Guest guest Posted January 29, 2000 Report Share Posted January 29, 2000 Dear , Thank you for your last email...it was truly wonderful. You worded it so gracefully. I guess I am a bit passionate about this subject and it sometimes shows, lol. In the poem " Welcome to Holland, " Pearl, compares a mothers story of what it is like to live with a handicapped child....she explains what it is like planning your whole life to go to Italy...you plan for it and prepare for it but when the day arrives your plane lands in Holland. All your friends are in Italy, where you had planned to be....and the pain of that is very real. But Holland is a beautiful place and you learn that it is not so bad...my point with all this mumble jumble....I want my sons to grow up with a good emotional balance that is, being little boys with light brown hair, brown eyes, can draw, can swim, tell jokes, and who refers to his PID as " yeah, I have that...I get IVIG and sometimes get sick, and that's that " and accept that and be OK with that, like accepting going to Holland verses Italy. We never allow people to refer to him as the boy with the " PID " or the " sickly one " or the one with the rare disease...I always correct that. We do not put all our focus and attention on the PID, we address it as we need to. Part of how we are preparing him for that is by not " keeping him thinking that he is always SICK " .......we address the day to day stuff that we need to and have to and we can let some of the other things go (that can be left alone). We do not run after every little complaint or try to address every sniffle, or complaint...some things are normal to have and when it comes down to it we ask ourselves what is going to be accomplished by agreeing to this test and that test. I for one, was told 3 years ago that needed the Nissen...trust me when I say, he needed it when he had it. I researched and and explored our options before jumping on the band wagon and agreeing to do it. I was the same way with IVIG...I think I went for more opinions to be convinced as I was so against it...I needed to know with certainty that my son needed such a treatment. I have gained much respect from our doctors for being the way that I am. They know that when I call, there is a real medical problem and always get right back with me. They have learned over the years that I will always be my child's best advocate. Anesthesia and sedation are so risky and Mark's doctor and I have discussed this subject so many times...as to how many parents will have elective procedures without weight the risks of the anesthesia or a side effect of a medication, etc. Look at the mis-use of IVIG, there is a real problem there. I believe it is healthier to learn to live with some things and treat the things that really need attention to. I don't chase down every diagnosis. I certainly do not want either of my children to grow up and know nothing but illness, medical tests, drug after drug, blood draw after blood draw. They are not an ILLNESS or A PID or a DISEASE...they are children..who can draw, and laugh and bring many smiles to those who know them. I want them to be well grounded so if and when a difficult time comes in their life with their health, they can address it and deal with it and not allow it to consume them or become them. This type of thinking I believe (as does our doctor) will keep them healthier in the long run. Again, thanks for sharing your thoughts. Autumn mom to Mark and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2000 Report Share Posted January 30, 2000 Autumn: Thanks for stating how most of us feel about our children, and wished that they learned to lead as normal a live as they possibly can, Alissa is out on her trampoline, one of my co-worker's said it was dumb to get it for her because of how dangerous they were, the immunologist thought it was a great idea, God BLess, annette and alissa > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: to all >Date: Sun, 30 Jan 2000 10:08:36 -0500 > >Autumn: > >Thank you. I thought that was a beautiful way to put it. Thank you. > > > Re: to all > > > > From: Autti@... > > > > > > > > Dear , > > > > Thank you for your last email...it was truly wonderful. You worded it >so > > gracefully. I guess I am a bit passionate about this subject and it > > sometimes shows, lol. > > > > In the poem " Welcome to Holland, " Pearl, compares a mothers story >of > > what it is like to live with a handicapped child....she explains what it >is > > like planning your whole life to go to Italy...you plan for it and >prepare > > for it but when the day arrives your plane lands in Holland. All your > > friends are in Italy, where you had planned to be....and the pain of >that >is > > very real. But Holland is a beautiful place and you learn that it is >not >so > > bad...my point with all this mumble jumble....I want my sons to grow up >with > > a good emotional balance that is, being little boys with light brown >hair, > > brown eyes, can draw, can swim, tell jokes, and who refers to his PID as > > " yeah, I have that...I get IVIG and sometimes get sick, and that's that " >and > > accept that and be OK with that, like accepting going to Holland verses > > Italy. We never allow people to refer to him as the boy with the " PID " >or > > the " sickly one " or the one with the rare disease...I always correct >that. > > We do not put all our focus and attention on the PID, we address it as >we > > need to. Part of how we are preparing him for that is by not " keeping >him > > thinking that he is always SICK " .......we address the day to day stuff >that > > we need to and have to and we can let some of the other things go (that >can > > be left alone). We do not run after every little complaint or try to >address > > every sniffle, or complaint...some things