Normal. What an interesting word. Everyone has their own definition of "normal". I guess, for me, "normal" is nothing special, just everyday ordinary things. Maybe that's why we did the unthinkable. We took our trach baby to an indoor water park for vacation.
Here in Alabama, it is so hot during the summer that you really can't do anything outside unless it involves water. So, people here spend a lot of time in the pool. Water and trachs do not mix. It can be dangerous if water goes down the trach because it is a direct pathway to the lungs. Aspiration pneumonia is a common concern for trached people. Even baths are frowned upon by some people. I know many trach mommies who do not even bathe their kids, they just get sponge baths. Putting them in or near a pool is, to them, a HUGE no no. The beach is out of the question. To me, this is definitely not "normal". I understand the seriousness of water being around the trach but to not take a bath seems kind of paranoid to me. I do not want Noah to fear water. I want him to respect it and be careful. I want him to be able to enjoy summers without being stuck in the house and I want him to enjoy the beach as much as we do. I guess I want him to be "normal". So what do we do? We go to a water park!!! He loved it!!! I did take many precautions and stayed with him (actually hovered over him) the whole time. I made sure his trach was capped, then tucked it under his swim shirt. He then wore a swim vest for added protection. The suction machine was right there with us. Regardless of the precautions, I knew that at some point while we were there that his face/neck would end up in the water. Well, it did because he fell face first. I had a small heart attack and grabbed him up. He came up laughing. There was no coughing, no gagging and we didnt even have to suction. Thank goodness for caps. I am sure that some people watching me thought I was extremely overprotective the way I followed him around and was right behind him at all times. I even tried to hold his hand some but he wanted no part of that. Looking at him, you could not even see the trach because it was covered by the shirt. He almost looked "normal". I know there will probably be some trach mommies who read this and think I am the worst mother for allowing him near water. But, for us, there is no option. He needs to experience life just like my girls do and although extra precautions should be made, the trach and ventilator should not prevent him from enjoying life.
Everyone wants to be "normal". We all want to be accepted and not treated differently. This is especially true for special needs children and their parents. Yes our lives are full of appointments, procedures, equipment issues, etc. We are sleep deprived, stressed and sometimes overwhelmed, which is not "normal". Right after Noah came home, we had to make many accommodations, one of which was our social lives. Everything was still new to us and it was really hard to get out with him and all of his equipment. We stopped going to church and stayed home most of the time. Right at first, people would call and come by. Once we were home for a few months, that stopped. People began to stop calling because they did not want to interrupt our sleep. We were dropped from church committees. People stopped asking us for favors. This became our new "normal" for awhile. Then, one day a friend from church asked me to cook dinner for him and his family. I forgot the reason but I readily agreed. So, I went with Noah to the store to get the ingredients, came home and cooked their meal. I must say I thoroughly enjoyed it. For the first time in a long time I felt "normal" and needed. It was an awesome feeling. So a special thanks goes to Kevin for making a special needs mom feel "normal" again.
I can go on and on about this subject and I may do another blog on this later. But for now, please realize that special needs families want the same thing as any "normal" family. We want to belong and be a part of everyday life. That's why we take trach babies to the beach and to water parks and give them baths. Don't be afraid to call us. If we are asleep, we will call you back. Don't be afraid to ask us to do things. We may have to juggle our schedule and get extra help but thats ok. Don't be afraid to come by our home. Our house will probably be a mess but we will enjoy the company. Don't be afraid to ask questions. We are like any parent and love to talk about our kids plus we want to raise awareness of special needs so any information we can give people is important to us. Above all, remember that we want to be "normal" too.