Monday, June 25, 2012


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. 


  1. SO SO love that you took him to the water park. I did the same for Mighty Z we went everywhere and you know what??? she lived to tell the tell. We have to make our own choices on this journey some of us rock the boat, some of us keep to the strait and narrow. One is not better then the other it is just what works for our family.. Keep rockin that boat Noah will be glad you did

  2. Thanks Shelley. I do not want CCHS to rule his life, I want him to rule CCHS. (Hope that makes sense).

  3. Melinda I am glad to hear that Noah enjoyed the water park & that you are making his life normal! I hope you all are doing well!

    1. Thanks Jenny. We're doing great. Hope you guys are also.

  4. Found your blog on pinterest, but prior to that I was trying to find out more about life with a trach because my newborn daughter might have to have one put on.

    Thank you for sharing your story here. I know it takes time to write so thank you for taking the time to share. It's comforting to know what the future might look like for us.

    Also from reading several posts on your blog I can tell that you love your baby boy & family, and that you are a very strong woman. I hope that I can be that for my family.

    Again, thank you for writing.

    Oh, and I think you should frame the picture of your little boy in the water somewhere in your home! That smile and joy in his eyes, lifts anyone up!

  5. Yvonne,
    I'm so glad you found my blog. My intent for this blog was to help inform people about my son's condition and to help other parents who have children with trachs and on ventilators.

    The thought of a trach is terrifying, but please know that it is not the end of the world. Trach care becomes a regular part of every day life and just a part of a routine like brushing your teeth and bathing. There are a few issues that doctors/nurses may not tell you like the lack of vocalization after a trach and possible swallowing/eating issues. However, those issues can be resolved.

    You actually just inspired my next blog (thank you because I was having writer's block).

    Please feel free to email me or message me on facebook. I would be glad to answer any questions or try to ease any concerns you may have about a trach. I sincerely hope that your daughter does not have to have one, but if she does, don't be scared. The main thing to remember with a trach is that your child will always have an open airway (which is good), trach care (which is just cleaning the trach area) and what to do in emergencies (trach plugs and accidental decannulations where the trach is pulled out). You will learn about HMEs, speaking valves, suctioning and have to have an emergency "go bag" with trach supplies that you carry with you.

    You know your child better than anyone. Don't be afraid to ask questions, especially of the doctors and nurses. You are stronger than you think. Hang in there and good luck.

    You can email me at