acceptance of my son's condition. I was wrong.
Of course I support my son and I will never stop being his voice. I thought that I had come to accept that my son's life would not be easy, but who's is? I thought that I was doing things because I had accepted the challenge that was given to us, but that was not the case at all. I believe I did the things I did because as a mother it is your instinct to fight for your child. You fight for their happiness, their health, and their future. When they told me Gio had Down Syndrome, they told me he needed therapies, he needed to be seen at the Down Syndrome clinic twice a year, he needed shoes with insoles and he needed to have a diet particularly high in fatty foods. I did these things not because I had accepted the news and was ok with it; I did it because Gio is my son and it was what needed to be done for his own good. It's like when your child is getting a cold. You see the symptoms and you can see something is wrong. You take them to the doctor and the doctor prescribes medicines. With the busy lifestyles the majority of us lead we don't stop and think "My child has a virus I should stop what I'm doing for the next two days and give my full attention to him/her." Especially if you have more kids. What we do is we give them the medicine and wait for it to go away. Sure we stop for an hour or so to baby our sick child and tend to their needs, but we don't fully process the fact that our child is sick. Perhaps it's the fact that a cold is so common, or perhaps it's because we refuse to accept that for a moment our child has become weak. We want to believe our children are invincible, as well as ourselves. We don't usually take the time to really process events that could cause some sort of interruption in our busy lives. That is how I felt. I did the things I needed to do not because I saw my child with a disability, but because I was told that was what NEEDED to be done.
Now with this same obedience, I will do whatever it takes to make my child's life "easier" or more "normal," for lack of a better term. I've mentioned before that Gio's biggest struggle is with communication. He only speaks if he is prompted and he still needs to learn that he can ask for thing without crying. He says basic words and is now learning body parts and colors. This has been very difficult to accept. I don't spend too much time with other kids his age so when he makes progress I get excited and think "Gio's not that bad. He's going to talk. It's just going to take some time." This was my denial.
I recently started a new job where I only work 3 days a week. This allowed me to truly open my eyes to what life really is like for not only him, but me as his mother. My biggest fear is for him not to be able to communicate something so simple, such as "I'm hungry." I have been fortunate enough to keep him in a little bubble of protection from the "real" world. He is always accompanied by someone who is able to figure out his needs. The problem is he is getting older and I will not be able to keep him in that bubble forever. This is when it hit me. MY son HAS a disability. My son WILL face adversities that are not typical for a child. With this realization, also came the realization that I have not been able to grieve the situation. Some might think "Why would you grieve? You have your child, it could be worse." Yeah, it can, but it's not. This is what it is and this is a difficult situation. I've learned that your child doesn't have to be physically gone for you to have something to grieve about. In the poem "Welcome to Holland," the author, Emily Perl Kingsley, perfectly describes the loss a parent feels when you find out your child has a disability. I've read it over and over and over again. But I recently read it a few days ago and it had a whole new meaning to me because I have finally accepted my loss. I have also learned to see what I have gained in this situation. The loss isn't something that needs a funeral or anything like that. It is a loss you deal with on your own. It is to accept that it is not your fault. It is to see that despite all the plans you had for yourself and your child, the universe has a way of showing you your plans are meaningless. This realization has also helped me see the depth of Gio's need for me to be in a good state of mind always. One can say, every child needs you to be happy, but a child who cannot talk needs that so much more. They need so much more patience and they need you to WANT to learn them. It is truly a bond that words cannot express, literally. People have complimented how well I can read Gio's emotions and needs, but this ties back to my fear. I don't want Gio to become too dependent on me being his interpreter to the world what he needs and how he feels that he doesn't motivate himself to learn some form of communication. Luckily, his therapist has suggested a talker device. This device will talk for him in a sense. But the concept of holding a conversation past just expressing his basic needs, is something Gio still needs to learn. According to his diagnosis, however, Gio has a "permanent and severe expressive speech impairment." This is not saying that Gio will never be able to verbally communicate, but rather it means that he will not be able to hold a conversation where he can express emotions and opinions on particular topics. His speech will be to express his needs more than anything else. Reading that diagnosis broke my heart. I want nothing more than for Gio to come home from school and not only tell me how it went, but to tell me how he felt. You don't realize how much something means until it is not available to you. I use to get so annoyed by my little sister's stories about how some girl didn't let anyone else play tether ball during recess because she thought she was the best. But now that I've been told Gio isn't going to be able to tell me those stories makes me appreciate them so much.
A few months back, my cousin (who's son has Autism) and I were at a friends house watching the ESPYs, and they had given an award to football player, Devon Still of the Cincinnati Bengals because his daughter had been diagnosed with cancer at a young age and he started a foundation to help children with cancer. Our friend asked my cousin and I if we had the option to change what our kids have in exchange for cancer would we do it. My cousin didn't hesitate in saying YES. I was a little shocked. How could you trade a disability for a terminal disease? My argument was how could you say you rather see your child go through chemo and being hooked up to machines giving them drugs and dealing with surgeries rather than what we dealt with. Sure we took our kids to therapies, and sure our kids have to stick to certain routines, but in my mind at that time it wasn't THAT bad, there wasn't a possibility that they would die from it. My cousin immediately expressed that if there was a cure for his son's condition he would take it in a heartbeat. That was it. The pure possibility of being cured was enough because as far as our boys are concerned, their condition is permanent. There is no chemo or medication that could take away Gio's extra chromosome. At that moment I didn't agree. Of course it was all hypothetical, but up until now I didn't realize my cousins point. There is no doctor in the world that will tell me "Here is a possible solution to cure your son and help him lead a healthy, normal life." Nothing is guaranteed, but I've come to see that having the option of a cure is one hell of an option regardless of the situation.
If someone came up to me and said, "This will help diminish your son's condition or just help him talk" believe that there would be little to no hesitation on my part to accept their solution. After reading the diagnosis that Gio now carries, I pray and hope that somewhere there is our chance not necessarily for a cure, but just a chance at one day being able to take a walk with my son in the park and have a conversation about how beautiful nature can be and how big the world is. To sit outside on a summer night and have him ask me why there are so many stars and why are they so bright and why does the moon hide sometimes and why life is so mysteriously beautiful. I hated the "why" phase when my sister was younger. She wanted all the answers to fill her curiosity and I would get frustrated because I didn't have them. Now, I crave those "why" questions, and one day that craving will be fulfilled because one thing I will continue to be in denial of is that my son will not hold a conversation. Gio WILL talk. It'll take A LOT of work, but I was raised to prove people wrong.