Normal...

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. 

Reality

Throughout these almost 3 years of being a special needs mom, I have met many other special needs mommies.  It has been so helpful to me to know that I am not alone in this journey and although our kids have different issues, we still feel the same things and want the best for our children.   It is always exciting to read about a child who no longer needs the vent or who passed a swallow study, etc.

The other day, one of my new mommy friends posted that her son was going to be getting rid of his ventilator and then eventually his trach.  I was very happy for her.  That is, until she posted the congratulations certificate from his team of doctors.  The certificate was nothing special, just his name and it stated that he had graduated from home vent clinic.  Then I began reading the comments.  All of Noah's doctors had signed it.  (This little boy goes to the same vent clinic that we attend). His pulmonary doctor, his respiratory therapist, his nutritionist, his speech therapist, his home vent nurse--all of them congratulating this little boy who will no longer have to come to vent clinic and no longer have the aggravation of a ventilator.  It really hit me then that this will never, ever happen for Noah.  I had always had a pang of sadness when reading about a child's decannulation and their ability to get rid of the vent but with that sadness came happiness for them.  Not this time.  I just felt this crushing sadness and jealousy.  I realized that this will never go away.  Yes, Noah may be able to get rid of his trach.  But, he will always have a ventilator or a bipap.  He will always have to watch his CO2 and be careful when he gets sick.  He will always have to monitor his sats.  For him, the process will never be over.

Noah has been such a trooper with everything but I know there will come a time when he questions why he has this crazy disease.  He will become rebellious with his care and maybe even try to sleep without his ventilator.  This terrifies me.  It saddens me.  I hate that he has to carry this burden.  Yes this diagnosis has made us stronger, more knowledgable, more compassionate.  But, it still sucks.  Most days the good outweigh the bad, but in this instance the sugar coating has fallen away and what we are left with the realization that this is forever.

I truly am happy for this mommy and her little boy.  I know how hard it has been on her and I am so glad he can be rid of this cumbersome machine.  However, I am still sad and if I really sit and think about it just plain angry.

Thus, is the roller coaster life of the emotions of a special needs mommy.  One day you are fine with the diagnosis and the circumstances but the next you come crashing down to reality.  CCHS sucks.

Scars

     One day while reading to Noah I noticed small white dots on his hand. Upon examination, I found more dots on his other hand and on the tops of both of his feet. He also had a few in random spots around his ankle. I could not figure out what they were. They were not red or puffy. When I touched them, he didn't act like it hurt him. It took me several days but then it hit me. The little white dots were scars. They were little scars from the many times he had been poked and prodded for blood samples and ivs. It really upset me to see those little white dots. So many bad memories came flooding back, especially the one where he had an IV in his head.

     After awhile, I realized that these scars should not be making me sad. Instead, they show me how strong and brave my little boy is. It shows me how stubborn he is to survive and that he is a fighter  The scars are the badges of a survivor and should be celebrated.

     Everyone has scars. Some are easily visible and some are not. Some are on the skin and some are emotional scars. One can dwell on the pain from these scars or one can learn from them. I am so hoping there will be no more blood samples, no more IVs, no more scars. But if there are, they will be badges of honor and I will kiss each one with love and pride.