Re: saddness; need advice

[Guest guest]

dearest bridget,

how aweful that one has to feal this way during the holidays. my heart goes

out to you and your sweet owen. please be assured that there is a higher

power for all to answere to later. be thanksful everyday for every hug you

get. my nephew, jacob, was diagnosed with leighs syndrome in oct. this year.

we lost him last week. he was just 14 months old. i know NOTHING about his

killer, and am searching daily for answeres. i do know that he's in a better

place now. one without judgement and hatred from others.one with out pain.

that is the only the only thing that get's our family through.

peace be with you and your loving hands as you will get the strength to

muddle through.

shawn

[Guest guest]

Bridget, it makes me angry to think of what you and your Owen and your family are going through; but, you know what? The people who are acting this way should not be allowed to have such power over your happiness. You are obviously a WONDERFUL Mom and you have a SPECIAL child. No one can change that despite whatever hurtful or thoughtless things they do.

You will give Owen a fulfilling world with the activities and events you plan for him. You will also be able to expose him to loving family and friends even if his grandmother does not know how to be in that group.

It is sad to think how people hurt one another all the time - not just with mitochondrial issues but with all of the things that make us all special in our own way.

You just hang in there and be proud of yourself and of your precious boy and have the best time ever at his birthday party.

We are supporting you and the terrific job you are doing for your little guy.

HAPPY BIRTHDAY, OWEN, and May our Good Lord bless you every day.

Virginia, Emma's Mom (2 1/3 years, Complex I)

Virginia M. Buchanan

[Guest guest]

Bridget,

I too was worried when my kids were younger that as they got older and

went to school kids would make fun of them. That has yet to happen!! They

are in a regular 5th and 6th grade class each with a one on one aide. They

are both very personable and have a great sense of humor. The kids flock to

them!! They have more friends at school than I ever imagined. is

even in the band! Granted no one asks them over for parties or whatnot,

but that doesn't bother them. They get tired easy and don't mind staying

home. They are mild MR so they don't quite understand what they are

missing. If they were of normal intelligence, I am sure they would be out

with the gang.

As for the missed party, I would be very hurt as well. I had (she died

of cancer a year ago) a best friend who had parties for her son (Chris's

real best friend who does come over often) and the boys were not invited.

That did hurt me very much. I would definitely say something to the

parents. Maybe they thought they were helping you for some reason. People

do strange things. Since your child is young, a good talk will clear the

air and let the people know that you know there is something wrong with your

son and it's ok. They don't have to be afraid to acknowledge it or talk

about it or tip toe around you. It's reality!

As for the inlaws, I don't have any, but my mom once asked me if I

thought about putting my kids away. I have a retarded brother who was in

institutions his whole life, but that's what you did back then. Besides, I

really think my parents went off the deepend after he was born. It took a

lot out of them. Don't let your MIL get you down!! My mom would tell me

how rough it was having two kids with problems, but that didn't matter to

me. They were my kids!!! You do what you do because they are your kids.

People just don't understand that we can love our kids just the way they

are!!! I would maybe sit down with your MIL and tell her what bothers you

and why. Is your husband supportive of you or does he take his mother's

side? That will make it easier or harder on you. Your son is only 3 so you

are just starting out. You will 'mature' and learn to be more firm in your

decisions and not let others bother you so much. Love your child and

remember, HE doesn't know what he's missing!!! You do, but don't let those

feelings interfer with doing things! Kids are amazing in that they will

adapt to whatever if you have a positive outlook. Nothing says you can't be

sad, but you can't let it control your life. If I let the thought of the

kids' problems and possible early death bother me on a daily basis, I think

I would have killed all of us by now! What would be the point of living?

There is nothing wrong with healthy denial.

The hubby is really bugging me now. We're off to see Jimmy Neutron

and it takes a good 30 minutes to get the kids dressed and in the van.

Please e me privately if I can help you in any way. Take care...

Sue & Jack-worn out parents to the greatest kids on earth in Las Vegas, NV-

11 & 10-Both w/Leigh's Disease (?), MR (mild), g-tube,

w/fundo, larynotracheomalacia, trach, vent 24/7. Visit us!

http://u2.lvcm.com/jscb

[Guest guest]

Happy birthday Owen.