are normal to have and when it > > comes down to it we ask ourselves what is going to be accomplished by > > agreeing to this test and that test. I for one, was told 3 years ago >that > > needed the Nissen...trust me when I say, he needed it when he had >it. >I > > researched and and explored our options before jumping on the band wagon >and > > agreeing to do it. I was the same way with IVIG...I think I went for >more > > opinions to be convinced as I was so against it...I needed to know with > > certainty that my son needed such a treatment. I have gained much >respect > > from our doctors for being the way that I am. They know that when I >call, > > there is a real medical problem and always get right back with me. They >have > > learned over the years that I will always be my child's best advocate. > > Anesthesia and sedation are so risky and Mark's doctor and I have >discussed > > this subject so many times...as to how many parents will have elective > > procedures without weight the risks of the anesthesia or a side effect >of >a > > medication, etc. Look at the mis-use of IVIG, there is a real problem >there. > > I believe it is healthier to learn to live with some things and treat >the > > things that really need attention to. I don't chase down every >diagnosis. >I > > certainly do not want either of my children to grow up and know nothing >but > > illness, medical tests, drug after drug, blood draw after blood draw. >They > > are not an ILLNESS or A PID or a DISEASE...they are children..who can >draw, > > and laugh and bring many smiles to those who know them. I want them to >be > > well grounded so if and when a difficult time comes in their life with >their > > health, they can address it and deal with it and not allow it to consume >them > > or become them. This type of thinking I believe (as does our doctor) >will > > keep them healthier in the long run. Again, thanks for sharing your >thoughts. > > > > Autumn mom to Mark and > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2000 Report Share Posted January 30, 2000 Autumn: Thank you. I thought that was a beautiful way to put it. Thank you. Re: to all > From: Autti@... > > > > Dear , > > Thank you for your last email...it was truly wonderful. You worded it so > gracefully. I guess I am a bit passionate about this subject and it > sometimes shows, lol. > > In the poem " Welcome to Holland, " Pearl, compares a mothers story of > what it is like to live with a handicapped child....she explains what it is > like planning your whole life to go to Italy...you plan for it and prepare > for it but when the day arrives your plane lands in Holland. All your > friends are in Italy, where you had planned to be....and the pain of that is > very real. But Holland is a beautiful place and you learn that it is not so > bad...my point with all this mumble jumble....I want my sons to grow up with > a good emotional balance that is, being little boys with light brown hair, > brown eyes, can draw, can swim, tell jokes, and who refers to his PID as > " yeah, I have that...I get IVIG and sometimes get sick, and that's that " and > accept that and be OK with that, like accepting going to Holland verses > Italy. We never allow people to refer to him as the boy with the " PID " or > the " sickly one " or the one with the rare disease...I always correct that. > We do not put all our focus and attention on the PID, we address it as we > need to. Part of how we are preparing him for that is by not " keeping him > thinking that he is always SICK " .......we address the day to day stuff that > we need to and have to and we can let some of the other things go (that can > be left alone). We do not run after every little complaint or try to address > every sniffle, or complaint...some things are normal to have and when it > comes down to it we ask ourselves what is going to be accomplished by > agreeing to this test and that test. I for one, was told 3 years ago that > needed the Nissen...trust me when I say, he needed it when he had it. I > researched and and explored our options before jumping on the band wagon and > agreeing to do it. I was the same way with IVIG...I think I went for more > opinions to be convinced as I was so against it...I needed to know with > certainty that my son needed such a treatment. I have gained much respect > from our doctors for being the way that I am. They know that when I call, > there is a real medical problem and always get right back with me. They have > learned over the years that I will always be my child's best advocate. > Anesthesia and sedation are so risky and Mark's doctor and I have discussed > this subject so many times...as to how many parents will have elective > procedures without weight the risks of the anesthesia or a side effect of a > medication, etc. Look at the mis-use of IVIG, there is a real problem there. > I believe it is healthier to learn to live with some things and treat the > things that really need attention to. I don't chase down every diagnosis. I > certainly do not want either of my children to grow up and know nothing but > illness, medical tests, drug after drug, blood draw after blood draw. They > are not an ILLNESS or A PID or a DISEASE...they are children..who can draw, > and laugh and bring many smiles to those who know them. I want them to be > well grounded so if and when a difficult time comes in their life with their > health, they can address it and deal with it and not allow it to consume them > or become them. This type of thinking I believe (as does our doctor) will > keep them healthier in the long run. Again, thanks for sharing your thoughts. > > Autumn mom to Mark and > > --------------------------- Quote Link to comment Share on other sites More sharing options...
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