View Full Version : spin off of genetics question in Medical issues section...

March 14th, 2004, 11:22 AM
As I was reading the Genetics question, I realized that there were alot of emotional responses, so I thought I would post my reply here because I have nothing I can add to the genetics part BUT...the emotions that people were posting I can add to that........
WOW, you are all AWESOME. I have had a tough week with everything, How you guys know that I have been asking myself "WHY me" all week? I have been doubting that the things I do are "the right things" and feel as if there is something else I should be doing or I should be doing something different, it seems like everyrthing has gone wrong in all aspects of life lately. Seth is no worse than he was last week or anything like that.... I, to, am not going off the deep end but I am just needing to ramble off some of my own nonsence......I dont go to church but I DO beleive in GOD, lately Ive been wondering if "HE" wants me to go to church. Everything has been so stressful (more than normal) lately. I feel the need to explain myself about why I dont do the "church thing" I HATE when people want to know my life story (except you guys) because others wont understand and will need explinations about Seth and I am TIRED of explaining to people about the whys, when, hows, and wheres of Seths life. I am a private person (except on this forum :lol: ) and hate it when people act like they pity me or my family "oh poor, child has a rare disorder thats not cureable" It makes me feel like crap. Everytime that I have gone to church in the past that is how it has always been.
This new found Question of "will hearing a sermon help me realize what I am doing that gives us such "bad luck"?" I do realize that it is not my fault that Seth is the way he is but, as many of you have psted before, I to still ask "why" and "if there was something I did during my pregnancy with him that made things go wrong with his body". I know its because I want an answer and something to blame but,I am sure I will never find it.
Thanks once again for reading my blah blah blah nonsence .
I hope that I dont offend anyone by bringing up the Church and GOD issues.

March 14th, 2004, 12:00 PM
You don’t offend me Misty…not at all. And I too apologize if I offend anyone about issues of God and anger…I wouldn’t even say anger…but issues of perhaps “feeling sorry for myself or wanting to blame someone.” Those feelings come up quite a bit in my roller coaster ride.

I’ve suffered other emotions over the last 12 years as well… denial, depression, hopelessness, aggravation. These are all common in any family member who has a handicap child. While feelings of happiness, joy and peace are with me most of the time…the more severe emotions do creep in! If anyone on this forum can say that they have not had ALL of those feelings at some point or another, I’ll give them a cookie for being the exception.

My sister in law has read a few things I’ve written and she’s always saying, “you need to be a writer!” I’m not saying I’m a writer or have the desire to be one, but everything she has read has been about Kaity. Emotions run deep when I talk about her. I can pour my heart out and express feelings that I otherwise would not have shared.

That is what this forum is about. Every single one of us has emotions that are raging to get out. If a person is unable to open up to strangers, they can do it here while in the company of people who completely understand. There are no ‘strangers’ when you visit this place.

As far as blaming myself about Kaity’s disorder, I’ve never really done that. But I have blamed myself for having her. You see, my husband did not want to have children. I spent a year begging for a baby. My husband loves Kaity with all of his heart…as much as any Daddy can, but I still have guilt. He wanted to raise my oldest son (from a previous marriage) and that was all he wanted. He wanted to spend time together, just the two of us and I feel that I spoiled that for him. :(

He is now over 40 and I’m pushing that, and we’ve never really had a marriage or time together as a couple. We both know that we will eventually have that time, but we don’t want to give up our daughter to have it! Does anyone know what I mean? Then I feel guilty for even thinking about time together as a couple when our CHILD should be our main priority!

These feelings are absurd I know…and if he were reading here he’d probably kill me, but they are feelings I have nonetheless.

I’ve always been an open person. If I’m feeling sad, I tell someone. If I’m lonely…I come here. If I’m happy…I shout it out. If I'm angry, I just blurt out what's on my mind (my worst trait). There is nothing wrong with saying how you feel and it does my heart good to know you can find that ability on this forum.