Hey mom, everybody reacts differently to illness. My parents are also

clueless, not for lack of trying to educate them, they just don't

seem to get it. " She'll just grow out of it, right? " They do ask if

they're aware of appoinments, but get that far-off look in their eyes

when you try to explain the results. Don't let them get to you

(easier said than done I know). People seem more willing to exclude

than to have to force you to decline and explain. I don't understand

why, but we get it too.

Merry Christmas,

Jeff

[Guest guest]

Dear Bridget;

Sometimes it is very hard to be an outsider looking in on a friend

who is struggling with more on her plate than she ever imagined she would

have! You look in and you imagine you see suffering, because that

is how you feel you would deal with what your friend has to deal with.

It is ONLY as you find yourself in difficult shoes that you make them

fit!

Sometimes friends .... your closest friends even .... can't imagine

how you cope AND have absolutely no idea how to help.

Do you think it would help to tell your friend ... "I felt really sad

because Owen wasn't invited to the party. Do you think next time,

he could go too and I would make sure that he was able to enjoy the party"

This way you remove the responsibility for Owen from your friend who doesn't

yet know how to cope with you and your difficult shoes!

I'm sorry I don't quite know how to word it .... but the only people

who have had practice walking in your shoes is you and your household.

Other family members don't live it .... only you do! That is the

reality!

Outsiders deal with you as they only can imagine it might help you.

Hope that makes sense. Try not to take this as a slight, but rather

an inability to cope with your new reality ..... their problem .... NOT

YOURS!!!!

As for Christmas with MIL .... as a MIL, Christmas is a time for remembering

what was sometimes with some angst! Obviously your MIL doesn't understand

your shoes yet!!! Perhaps hubby can let her know about walking in

difficult shoes. The ananlogy of having been poor and given someone's

cast off shoes to wear .... and you walk in them and as you walk in them

they become more comfortable, even if indeed they truly don't fit very

well ... seems to fit the Mito family situation. We don't go looking

for the Mito .... it comes to our door and we make the best of it because

we have to!!!

That doesn't stop our friends from not knowing how to help you walk

better!!!

Bridget .... go outside .... look up in the sky .... stars are twinkling

..... and gain strength to deal with Christmas and the sadness from the

heavens!

Hope you have a great Christmas. Make up your mind to enjoy it

..... and others will follow your lead!

Season's greetings!

.... a granny with Mito.

Todd & Bridget Willis wrote:

Well,

I need some advice on two things that are really bothering me. First,

I should tell you a little bit about my son, Owen. He will be three

on December 30. He has global delay, (especially speech and language

and cognition; 8 month level) and mid-line hypotonia. He is very active,

lovable, and truly enjoys being with other kids. He is very gentle

and affectionate. Owen is believed to have mito, and at this time,

his metabolics doc is leaning toward PDH. That

having been said....... My

husbands best friend and his wife who have three kids of their own ages

5, 3, and 1 are having a large birthday party at a gym this coming

Saturday with 20+ kids invited. Including all of Owen's cousins,

all of our mutual friend's children, etc.... They did not invite

Owen. I am heartbroken. Owen loves to go to this gym, and our

"friends" know this. Owen does not realize that he is being excluded

but of course, my husband and I do. We know that as Owen grows he

will be faced with many obstacles and will most likely be made fun of etc...

kids can be cruel. We are worried about this but trying to prepare

ourselves for it. We were not, however, prepared for it to start

now and certainly not by two of our "closest friends". Owen is having

his 3rd birthday party there the very next day after their party, and I

did invite their children. I would not play tit for tat with children.

I am planning on saying something to our friends after the holidays.

Any advice?? I am so sad. Have any of you been through something

similar? Second problem,

.... yesterday we went to my inlaws to celebrate Christmas. My mother

in law is a person who pretends to outsiders to be a concerned grandparent

who loves her grandkids but the truth is that she is very "hands off."

