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.