As far as God, you will make your peace with him one day. You will here a special message or see a special event that will help you better connect with him. He’s already speaking to you through Seth, you just haven’t seen it yet. :angel:

Laura Brodie
March 14th, 2004, 02:05 PM
Misty,Jessica- I can understand/empathise with what you both have said!
I too don't attend a church Misty - I would be uncomfortable doing that but I do have a faith and it has certainly run deeper since having Will-He is unsullied-so real -he shows love all the time.Well unlike Jessica I'm not a budding writer! :lol:
I feel guilty about Dave's and mines time together -which ceased to really excist once Will was born -yes he too would kill me if he knew I was saying this :frown: He has 2 grown up kids and I already had Lily -why did we do this!!!-but I just have to look into my sweet boys eyes when he shout for me first thing in the morning to know why!
I also live with the fact, as you all do ,that this will probably 'get worse before it gets better' but how will it get 'better' when it means my boy will be gone :cry:
I visited a pyschic last week along with a hundred others!! Got no answers surprise surprise because I already know the answers, I just have to somehow learn to live with them Love and Hugs Laura

Sharon Cochenour
March 14th, 2004, 10:59 PM
I think we all need a :group . I was feeling a little sorry for myself this week. It was very busy and I had to keep dropping everything to take Andrew to appointments and tests. My husband leaves all of Andrews medical stuff up to me, an being MPS parents you know that is alot. He does however find time to do everything he wants to do and I am stuck with Andrew. I don't mean that in a bad way because I really wanted to have children. Because of that feeling I went through years of fertility treatments and then on the last treatment I was allowed to take I got pregnant for Andrew. :)
Because of all that and then the MPS on top of that sometimes it feels like Andrew and I are closer than myself and my husband. We have been through a lot in his short 6 yrs. My husband to would be mad at me if he ever got on the forum, but he doesn't and this is my little retreat.
I use to go to church, but have found it hard to handle Andrew. My youngest son can go to child care, but Andrew is too much for them to handle. We go on Christmas and Easter but there is usually more people then and he can't get out and run. I live in a small town and people ask me about him often.
I do pray every night and thank God everyday for giving me one more day with him.
Thanks for letting me vent a little.

March 15th, 2004, 12:17 AM
I'm sorry that you have to take on more burdens than you should Sharon. Want to borrow my cast iron skillet?? :frown:
My husband travels 3 weeks out of four. He's done the same job for the last 18 years that we've been together. But, when he gets that one week at home (sometimes two) he helps me do everything.

And I mean everything folks! Laundry, cooking, dishes, watching Kaity while I work... He is so special. :kiss: And YES I'm spoiled.

March 15th, 2004, 12:34 AM
I can't begin to tell you all how much better I feel after reading all of these posts!!! I am so glad that WE ALL have the same thoughts AND have a place to share them!!!
I too have been recently on a search for "a closer relationship to GOD" and boy has it been interesting!! I was brought up Catholic and have been all over the place in the last year searching for answers and acceptance but equally to no avail, I too think that we all have to come to a point where we just learn to accept our life the way it is and not search for answers to why we have it but to how better to appreciate it.

I also have recently been personally torn about issues not only relating to religion(which being Catholic has not been easy) to just dealing with my own personal emotional battles that come with these diagnosis's(not sure that's a word but anyway)
My son has ML and we have been told from the very beginning that there is no hope for ERT at all because unlike the MPS where they can create synthetic enzymes, my son's disorder affects the cell make up and there is no answer yet as to how to correct or fool these cells. We also were told that the risks for a BMT were far too great due to almost no compatibility in a donor UNLESS...
and this is where the conundrum really begins....
Unless he were to have a sibling donor, which in the BMT world; long story short means PERFECT MATCH.
Well, Zach is our first born and only child, no siblings. We could try to have another sibling, with a 1 in 4 chance of having another affected child( which we know that no two children share the same sympstoms and would be quite risky) or a 2 out of 4 chance that the child is a carrier( which by the way would not be a perfect match for Zach but would be a healthy child no less) or a 1 in 4 chance that we could have a perfectly healthy uneffected child who could be a perfect BMT match and a cure for Zach. :?