She enjoys the attention she receives from others by saying she has a grandson

that is special needs. She never asks for Owen, never calls after his cardiology,

neuro, metabolic appointments... etc.. you get the picture. Yesterday

she asked me if I would have to INSTITUTIONALIZE Owen. She hinted

to this once before but this time when she got me alone she came right

out and asked!! I told her that Owen will never be institutionalized and

even if he progresses to a wheelchair vent,,, etc... that our home is his

home and that is where he will stay. Then when other relatives showed

up she said "Bridget, explain Owen's diagnoisis to everyone." She

knows we do not have a diagnosis. This is just a snapshot of many,

many times she has done and said things to me that upset me to the point

where I don't know how to deal with her anymore. I am going to see

her again on Christmas and I am sick to my stomache and cannot stop crying.

I love my son more than words can express. She constantly says "you

are going to have such a hard life with him" Cant people understand that

it is so hard to see someone you love sick and it is a pain that you cannot

explain but my son gives me more joy than anything else in the world.

When he hugs me, smiles, and says Mom, my heart melts. I

am sorry to go on and on. I am just feeling awful. Thank

you. Sincerely, Bridget

Please contact mito-owner with any problems or

questions.

[Guest guest]

I am so sorry. I really feel for you. I feel so much of the same feelings you do. I do have to say, my parents are good with Miranda and her problems although sometimes feel a bit to much pity and they look for progress that just is not there. EVERYTIME we go there for dinner. Miranda sits with us at the table, plays in her food, maybe will take a bite or two and then my dad starts his usually....OH MY, Look how good she is eating. I have never seen her eat this good before. She will be off the tubes feeds if she keeps that up...yada yada yada. Little does he realize thats all she has taken in orally ALL DAY and it was maybe 50 calories...at least 950 more to go. And dont even ask about drinking. She just does not do that either...............Now, on to my inlaws..........lol...........Sadly, I never knew my husbands dad, he was killed by a drunk driver when my husband was 18, his mom was in the same accident and has permanant brain damage. Its a sad situation. Steve, my husband, has one sister with whom he was never terribly close to. She now lives in the family home with her husband and takes care of thier mom. I agree, its a big job but she is well compensated (niether she or her husband have a real job, they are spending Steve's inheritance but thats another story) Anyway, his sister LIKES Miranda just never goes out of her way to do anything. She obviously favors our son Cody, which in itself is not fair because we have 3 kids. But the thing that hurt me the most in October she asked if she could take Kailee and Cody to Disney world. Never even mentioned the thought of Miranda ( not that she could go but she could have said, I am really sorry this is not something Miranda could do to or SOMETHING, just completely disregarded the fact she is one of our children too) And then just to top the cake....She did not even bring her anything back!!! And then when Kailee was talking to much time chosing a gift for Miranda to buy with her money she said, hurry up, its not like Miranda will notice or care if she gets anything anyway!!! That hurt! Miranda does notice and she does care.

My deepest sympathy goes out to you. I TRULY understand!

saddness; need advice

Well, I need some advice on two things that are really bothering me. First, I should tell you a little bit about my son, Owen. He will be three on December 30. He has global delay, (especially speech and language and cognition; 8 month level) and mid-line hypotonia. He is very active, lovable, and truly enjoys being with other kids. He is very gentle and affectionate. Owen is believed to have mito, and at this time, his metabolics doc is leaning toward PDH.

That having been said.......

My husbands best friend and his wife who have three kids of their own ages 5, 3, and 1 are having a large birthday party at a gym this coming Saturday with 20+ kids invited. Including all of Owen's cousins, all of our mutual friend's children, etc.... They did not invite Owen. I am heartbroken. Owen loves to go to this gym, and our "friends" know this. Owen does not realize that he is being excluded but of course, my husband and I do. We know that as Owen grows he will be faced with many obstacles and will most likely be made fun of etc... kids can be cruel. We are worried about this but trying to prepare ourselves for it. We were not, however, prepared for it to start now and certainly not by two of our "closest friends". Owen is having his 3rd birthday party there the very next day after their party, and I did invite their children. I would not play tit for tat with children. I am planning on saying something to our friends after the holidays. Any advice?? I am so sad. Have any of you been through something similar?

