With all of the fun Bubba's birthday brings it also brings lots of appointments. We have to meet with all of his case workers every year to make sure that everything is OK with his services and needs. It feels as if my front door is a constant parade of different people coming into to observe, judge our situation, and then advise me. Yes, more often than not this is frustrating. I have been Bubbba's mom for 11 years and I have heard it all. So, as they sit and tell me what to do I just politely sit there and nod in a agreement. It is hard not to feel judged as they look to see where he is sleeping, his medications, wheel char, equipment, and feeding supplies. I am asked to provide his medical records, IEP (school info), doctors information, insurance information, and any thing new that has changed in our home or with Bubba since the last visit. I am asked to write a very detailed account of my daily tasks as Bubba's primary care giver. With each visit I feel the need to clean my home as if I were expecting a visit from the Queen, although I am not sure if the Queen would judge as harshly as some of these people. wink!
So, if you are ever feeling down or judged by your peers in your role as a mother than you are a more than welcome to come over to my house for one of these fun appointments. I have one next week and the following week. While you are here you will hear me have to describe in great detail how I have to change my 11 year old child's diaper and how because of his liquid diet they are often explosive and messy. Then you will hear how I have to do multiple loads of clothing just to care for the soiled clothing and how often times multiple baths are needed. I will then have to describe how difficult it is to change Bubba's diapers in public, seeing as how he is to big for a baby's changing table and his legs are often to weak to support him while standing..... yes it is a CRAZY sight to see. wink! I will then have to explain how often I give Bubba his feeds through his g-tube. You will hear as I explain how hard it is if I ever forget his formula, tubing, or syringe. It isn't as simple as being able to drive through a drive through and pick up a quick replacement. His formula is special ordered and if we leave home with out it we are in TROUBLE. You will then hear about all of his many doctors and appointments and every plan we have in place to care for him. Then I will be asked about my nights with him. You will hear me explain the different levels of pain he experiences and how I am able to comfort him depending on the level. I will have to explain to them that yes, I can function on 3-5 hours of sleep nightly just fine. You will hear me have to explain how I can meet Regan's need while still caring for all of Bubba's needs. I will have to go on to describe how difficult it is to not be able to just pick up and go to the pool or the beach with both children, how because of the sun I am unable to ever enjoy simple things like this with both children. I have to explain what I do with Regan while taking Bubba to all of appointments. I have to explain how badly I wish that I could just sign Regan up for soccer like any other child but am terrified at the fact that it is an out door sport and what if I can't be there to cheer her on because I am taking care of Bubba. I will then have to explain all of the indoor activates that I have found that they both can do. I will then be asked how I cope with all of this. You will then hear about my wonderful support system that I have in my friends and family. You will hear me explain that really truly I am ok with the fact that I will never hear "I love you mommy" come out of his mouth, dance with him at his wedding, have grandchildren by him, wave good bye as he heads off to boy scout camp, or cheer from the side lines at his football game. Don't get me wrong some days these facts are harder than other but regardless I have to reassure them that I am OK.
Sounds fun doesn't it??? Well, the invitation has been extended and you are more than welcome to come and watch as my skills as a mother are put under a magnifying glass. So, if you are ever feeling overwhelmed or judged.... come and I have a feeling you will walk away feeling great about your abilities as a mother..... me on the other hand will probably be feeling self pitty..... wink!
I was once told that being a mother of special needs children is the same as being the mother to any other child..... I have to diagree. The demands are much harder but the rewards in Heaven will be grand!
"if you change the way you look at things, the things you look at change."