Still with me?...Now the question is.... why do we have another, because we want another child or because we need another child??????? My husband and I both were talking about having another just days before we got our diagnosis so we really did want to have more children and OBVIOUSLY would try to do whatever we could to help our baby escape further damage BUT and it is the BIGGEST BUT EVER..... what happens if we do decide to have another baby and we get to the point where they heaven forbid say "This child is affected". What then???
DID you catch the part where I said I was brought up Catholic??? One of my son's former therapists and I like to refer to this as "Catholic guilt"...we all seem to have it and I myself cannot possibly imagine having to make that unthinkable decision of terminating a pregnancy BUT at the same time I NOW know what an MPS diagnosis means and would not want to intentionally pave the way for another innocent baby to have to go through what could be worse conditions than Zach's.....

So, here I am back to the better relationship with GOD thing.
How can I honestly think GOD would want to have anything to do with me after having to even entertain some of these thoughts????
The only conclusion I have come to is that the only reason I keep on thinking them is because I Love my son sooo very much and want to help him in any way possible, isn't that why GOD gives them to us in the first place? So he gave me Zach and I love him and every thing about him and I suppose I would love another just as devotedly but I still don't know what to do.

Now, that is all the stuff I recently shared with my doctor begging :cry: her to just increase my medication(to which I feel very important to note that I am not at all ashamed of taking,IT WORKS!) a little bit to help me cope with my "teency bit stressful life" to which she set me up with a psychiatrist!!! :roll:

To which I decided, neither doctor nor God have the answers, we have to find them in ourselves first and just believe that we ARE and WILL always do what's best for our babies!!!! ...........Although, I must say that this place has MOST of the answers!!!!!! :D

SOOOOO......,Thank you so much to everyone here who always makes my crazy days and thoughts feel validated!!!!
VERY sincerely, Brenda Haggett
P.S. I truly hope that I have in no way offended anyone with my opinions, they are only mine and only I have to live with them and eventually answer to GOD for them! :P

Laura Brodie
March 15th, 2004, 03:12 AM
You have not offended me :) but what about pre-implantation diagnosis? you know where they look at the eggs for defects and reimplant the healthy ones? They will do this for Hunters in this country but maybe thats because its X linked? - possibly they can't do this for ML as the condition is different? As a very lapsed catholic myself I do understand the tensions with all these ideas too. :frown: Take Care Love Laura

March 15th, 2004, 09:10 AM
I’m sorry Brenda. That would be a very tough decision indeed. I’m sure there are others who’ve had to make the same choices.

Me? I was lucky that he let me have one. :D If Kaity had been my only child I think I may have shared the same feelings though. A few years ago I thought about having another baby, but only if I could assure he or she would not have Hurler's, but then the thoughts would always pass.

I hope you are able to come to a decision that is right for your family. We will support whatever that decision may be.


March 15th, 2004, 10:44 AM
First I want/need to say (I am sure I have said before) I LOVE THS FORUM.
To be honest I was alittle afraid Jessica might kick me off of the forum for bringing up the "God" issue. And after I posted I started feeling like "if I get kicked off then I guess that it will once again be only my husband and I to deal with stuff alone, we have done it before we can do it again" But as you all know, being on the defensive ALL the time is an MPS/ML parent trait. You have all made me feel at ease, Church can be a touchy subject for some people, I was also afraid people were gonna judge me for not going to a church, and again you all (the ones who have replied anyway :) ) have put me at ease with my feelings about being shut out from this great forum. I suppose when I talk to people who have been through what I have (and more) I shouldnt assume they may not understand my feelings or be like "everyone else" and judge me for my decisions.
Brenda, My husband was a religous studies major (comparitive studies) but grew up Jewish, He often compares my mothers way of raiseing kids with that of a catholic parent....lots and lots of guilt. I too am very bad about putting guilt trips on myself about anything, I think thats why I find it hard to do things for myself (because I could always be doing something more constructive like cleaning). Even if I have done my "bleach cleaning" that I do once a week (I bleach the floors, the sinks the walls etc...) I still feel like I should be doing something else besides sitting and doing nothing. As a matter of fact, that is a BIG issue between my husband and I, it is very hard to just sit and do nothing with him. Not because of him but because of my guilt, He is great and after 10 years of marriage I am still working on my own hang ups. And then I watch my sister (who has 3 kids, 11,8, and 2yrs old and divorced) work part time with CHEAP rent (through the housing department), mom pays her bills, she NEVER has her kids and on the weekends that she does have them they ALL 3 stay at my brothers house and she goes out and parties, gets her hair done, nails done, buys her self stuff all the time but very rarely buys her kids stuff. I wish I had the financial freedom to do 1/8 of the things she does. Even though I should not feel as if someones problems are any less than mine, when it comes to her, I do feel that way.
I do go bowling on Monday nights with 2 of my other sisters and I have fun so I guess I get alittle break. I would probably be going CRAZY :8): If I didnt have my bowling night.
So I :bow: you all for comforting me. You dont have to have the answers but "listening" helps 100%
Misty :) once again thanks for reading me rant :D

