Re: Is this what Mito does? ( Elaine)

[Guest guest]

I am truely sorry for your loss. I have an eleven year old daughter newly diagnosed with mito at Thanksgiving. Not sure what all the test results mean

yey but have had so much input from those here on the list. Joanne on this list has been a true blessing for sure as she has two daughters with mito.

My daughter cries and prays for Jesus return so she will not have to suffer anymore. The other morning she woke up and was yelling at God because she was still here. So sad.

And biy how p[eople are cruel. Today in Wal-Mart it took us twice as long because of rude people. Just stopping in the way and walking in frot of us and stopping to talk like they do not see us. is on a big walmart scooter....STUPID! I usually am very king but today some of these people just take the cake, like a lady from our church....our church mind you. And elderly lady walked up to and said get off that thing it is not a toy and you are not crippled!!!! when I got around all the people to she was in tears and the lady was gone. Good thing cause I would have laid hands on and prayed later!!!

never wants to go back to Walmart again. I cant blame her.

People have no clue how sick our children really are. If they could just walk in our shoes for a little while they would be ready to run the other way.

I am very sorry for raving....just needed to vent a little frustration I guess.

Again I am sorry for your loss and will keep you and yours in our prayers.

Just remember your little one is happy and healthy, running and playing and keeping a close eye on you through the holes in the floor of Heaven, so dont forget to look up and give a big smile for your precious angel is watching you!!!

Hugs!!!

Horsley

Mom to 11

leehorsley@...

[Guest guest]

Hi ,

Thank you for your email. I am so sorry your daughter had to put up with peoples uncaring way's. I used to take out for walks, and here in S.A. believe me, they are not not ready for special kids, and we used to get stares..., I remember the one time I was taking for a check up to the Dr's, and he must have looked really special with his tube in...and the mom's looked at me with this really dumb look and asked " shame, what's wrong with him" and I smiled and said, Oh! nothing, we're just here for a check up....giggle I got to the point where I was just, so, so ,so tired of explaining to everyone...also I noticed little kids would come up and ask why he had this tube in his nose....and I'd smile at them and start explaining that, that was how he got his food and nourishment into his body, but before I could finish, their mothers would grab their kids away...well, the one time I stood up and said to all in the Dr's room...please don't stop your litttle children from asking questions, if they get their questions answered now, then they won't grow up to be ignorant and stupid like their parents.....(smile) I really used to give em stick...If I were with you on that day you took out, I would have created a riot at the Mall....I will not and do not tolerate anyone being unkind to our children through ignorance.

My heart goes out to you, give a big kiss from me. I am always here if you want to vent...that's what we're here for. I'M HERE ALWAYS OK.....

Have a peaceful New Year

LoveElaine

I am truely sorry for your loss. I have an eleven year old daughter newly diagnosed with mito at Thanksgiving. Not sure what all the test results mean

yey but have had so much input from those here on the list. Joanne on this list has been a true blessing for sure as she has two daughters with mito.

My daughter cries and prays for Jesus return so she will not have to suffer anymore. The other morning she woke up and was yelling at God because she was still here. So sad.

And biy how p[eople are cruel. Today in Wal-Mart it took us twice as long because of rude people. Just stopping in the way and walking in frot of us and stopping to talk like they do not see us. is on a big walmart scooter....STUPID! I usually am very king but today some of these people just take the cake, like a lady from our church....our church mind you. And elderly lady walked up to and said get off that thing it is not a toy and you are not crippled!!!! when I got around all the people to she was in tears and the lady was gone. Good thing cause I would have laid hands on and prayed later!!!

never wants to go back to Walmart again. I cant blame her.

People have no clue how sick our children really are. If they could just walk in our shoes for a little while they would be ready to run the other way.

I am very sorry for raving....just needed to vent a little frustration I guess.

Again I am sorry for your loss and will keep you and yours in our prayers.

Just remember your little one is happy and healthy, running and playing and keeping a close eye on you through the holes in the floor of Heaven, so dont forget to look up and give a big smile for your precious angel is watching you!!!

Hugs!!!

Horsley

Mom to 11

leehorsley@...

Please contact mito-owner with any problems or questions.

[Guest guest]

"Good thing cause I would have laid hands on and prayed later!!!"

We can certainly relate to that some days. Such an elegant way of putting it. I like it!!

Other children have generally been great around (6 yrs - complex IV mito), and his time at a standard day care centre, with a carer has been great for him and the other children at the centre.

Most adults have been good, although some don't know how to respond, and avoid us as a way of coping.

Our biggest struggles (thankfully mainly in the past, and not currently) have been with doctors and disability services sector agencies and individual staff.

Re: Is this what Mito does? ( Elaine)

I am truely sorry for your loss. I have an eleven year old daughter newly diagnosed with mito at Thanksgiving. Not sure what all the test results mean

yey but have had so much input from those here on the list. Joanne on this list has been a true blessing for sure as she has two daughters with mito.

My daughter cries and prays for Jesus return so she will not have to suffer anymore. The other morning she woke up and was yelling at God because she was still here. So sad.

And biy how p[eople are cruel. Today in Wal-Mart it took us twice as long because of rude people. Just stopping in the way and walking in frot of us and stopping to talk like they do not see us. is on a big walmart scooter....STUPID! I usually am very king but today some of these people just take the cake, like a lady from our church....our church mind you. And elderly lady walked up to and said get off that thing it is not a toy and you are not crippled!!!! when I got around all the people to she was in tears and the lady was gone. Good thing cause I would have laid hands on and prayed later!!!

never wants to go back to Walmart again. I cant blame her.

People have no clue how sick our children really are. If they could just walk in our shoes for a little while they would be ready to run the other way.

I am very sorry for raving....just needed to vent a little frustration I guess.

Again I am sorry for your loss and will keep you and yours in our prayers.

Just remember your little one is happy and healthy, running and playing and keeping a close eye on you through the holes in the floor of Heaven, so dont forget to look up and give a big smile for your precious angel is watching you!!!

Hugs!!!

Horsley

Mom to 11

leehorsley@...

Please contact mito-owner with any problems or questions.