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."
7 comments:
Julie,
There is NO DOUBT that you have a lot of responsibility in taking care of your sweet boy!! You are to be appreciated (rather than judged) for all the sacrifices, love and work you do for him. You amaze me. You do it all gracefully, with a smile on your face (obviously there are many times there are tears).
No judgements here...only admiration.
Your friend,
Amy-Sue
Wow our lives so similar, as I am sure many in our situation are. Although I do not have a revolving door of all those "professionals", the day to day is so similar. I understand about the diaper situation, so difficult, I try to be discreet but sometimes you can't and you have to do what you gotta do and let others judge! I have started to more frequently use his "booster" pads that we use in his night time diapers while we are out, hoping that it will make it last just a little bit longer and not have to change him in front of the world. But I will change him out on the grass in front of everyone if my only other option is the dirty bathroom floor, and Calebs legs are strong enough to hold him up but there is no way I can change him that way too messy :) Summers are also hard for us, we stay home during the day ALL THE TIME, it is too stressful on me to deal with his public craziness and try to rangle two other boys. I learned my lesson many years ago about Caleb's feeding issues. 5 years ago we flew out to chicago--last big family trip. I had changed his G-tube the day before, although I had planned to take the extra with all the attatchments, but it needed to be switched out. Our last day there we went to Six Flags, the day went great, at the time I was feeding him "manually" because he didn't have the snazzy portable pump that he now does. Well they were closing up and we go out to the car and I look down and the insulated lunch bag that I put his feeding gear in was GONE!! SICK TO MY STOMACH!! We could have bought his Pediasure at any store but not the attatchment. I ran back into the closing sick flags trying to look everywhere we had been, crying and looking like a crazy woman. We were with my cousin and her husband--who is very ambitious and went to try and talk to one of the managers who he said wasn't really taking it too serious until I came up crying. They put the word out to the workers to keep an eye out for it while they were cleaning up. Tyler took the two boys back with his cousin to get our car while I waited outside the gates hoping for a miracle. And guess what, the Lord listened to this desperate mothers prayer and it was found. I was the last person at the park at the time. That experience taught me many lessons, first and foremost Heavenly Father is watching out for my boy even when his mother is lacking :( and also that I ALWAYS need an extra extension tube with me at all times--I actually always carry an extra G-tube as well. We would have had to go to an ER to try and get a tube which would have been nuts, because it was a saturday and no way to get in touch with the medical supply co.
Anyways this turned out longer than I had planned. :) It truly is more demanding to be a mother to a child with special needs, physically, emotionally, financially and many more things. Just know that you are doing an amazing job, people always tell me they could never do what I do, and my response is always--you would if it was your child. We are not special people, just those who are fortunate to be able to care for and serve special people. Your crown in heaven will be amazing :)
Guess what?
I still think you are Super Woman.
And I am convinced as ever, that God placed your family together perfectly.
Thanking Him for the ability He has given you to love deeply. And to nurture the way you do.
I hate that you feel like you are under a microscope having to answer to people - but I know that God can even be glorified in those situations.
(I can only imagine they see other families with far less care than you give).
Wishing I could hug you from all the way over here... and hug those kids of yours too!
This made me cry. I don't know how you do all that you do!
Anyone who has ever watched you with your children knows what an amazing mother you are. Anyone who thinks otherwise is blind.
You are a true inspiration! I know how hard it can be at times (my sister who is 17 is also in a wheelchair, diapers, meds, case workers coming over, etc.) but I know that Heavenly Father knows what he is doing and sent these great little spirits to families who would love and care for them. But I also believe that they are here to help us grow too! Keep up all the great work ;)
Amanda Devlin
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