Sharon Cochenour
March 15th, 2004, 11:00 AM
Let's see, yes Jessica a cast iron skillet is just what I need. :) I'm sure that Barbara would like to take a turn with it. She came over this weekend to help take down the rest of the christmas decorations that he has been promising to help me with for 3 monthes, yes it is March.......
On second thought how about borrowing your husband? :D

Brenda, sometimes I feel quilty about me youngest son, because if I had known about Andrew's Hunters, I don't think I would have had another child, but I didn't and he is perfectly normal. I love them the same, but I love them different. I will probably always love Andrew differently. :kiss:

Anyway, have you ever heard about invitro fertilzation where they can test the embroys before they inserted? They would be looking for ML or MPS since you have a child with that diagnosis.
Just a thought. I work in high risk OB and the procedure is common, especially if you have a genetic disorder in your history.

March 15th, 2004, 11:02 AM
Well I can't say I have all the answers either, but I do have peace with a lot over the years. A little history on our family which is new here. My husband and I have been married 25 years this year. We had our first son who is now 21 after a few good years of marriage. We wanted 3 children. Steve our oldest turned out to be a moderately dyslexic young man, whom I ended up home schooing for 5th and 6th grade to build his self esteem back up after a cruel city school system and another private school system letting us down. That was all during a year of tough times while I went through 2 cancer surguries and 6 months of heavy chemo. Fortunately we found some good programs for Jr and Sr. high with the Cathloic school system by the time he was ready for those years.

For 11 years I never got pregnant, we never tried not to get pregnant, it just didn't happen. After the chemo the Drs tell me I will most likely go into pre-menopause since I was 36 years old. Well 11 months after chemo we had a great and unexpected surprise.. I became pregnant after 11 1/2 years. We were in shock, but happy at the same time. Jack is 4 years older than I and we figured by this time we would be spending so much more time together, Stephen was almost 12, and doing so well by then. Well we had Jesse who will be 9 this May, and as it is, he has Sanfilippo A. We originally thought maybe chemo had caused him problems before we knew he had Sanfilippo. But we eventually learned different. Chemo had nothing to do with it.

My husband is Italian/ Irish, and I am German./Scotch/English. So...no relation we don't think anyway :?

But I have been a beleiver in God all my life, not always aknowledging him when things are good, but yes always looking for his help when things are not.. :roll: Typical of most of us at one time or another I think.
Anyway I have learned over the years that God or I did not cause our children to be this way, (dyslexic or Sanfilippo) It's just the way of the world since the day of Adam in the garden. The devil does exist on this earth and he does as he pleases because Adam gave him the power to. BUT..... Thank GOD for Jesus, because I know that God sent him because he loves me and everyone else too. That he meets all my needs if I ask, but I know he wants me to think of him and talk to him daily in good times not just bad. He wants me to give him thanks for the good things each day. He gives me strength every day to do as I need to. He says he will not gives us more than we can bear. :whatthe?: I ask some days, how come I seem to get the maximum, can't I have a break.. :hug: But just then he shows me someone who may have it tougher than I do. Then I am so glad, that my troubles are little compared to someone elses. It gives me a heart to pray for others then, not just myself. God allows things to happen, he doesn't cause bad things on this earth. But he also gives us authority and power over the devil through Jesus Christ to make a better life for ourselves and friends. All through prayer to him through Jesus. He doesn't force his will on any of us, it's all our choice and the decisions we make to at on his word. :? So it is not my fault or yours that our children are like they are, it's circumstance of the world since long before our time. But God us given this precious little ones and parents who are capable of taking good care of them and loving them.