Second problem, ... yesterday we went to my inlaws to celebrate Christmas. My mother in law is a person who pretends to outsiders to be a concerned grandparent who loves her grandkids but the truth is that she is very "hands off." She enjoys the attention she receives from others by saying she has a grandson that is special needs. She never asks for Owen, never calls after his cardiology, neuro, metabolic appointments... etc.. you get the picture. Yesterday she asked me if I would have to INSTITUTIONALIZE Owen. She hinted to this once before but this time when she got me alone she came right out and asked!! I told her that Owen will never be institutionalized and even if he progresses to a wheelchair vent,,, etc... that our home is his home and that is where he will stay. Then when other relatives showed up she said "Bridget, explain Owen's diagnoisis to everyone." She knows we do not have a diagnosis. This is just a snapshot of many, many times she has done and said things to me that upset me to the point where I don't know how to deal with her anymore. I am going to see her again on Christmas and I am sick to my stomache and cannot stop crying. I love my son more than words can express. She constantly says "you are going to have such a hard life with him" Cant people understand that it is so hard to see someone you love sick and it is a pain that you cannot explain but my son gives me more joy than anything else in the world. When he hugs me, smiles, and says Mom, my heart melts.

I am sorry to go on and on. I am just feeling awful.

Thank you.

Sincerely,

BridgetPlease contact mito-owner with any problems or questions.

[Guest guest]

, We are so sorry to hear about the loss of your nephew. Best wishes

to your family and peace during your time of loss.

, Mom to Seth and Ben (both mito)

[Guest guest]

Bridget,

I wanted to respond to your message earlier, but life has been so busy

with the holidays! I, like many others on this list, know just what

you are going through. My mito girl, Adelaine is going to be 6 this

spring. We have discovered that some people in this world "get" her

and others don't. It seems to be an immediate reaction, as we haven't

found people changing much even with time.

We have two families that we do a lot of activities with. One

of the couples adores Adelaine and has always invited her to the b-day

parties for their kids and any other activities. Sometimes we go

and sometimes we don't, depending on how we think Laney will do in the

situation. The other couple doesn't get her at all. They have

never invited her to a b-day party and have even commented that there is

no point. Now, they are right to a certain degree, she is not aware

of being left out and probably wouldn't have a good time, but it is hurtful

to us. We know to expect it now and we make a lot of jokes to each

other about it, but we've worked to come to the point that they will never

be really intimate friends. The people that "get" Laney right away

always turn out to be really wonderful people.

My MIL spent the first few years of Adelaine's life telling us if we

only had more faith and if we would just pray a little harder she would

be healed. She doesn't get her at all. And we have lots of

family members who do the "I don't know how you do it--I could certainly

never do it." I always say I want people to understand how hard it

is, and yet have no pity for me. It seems to be a fine line that

is difficult for many people to find. We also have lots of

family members who see huge improvements in Laney every time they see her--only

she never actually changes! The worst situation we have encountered

was my brother in law telling everyone in the family who would listen that

we made a huge mistake putting Laney's g-tube in and that if she were his

child he would smother her! My husband and I make lots of dark jokes

to each other about it, and I have some very close friends and a therapist

who I vent to about these situations. In the end, we have chosen

not to spend as much time with the people who don't understand. There

are many who do, and so they get priority in our lives.

I don't know if I have any words of wisdom to help you deal with these

people who cause such pain, except for the good friends and a good therapist

part...oh and a little zoloft helps too! It is also good to know

inside yourself that they are the ones who are losing out...I know Adelaine

has captured souls and changed lives just by being...

Also, I try to focus on all the people who do understand and appreciate

her. There are many and sometimes they show up when I least expect

it.

You know what a gift your son is. You are a great mom. I'm

so sorry you are having to deal with all of this. I hope by the time

this is posted it will all be over and you and Owen can get back to just

loving each other!

