Poor Pitiful Me. . .

Today I am feeling sorry for myself. I don't usually do this but today I feel weak, helpless, and full of self-pity. Sometimes getting my feelings out, even if it is on the keyboard, helps me to feel much better afterwards. So here it goes. . . I am so tired of carrying the cross that I have to carry. So tired of the burdens that go along with it. I'm referring to being a mother to a disabled child. I sound harsh, I know. What kind of mother would complain about being tired of taking care of her handicapped child? That would be me. I am so so so tired. Please understand though, that I am not tired of Wil, just the responsibilities that he entails. I was trying to stay motivated on cleaning my 'always' trashed home, when the familiar words of, "Mom I'm leaking" ran through the house. Those words are as annoying to me as fingernails down a chalkboard. Wil has an ostomy bag and is also incontinent. When he says that he is leaking, it means that his bag is leaking. Today I walked into the living room to see a puddle of liquid fecies next to him and his shirt and pants were soaked. I go and get the supplies, cutting out a hole in the 'wafer' large enough to fit his stomah. I grabbed the diaper wipes, a new bag, and a new diaper and begrudgingly headed towards the living room. Now I must disrobe him, starting with his shoes, braces, socks, and so on. I must carefully take his pants off so I don't cover him in his own waste. All the while more fecies is pooring out onto our woods floors. Taking his shirt off can be quite tricky too. I do it like it a pro not letting one drop get on him. I start to peel off the old bag and continued to clean him up, putting on the new bag and diaper. Now I get to clean up the floor and take the mess to the garbage and the soiled clothes to the dirty laundry pile. I realilze that this doesn't sound that bad, there are worse things to clean up after; however, this is the fifth time this week. Twice was somewhere between 2:00 and 4:00 in the morning. All of his blankets, soft chairs, and his spiderman couch get soiled. Last week we finally had to throw out the couch because it had been washed so many times it was falling apart. The Scooby Doo and Batman chair are not far behind. My upstairs bathroom and the kids' bedroom always smell of dirty diapers and ostomy bags. I am so tired of that smell. I'm tired of constantly washing soiled blankets and clothing. Wil also has a feeding tube (peg tube) in his stomach and this week the plug part tore off. He is fine but now his gastric juices keep coming out. They did this before too, when it would come unplugged, but now it is all the time. Let me tell you that if you thought grease stains were hard to get out of clothing, try gastric acid. It's almost impossible, Wil has many a stained shirts. My solution until we get to the doctors is a band-aid covering it. I'm tired of giving out meds everyday and before every meal. I'm tired of tube feedings several times a day. I'm tired of carrying him when it is too far to walk. Is it so bad that I just want a normal life. I want my 6, soon to be 7-year-old, to be able to the things that his peers can do. It breaks my heart that I will never see him run or climb on things as his brothers do. A couple of weeks ago I took all three of the boys to the mall to go Christmas shopping for their dad. As we were leaving Saige raced to the car, Asher was playing and climbing on the 'handicapped' parking sign, and there was Wil with his crutches trying to figure out how he could walk on the curb. He had one crutch on the curb and the other on the street, trying really hard to get his left leg onto the curb while his right leg stayed on the street. After several attempts he gave up and continued to walk to the car. I wanted to start crying right then and there. It can be quite difficult sometimes to just do the daily work that comes with a handicapped child, but to know that there are so many things that he will never be able to do, the things that so many other children can do and they take it for granted. I will never look at a child walking the curb the same way again. It will always bring me to the memory of watching my son, trying to act like all the other children, and unable to do the task. There are so many memories of instances such as this. I remeber the first time that I heard him say 'I can't'. He was three and we were coming back from a vacation in Tennessee with some friends. We had stopped at a reststop and all of the kids were running around playing tag. Wil was sitting by a tree. My friend asked him why he wasn't playing and his smiling response was, "I can't run." That memory can make me cry in an instant, as I type the tears are forming and dripping down my cheeks. Last year was the first time that he asked me why God made him with spina bifida. He told me of all the things he'd like to do as he gets bigger and is able to walk and run. I sat down with him and explained to him his condition and the expectations of it. I also told him that God does perform miracles but we don't know what His plan is for Wil and that God may be able to use him better from a wheelchair than on his legs. I also told him that when we die here on earth, we leave behind our imperfect bodies and we will live with Christ forever in our new glorifed bodies. Now all he talks about is dying, because when he dies he will be able to run and fly. I've never in my life met a young child that is excited about dying. He's excited to get a new body that works right. As a mother it breaks my heart to see my son unable to do the simple things that we all do and take for granted. As the kind of mother that I am I will also never indulge these things to my son. We want him to be as independant as possible and to never give up. He can get quite tuckered out with walking and many times will whine and want you to carry him. Bryan and I try to stick to our guns and tell him that he is a big boy and is able to do it on his own. Of course he always throws in the 'You don't have spina bifida, I do' line and trys to guilt you into it. I know that there will always be obstacles for our family and things will always be difficult for Wil. There is never a dull day in our home and always something to do conerning Wil. Normally I don't feel sorry for him or me, but once in awhile my flesh takes over and all I feel like doing is weeping for our 'sucky' situation. I weep for Wil, for myself, for Bryan, and for Wil's brothers. All of us carry a cross, all of us are burdened by this situation, Wil more so than the rest of us. My 'mother's dream' is to see my son restored physically to wholeness, but I don't know the Lord's plan. Through all of this I have seen highs and lows in myself, spiritually, physically, and emotionally. I have grown in ways that would of never been possible if not for this situation. I've also seen myself at my all time lows too. Life is like a rollercoaster, the ups and downs are thrilling and can sometimes fill you with nausea. My cry is over, along with my self-pity. Only about once or twice a year do I feel this way, all caught up in my own sorrow. I'm so glad that I don't live this way on a daily basis. God has blessed me in every situation and with everyone that he has placed in my life. I have a great husband and great children! It would be nice for things to be easier, more 'normal', but I honestly think that if our situation would change then so would we and the direction that God wants us to go in.