There are times when I look at the direction the world seems to be headed these days, I'm kind of glad that Jesse will protected from so much of it. :angel: He is really blessed in many ways that he won't have to deal with society the way we have too.

As for Jack and I, he is now 50 and I am 46 next month. We do make time for each other through our hectic days with a kiss as we pass, or an affectionate pat on the behind, :D or so little gesture that we still ove each other and are waiting for our next real time together. Our older son gives us a night a week to be alone whether it be at home or out. But he looks after Jesse for us so we can stay sane too, :Party: Then God Bless my mom of 78 years young, Jesse weighs almost as much as she does, but she also will give a night a weekend to go out to movies or dinner or a club whatever. So we have found time between the kaos.

Well I have rambled on long enough, but as parents we never dreamed we would still be raising children under 21 years of age at 50 and 60 years old, :D We wouldn't trade it for the world. Jesse has been more of a joy than we could have ever imagined. It's not always easy, but then when I think about the times thats he's smiling and hugging, sitting on the sofa laughing at who knows what when I'm trying to get him to sleep, or when he's running and yelling basketball, even though there's not a ball in site. He is so special, and when times are tough, I reflect back to my favorite last moment with him and know another is coming soon. :kiss:

Love you all,
Patty and Jesse

Priscilla Raftery
March 15th, 2004, 12:31 PM
Gotta get in on this one! I have always believed in and had faith in God, ever since I learned the song "Jesus Loves Me". I have never blamed God for Joey's illness, but my husband has. My husband was also raised Catholic (I am Protestant) but after the age of when his parents made him go to church, he got away from it. Even before Joey's diagnosis Jay used to actually become angry with me when I tried to get him to belive in God and get strength through Him. We've had our share of tough times before, during and since the Sanfilippo diagnosis. I think he was angry because he was jealous that I could find such a peace. Anyway, after we got Joey's diagnosis Jay had some pretty unpleasant things to say about God. Never, ever did I think this man would come around to being a Christian. I had no hope for him and even entertained the thought of leaving him if Joey dies. I know that when/if Joey dies before me, that all I will have is my faith for strength. If Jay tried to take that away or belittle it in any way, I would not be able to stand that. Having said all that, I always thought Jay wanted to find faith and hope but resisted it for some reason. He needed "proof". Well, last year I convinced him to go with the Youth Group from my church to a Snow Camp. They needed another male chaperone or the boys couldn't go.(I stayed home). Jay went very relunctantly. During the time there, a question was asked of everyone, kids and adults alike..."On a scale of 1 - 10, how do you rate your faith in God?". Jay said, "0". The kids were shocked and asked, "How can that be? You're our chaperone from church!" Jay said, "I'm just transportation". Later that night, Jay was seen all alone walking into the woods. The next day, the chaperone's had a meeting without the kids and Jay's answer of "0" was mentioned. A minister there started asking Jay some questions and Jay, who believe me does not shed tears easily by any means (anger is his emotion of choice), started to cry...in front of people he had never, ever met before! 25 people he had never met before! (He knew only three people there). Then, he started to talk...and open up...and say things that had been inside him for so very, very long. And the crying turned to sobbing, and he felt hands on him from people he didn't even know...and hugs...and words of love and peace from many, many mouths. When he left Snow Camp the following day, he changed his answer from "0" to "1 or 2". Since then he has been going to Family Ministry with me on Friday nights and church on Sunday's. If we miss either he has "church" withdrawal!He still has alot of questions and he hasn't changed his number to a 10 yet, but he's somewhere around a 7 or 8. I have seen God touch my husband. My church, although always having a ramp to enter, is not very big and there really wasn't room for Joey's chair. So they pulled out two pews to make room for a couple of wheelchairs. There is another family who attends with a son in a chair. I reccomend Lee Strobel's books...he is an investigative journalist and former atheist (sp?) and asks some tough questions about God. He is a Christian now. Our Friday night Ministry is now reading "The Case For Faith". Some great answers in there.
As far as guilt goes, I too, have felt guilty about giving birth to Joey. But I have never dwelt on it, it just makes me cry sometimes when I see Joey now and remember the little boy that he used to be.
I, too, know that someday Jay and I will probably be "free" to live a different sort of life together...travel, go out when and where we want, etc. But, at what price? Will we really ever be able to truly enjoy that life?...because it will mean that Joey is gone...I never look a day ahead of today. My daughter Blake can stay with Joey at night if Jay & I want to go out so that is enough for us. We're happy with that. I am starting some home improvements now. Before, it was useless because no matter what we bought or decorated, Joey would destroy in record time! :lol: But I said to Jay, I don't want to wait until Joey is gone because then it would be like, ok, we can do this now 'cuz Joey's not here and I don't think I could bear that. The improvements probably would not be done under those circumstances. But Joey has slowed down enough that he isn't destroying anything anymore, so now is the time to fix things up a little. The way in which we paren'ts of MPS children have to think is so out of sink with "normal" and it is just so sad and unfair at times.
And lastly, (unless I go back and read your posts and realize I missed something I wanted to comment on :? ) I want to say that God loves you all and no one needs to worry that He might not be with you, because He most certainly is. Priscilla