Take care,

Todd & Bridget Willis wrote:

Well,

I need some advice on two things that are really bothering me. First,

I should tell you a little bit about my son, Owen. He will be three

on December 30. He has global delay, (especially speech and language

and cognition; 8 month level) and mid-line hypotonia. He is very active,

lovable, and truly enjoys being with other kids. He is very gentle

and affectionate. Owen is believed to have mito, and at this time,

his metabolics doc is leaning toward PDH. That

having been said....... My

husbands best friend and his wife who have three kids of their own ages

5, 3, and 1 are having a large birthday party at a gym this coming

Saturday with 20+ kids invited. Including all of Owen's cousins,

all of our mutual friend's children, etc.... They did not invite

Owen. I am heartbroken. Owen loves to go to this gym, and our

"friends" know this. Owen does not realize that he is being excluded

but of course, my husband and I do. We know that as Owen grows he

will be faced with many obstacles and will most likely be made fun of etc...

kids can be cruel. We are worried about this but trying to prepare

ourselves for it. We were not, however, prepared for it to start

now and certainly not by two of our "closest friends". Owen is having

his 3rd birthday party there the very next day after their party, and I

did invite their children. I would not play tit for tat with children.

I am planning on saying something to our friends after the holidays.

Any advice?? I am so sad. Have any of you been through something

similar? Second problem,

.... yesterday we went to my inlaws to celebrate Christmas. My mother

in law is a person who pretends to outsiders to be a concerned grandparent

who loves her grandkids but the truth is that she is very "hands off."

She enjoys the attention she receives from others by saying she has a grandson

that is special needs. She never asks for Owen, never calls after his cardiology,

neuro, metabolic appointments... etc.. you get the picture. Yesterday

she asked me if I would have to INSTITUTIONALIZE Owen. She hinted

to this once before but this time when she got me alone she came right

out and asked!! I told her that Owen will never be institutionalized and

even if he progresses to a wheelchair vent,,, etc... that our home is his

home and that is where he will stay. Then when other relatives showed

up she said "Bridget, explain Owen's diagnoisis to everyone." She

knows we do not have a diagnosis. This is just a snapshot of many,

many times she has done and said things to me that upset me to the point

where I don't know how to deal with her anymore. I am going to see

her again on Christmas and I am sick to my stomache and cannot stop crying.

I love my son more than words can express. She constantly says "you

are going to have such a hard life with him" Cant people understand that

it is so hard to see someone you love sick and it is a pain that you cannot

explain but my son gives me more joy than anything else in the world.

When he hugs me, smiles, and says Mom, my heart melts. I

am sorry to go on and on. I am just feeling awful. Thank

you. Sincerely, Bridget

Please contact mito-owner with any problems or

questions.

[Guest guest]

Bridget,

I believe that the average person is just ignorant to what we are going through. They feel awkward and don't know what to say and often say the wrong thing, or nothing at all, which can be just as hurtful. Parents of a special needs child definitely carry much more understanding, compassion and empathy than the average human being. Family and friends alike just do not "get it", and they never will because they don't live it. I get the "I don't know how you do it, I could never do what you do" thing all the time. My response is always the same: "I said the same thing until I found myself in this situation-now I don't have a choice. I love my daughter and there is nothing I wouldn't do for her". I also let them know that yes, it may be harder than caring for a typical child, but for one thing, it's all I know, and two, I get way more joy out of it than I do sorrow or feelings of being burdened.

As hard as it may seem to imagine, I think we were all hand picked to care for these darling angels because WE are special. Not because we're better or stronger, we are perhaps more accepting, and willing to learn. I have learned more about courage, strength and never giving up from my four year old daughter than anyone else in my life. Since Becca has been in my life I find that I am more accepting of others, even those who offend me. I am able to deal with people in a kinder way, and am not as quick to judge. I am way more compassionate and able to give to those in need and its been a real blessing with my grandmother who needs complete 24 care. I can change her diaper, bathe her and dress her easily and without feeling uncomfortable, and its because of all I've dealt with with my daughter, and all the time spent in the hospital, and with her classmates, etc.

If I could have Becca be a typical child that could run and play and not be sick, I would in a heartbeat-but just to have the pleasure of knowing her and learning from her and being a part of her life is such a gift. That is what I want people to know, that just because they aren't "normal" doesn't mean they aren't lovable and capable of loving.

If I was running Becca to soccer and ballet and softball and computer classes and playdates, perhaps I wouldn't know her as intimately as I do, and maybe she wouldn't get so much of mine and my husband's time. We probably wouldn't notice every milestone and be glued to every word she says and be desperate to enjoy all our time with her. I'm not saying I wouldn't want her to experience a "normal" life, but since that is not going to happen, I'm glad I get to be her mom and know what it's like to be loved by her, it is awesome!

