Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 : I have just returned from a family function: my niece's graduation party.. I have 2 nieces (ages 17 & 14) and 7 nephews (Ages are: 2 are 13, 2 are 12, 1 is 8, 1 is three, 1 is two) Believe me spitting, farting, being gross, rough, aggressive and competitive is just a boy thing. I wouldn't want to be locked up in any small confined place with four boys. Anyway, I walked away feeling very sad. I went to the party without my husband and carried all day. I have tried to lug her stroller in their tiny rowhome before and it was just in the way, so today, I didn't take it. I took her sand chair which I have modified with velcro, so I could sit her down to eat on the road. I had to ask my brother and sisters if they wanted to hold her....so I could go to the bathroom, get something to eat, etc. Can you believe I got excuses! I come from a large family: I have three sisters and three brothers..my one sister said: " I'm tired " , my one brother said " well, I really wanted to talk to " (then, da... take her with you). When I went to leave my other brother asked if I needed any help, I already had the car packed and was just caring her out the door, I quipped, " no I'm okay, but when I have a wheelchair to lug around, I'll take you up on your offer " . After I said it, I felt bad, he had come into the party late and was genuinely offering his help. Just to note: My sister who said she was tired did attempt to feed a few ounces of milk, and my brother who wanted to talk to my other brother, did hold her and she giggled in his lap for about 10 minutes. Something hit her funny bone...I think it was his hairy legs. When I walked out of their home toward the car, I passed two kids on the sidewalk, they were about 4 & 5 years old. The one looked up to the sky and said about the clouds, " that looks like snow " , the other said " yeah, maybe Santa will come " , the other: " yeah and Poppins, that would be cool " . I got in her carseat (she slumped in it and curled to one side and I worry that her spine will one day be effected). I drove down the block, turned the corner and cried because I wonder if will ever look at the sky and dream about the clouds and Santa and Poppins, I cried because she hasn't rolled over yet and I wonder if she will ever get to ride a bike or throw dirt like her boy cousins (they spent all day playing in a dirt pile, shooting supper soakers, playing monopoly, fighting, crying, etc). I drove away thinking I couldn't take it anymore. I wanted to stop the car, grap her and sit in traffic and have a car smash into us. With my luck, we would get hurt and I would walk around in worse spirits..maybe she would stop smiling or her brain would suffer more damage. So I cried for about 5 minutes and changed my tune: I drove home, singing her songs to get my mind out of the dark clouds. Because the future is still unknown, I can't give up on her. I get this sad about every 2 months, I do wish for peace...curled up in God's lap like the dog sleeping. When I found out in my 7th month of pregnancy that my baby had brain damage and they expected her to die. I saw a child in a wheelchair type stroller, she wore big thick glasses and she was very delayed but looked so happy. I looked at her and spoke to myself and God, that I would be able to handle a baby like that, if only my unborn baby would live. I had no idea the work and worry. I tell myself and God that I am not strong enough to go on, that I am weak. Some days are really hard. I still thank God every night for her and kiss her goodnight. A ritual I started the day she was born and didn't die. I don't know where the strength comes from but I am thankful, I always recover. I always keep everyone on this list in my prayers that we all have the strength to recover fro our bad days Amy (mom to the younger, possible mito, developmental delay, microcepaly, bladder reflux to kidney, GI reflux and GI delay in emptying, CVI, and the best smile and giggle) g. So anyway boys are like that To: Mitoonelist <Mitoonelist> Date: Saturday, June 19, 1999 1:33 AM Subject: Re: leigh's disease > > >, I just returned home from an day with my 2 grandsons, and my >daughter-in-law and other 2 grandsons. I have taken 2 tranquilizers and am >shaking and considering taking another-even if that makes it an overdose and >I am not joking or being sarcastic. I am getting too old for this, I did all >4 of my kids with all their problems which I still deal with in a million >ways and now the grandkids and believe me there are many times like now when >I think maybe I really would have been better off not having any kids. I >think I would have been better off dieing to start with myself too many >times. It becomes so overwhelming at times like this moment it is almost >more than I can take-well, actually right this moment it is too much period. >What makes me the maddest of all is that I never get any help from the >frickin medical field no matter how I approach any of the whatever you want >to call thems. Then they wonder why a person goes off the deep end, is it >any wonder? You drive along in heavy traffic with one spitting on the other >and the other spitting on the window and one screaming F this and F that and >you have tried ALL in creation and then some you have EVER EVER heard of or >could think of good and bad to work with them and NOTHING works and you have >medicated them and you wait for it to kick in but you chose the wrong things >to do like put 2 together who can't be together, the people around them got >upset, they got the wrong food somewhere, they need rest, they didn't get >fed on time, someone didn't get the right medicine on time or the right amt >or the RIGHT medicine or the right combination of medicine and food and >drink and environment.........Right at this moment I wish I was sitting in >God's lap resting, that's what I wish, knowing I would NEVER have to do this >anymore. Scoggins > Re: leigh's disease > > >>, >> >>Do you really wish your son and daughter-in-law had gone >>through with genetic counseling? If they had, you probably >>wouldn't have your grandson. In many ways I think it is a >>blessing not to know you are at risk of having a child with >>a disease. I don't know if we would have had our daughter >>had we known we would have had such a severely affected >>child, yet she is the most phenomenal thing that ever >>happened to us (our whole family). Life is full of value >>and meaning regardless if someone is sick or well. >>Sometimes when the path is more difficult it is more >>rewarding in the end! >> >>I hope I don't offend anybody with this statement...it is a >>sensitive subject for all. These are just my feelings! >> >> , mom to Adelaine >> >>-- >>The 's >>Ann Arbor, MI >>j-cooper@... >>http://www.mich.com/~jaj >> >> > > >------------------------------------------------------------------------ >ONElist members are using Shared Files in great ways! >http://www.onelist.com >Are you? If not, see our homepage for details. >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
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