March 15th, 2004, 01:06 PM
I think its interesting how much alike we all are in a different kind of way. When Moriah was diagnosed I cryed out to and at God. How could he do something like this to a child, how could he let this happen. For many months I greived and was angry at everybody and everything. I blamed everybody, including myself for what was happening and what would happen. It took me a long time to realize that being bitter would not change things. I was so broken hearted that my perfect world was going to be turned upside down. Cindy and I had the perfect life, two great kids, a new house, a great business. I slipped into a poor me attitude. I was still in these stages when I found this forum. I started to heal thanks to Jess and having coffee with Jess's Mom. God woke me up and reminded me that he would be with us no matter what. Through this horrible disease Moriah has touched more peoples lives than ever thought possible. Moriah has two Ministry programs (Moriahs Bears of Hope, Moriahs Blankets of Love). Bears and blankets have been distrubutied in all 50 states and two countries to remind those that are down that God Loves Them . Countless times she has been on TV, Newspaper and several other honors.

I have been so richly blessed with a beautiful daughter whom has taught me so much about unconditional Love. I thank God everyday for her.

Moriah was diagnosed on April 5, 2000 and as I reflect back on the last four years and remember a thought I had and have hung onto. (Please don't be offended by what I'm about to say)

Its not her dying that scares me, its the living and how much she will have to endure before God takes her home.

When Moriah was still able to talk I can remember her saying I Love You Daddy and I also remember the last time she was able to say I love You. (She says it in her smile and eyes now.)

I made a promise to Moriah an God that I would do whatever it took to keep her happy and painfree until she walks on those streets of gold someday.

Sorry for the rambling.....


March 15th, 2004, 03:36 PM
I just thought it only right that I again thank Jessica for creating this wonderful family that we all have now here!!! Without this place, I think we would all be lost but with this place, I think we will all just make it!!! :) God Bless you all and an extra special thanks to Jessica :angel: for creating this wonderful Family!!!! :kiss:

VERY sincerely, Brenda Haggett :)

March 15th, 2004, 07:53 PM
I'm never offended by a discussion of God, no matter what the views. Before my sons I was a casual church goer. If I wanted to sleep in, I did. I joined my church in high school, but I REALLY disliked the pushiness to join every project and etc. When I got some money stolen from me while at a church function, I became less commited. I still wholely believed in God, just not fully in the church anymore. I started finding a closer relationship after my oldest was born. Two weeks of straight seizures in a 7 pound six ounce little human will lead you a long way.

I found God is always with me. I may not converse everyday about every little thing, but He gives great hugs when waiting in a hospital surgical waiting room or sitting next to my father's bed as he died of lung cancer. If I listen, He guides me. In other words, church is a building. Your faith can be strengthened by joining with people of like faith. Or, it can also be torn down. I just resigned after 5-6 years of being a Deacon in my church. I was tired of banging my head against the other insular leaders. I decided I was not coming to church in the right frame of mind to worship. I will still go, but I will now go because of my relationship with God and not out of duty. Church is not the faith--Relationship with God is the Faith.