So, when friends and family say or do things that are hurtful, remember, they can't possibly know what we are going through, they are ignorant of our situation. We can only try to educate them and let them know how much we love and value our children and how much joy we get from being their parents. Sorry to go on and on, this was quite therapeutic!

Rhonda-Mom to Becca the Brave

saddness; need advice

Well, I need some advice on two things that are really bothering me. First, I should tell you a little bit about my son, Owen. He will be three on December 30. He has global delay, (especially speech and language and cognition; 8 month level) and mid-line hypotonia. He is very active, lovable, and truly enjoys being with other kids. He is very gentle and affectionate. Owen is believed to have mito, and at this time, his metabolics doc is leaning toward PDH.

That having been said.......

My husbands best friend and his wife who have three kids of their own ages 5, 3, and 1 are having a large birthday party at a gym this coming Saturday with 20+ kids invited. Including all of Owen's cousins, all of our mutual friend's children, etc.... They did not invite Owen. I am heartbroken. Owen loves to go to this gym, and our "friends" know this. Owen does not realize that he is being excluded but of course, my husband and I do. We know that as Owen grows he will be faced with many obstacles and will most likely be made fun of etc... kids can be cruel. We are worried about this but trying to prepare ourselves for it. We were not, however, prepared for it to start now and certainly not by two of our "closest friends". Owen is having his 3rd birthday party there the very next day after their party, and I did invite their children. I would not play tit for tat with children. I am planning on saying something to our friends after the holidays. Any advice?? I am so sad. Have any of you been through something similar?

Second problem, ... yesterday we went to my inlaws to celebrate Christmas. My mother in law is a person who pretends to outsiders to be a concerned grandparent who loves her grandkids but the truth is that she is very "hands off." She enjoys the attention she receives from others by saying she has a grandson that is special needs. She never asks for Owen, never calls after his cardiology, neuro, metabolic appointments... etc.. you get the picture. Yesterday she asked me if I would have to INSTITUTIONALIZE Owen. She hinted to this once before but this time when she got me alone she came right out and asked!! I told her that Owen will never be institutionalized and even if he progresses to a wheelchair vent,,, etc... that our home is his home and that is where he will stay. Then when other relatives showed up she said "Bridget, explain Owen's diagnoisis to everyone." She knows we do not have a diagnosis. This is just a snapshot of many, many times she has done and said things to me that upset me to the point where I don't know how to deal with her anymore. I am going to see her again on Christmas and I am sick to my stomache and cannot stop crying. I love my son more than words can express. She constantly says "you are going to have such a hard life with him" Cant people understand that it is so hard to see someone you love sick and it is a pain that you cannot explain but my son gives me more joy than anything else in the world. When he hugs me, smiles, and says Mom, my heart melts.

I am sorry to go on and on. I am just feeling awful.

Thank you.

Sincerely,

BridgetPlease contact mito-owner with any problems or questions.

[Guest guest]

Bridget:

I just got back from a vacation in Mpls for Christmas time. There

are many types of people. Some who "think" they understand what you

are going through and others who feel it is so hard to have a special needs

child. Well, yes it does. This time around it was a little

more difficult with Leah because my mother lives in a townhouse and has

three levels of small steps to go up. And I'm only 4' 10" tall and

carrying Leah up from the basement to the third floor started to wear on

me. So it is difficult in many ways. We don't always want to

be reminded of that. My mother in law asked if there is a place for

Leah when she gets older. But.....she was saying it because she knows

how much we give to our children (we have three of them) and wants to see

us be able to go away once in awhile and not have to worry about Leah.

Because I don't think I could put her in an institution; at least right

now. It all depends on our situation when we are much older.

(my husband) and I had a peek in to the future when we were out for

dinner and saw a couple in their sixities and they had a son in a wheelchair

and they were helping him with his coat and getting ready to leave the

restaurant. The son was in his thirities. And and I looked

at each other and a part of us wanted to go over and talk to the couple

about what they do and how do they handle this. Even though

we don't have an official diagnosis on Leah either, we say suspected mito

and explain about the disease. You may not be up to explaining it

at that point to some one and may say a little later I will explain it

to you. There are times when you want to not think about the disease

and also you want to be a "normal" family at that point. Let your

other kids be the center of attention for a while. Some people are

like that; feel they are hands on. We don't have many medical issues

with Leah right now, so my mother comes and watches her while and

I go out. My mother in law in Mpls was feeding Leah her lunch and

before that playing with her and making her giggle. Each person is

different.

Some times you may need to be alittle blunt with people; such as your

friends and explain that Owen enjoys kids and understands about being with

them. If your other kids are invited, then Owen comes too.

You may need to talk to your mother in law in such a way about how much

it would mean to you and your husband, if she would ask about how did those

appointments go. Has she shown interest in the other grandchildren?

If not, then this is her and she only does things for show. And hey,

it's ok to feel awful. We all are there at one point or another in

our lives. Tonight we are going to some friends house for dinner;

we would have liked them to come to our place because Leah's equipment

is there, but I told , we are going to have to figure this out about

taking Leah places so we can do that. Sorry this went on so long,

but you aren't alone in this battle. It is any special needs child

that people have a tough time dealing with. Glad you can in many

ways. Tell Owen he is a unique child and so is your family.

Take care and happy new year and may 2002 bring some mild surprises of

how people react to Owen.

mom to Leah

Todd & Bridget Willis wrote:

Well,

I need some advice on two things that are really bothering me. First,

I should tell you a little bit about my son, Owen. He will be three

on December 30. He has global delay, (especially speech and language

and cognition; 8 month level) and mid-line hypotonia. He is very active,

lovable, and truly enjoys being with other kids. He is very gentle

and affectionate. Owen is believed to have mito, and at this time,

his metabolics doc is leaning toward PDH. That

having been said....... My

husbands best friend and his wife who have three kids of their own ages

5, 3, and 1 are having a large birthday party at a gym this coming

Saturday with 20+ kids invited. Including all of Owen's cousins,

all of our mutual friend's children, etc.... They did not invite

Owen. I am heartbroken. Owen loves to go to this gym, and our

"friends" know this. Owen does not realize that he is being excluded

but of course, my husband and I do. We know that as Owen grows he

will be faced with many obstacles and will most likely be made fun of etc...

kids can be cruel. We are worried about this but trying to prepare

ourselves for it. We were not, however, prepared for it to start

now and certainly not by two of our "closest friends". Owen is having

his 3rd birthday party there the very next day after their party, and I

did invite their children. I would not play tit for tat with children.

I am planning on saying something to our friends after the holidays.

Any advice?? I am so sad. Have any of you been through something

similar? Second problem,

.... yesterday we went to my inlaws to celebrate Christmas. My mother

in law is a person who pretends to outsiders to be a concerned grandparent

who loves her grandkids but the truth is that she is very "hands off."

She enjoys the attention she receives from others by saying she has a grandson

that is special needs. She never asks for Owen, never calls after his cardiology,

neuro, metabolic appointments... etc.. you get the picture. Yesterday

she asked me if I would have to INSTITUTIONALIZE Owen. She hinted

to this once before but this time when she got me alone she came right

out and asked!! I told her that Owen will never be institutionalized and

even if he progresses to a wheelchair vent,,, etc... that our home is his

home and that is where he will stay. Then when other relatives showed

up she said "Bridget, explain Owen's diagnoisis to everyone." She

knows we do not have a diagnosis. This is just a snapshot of many,

many times she has done and said things to me that upset me to the point

where I don't know how to deal with her anymore. I am going to see

her again on Christmas and I am sick to my stomache and cannot stop crying.

I love my son more than words can express. She constantly says "you

are going to have such a hard life with him" Cant people understand that

it is so hard to see someone you love sick and it is a pain that you cannot

explain but my son gives me more joy than anything else in the world.

When he hugs me, smiles, and says Mom, my heart melts. I

am sorry to go on and on. I am just feeling awful. Thank

you. Sincerely, Bridget

Please contact mito-owner with any problems or

questions.