I found once I explained to our church members what the boys were diagnosed with and their abilities, a lot of questions were ended and the boys accepted for the big-hearted, loving guys they are. Chris usually gets big smiles and healthy joking around. Even when a hymn catches his fancy and he hums or sings very loudly; Or when he says "we're out of here" at the end of the service.

I have heard of Catholic guilt. I think in this case it is not all "Catholic". Decisions are a personal element. No one decision fits all circumstances or families. If you decide one way--That way is right for you. The other options may be right for someone else. God has the Love for us no matter how human we get. I read once that grace was not God accepting our repentance and belief in the sacrifice on the cross, it was a gift already given by God that we had only to accept and believe. No one is too low or too high. We are all unworthy, but He loves us anyway.

"If a man has done his best, what else is there?"--General George S. Patton.

The Rea Family
March 15th, 2004, 08:52 PM
I've never been a religous person either.
I went to Church as a child, and now, my oldest 2 go to Church while I stay home with Christopher.
His illness and impending diagnosis have gotten me to question whether or not I believe in God.
While I think it has made me believe, it has done the opposite for my husband, who says that if God exists, then why is Christopher going through this.
I'm so glad that I found this forum, because although my husband is a wonderful help around the house, when I get emotional, and need to talk, he completely shuts down.
We have absolutely no family here, I am estranged from my parents, even though they only live about a mile away.
It if wasn't for this forum, i'd probably go insane.
Thanks again for being here.

Barbara Pryor
March 15th, 2004, 10:38 PM
One thing that really ticks me off is how Sharon's husband really needs to have that frying pan up against his head, and more than one time. :lol: He doesn't want anything to do with Andrew until it brings him some kind of attention. Don't get me wrong I love Andrew more than anything on this earth and would do anything for him but his father needs to help also. I would much rather watch him and know that he is taken care of and not just let run around the house. He doesn't want to watch him or Patrick and whines about it but, he wants the "benefits" of having a sick child--the attention and sympathy. He wants to come to the conference this year because it is at Disney. He won't help out with him at home on a daily basis but he want to go far away from home and try to take care of him. He makes me so angry I could just :order: him on his head and make him wake up to reality.

Priscilla Raftery
March 15th, 2004, 10:51 PM
Carrie, I understand your husband's question about if a God really does exist then why are our children going through this. But, there is a God and there is His enemy! His enemy is the evil. But only God promises paradise after this life, where our children will be so very perfect and suffer no longer. Satan does not promise that...only more of the same, or worse. If nothing else, it is so much more of a comfort to believe...I pray your husband finds peace. Priscilla[/i]

March 16th, 2004, 10:24 AM
Misty said: To be honest I was a little afraid Jessica might kick me off of the forum for bringing up the "God" issue.
I’ve been keeping this forum up for four years now and I’ve never ran anyone away! Well, I take that back, I did have some 'satan spawn' come on to the other forum making fun of our kids. That’s when I made it a ‘private’ forum. :order:
Religion and politics can get hairy when brought up in a on-line discussion, but I’m not worried about this one in the least. Since I’ve posted on many forums over the years, I’ve learned to keep this saying in mind. (I changed the wording to better suit a family forum) Opinions are like buttholes, everybody’s got one. :D

If you keep that little saying in your mind, it won’t really matter what others say or how they feel, even if it differs from your own ideals. It is their opinion and their feelings and each of us have our own. Others can try to sway you in their direction, but ultimately it is still how you feel that is important.

Sharon said: Let's see, yes Jessica a cast iron skillet is just what I need. :)
You know, Ohio is only a few hours from me. I have body guards too! A whole department full. :D
“On second thought how about borrowing your husband?"
Too funny…I’m sure he wouldn’t mind! I’m always telling him if he leaves me make sure she’s got money and can do dishes. We’ll take off to the Bahamas and she can keep house. :D

Patty said: I ask some days, how come I seem to get the maximum, can't I have a break.. But just then he shows me someone who may have it tougher than I do.
Thank you for the wonderful and inspiring post Patty. I too can understand how you feel. It never fails when I think I have it bad, I see someone in much worse condition than my family! The Holland family (and many others) are prime examples! I don’t know how they do it with more than one MPS child.

Priscilla wrote: I want to say that God loves you all and no one needs to worry that He might not be with you, because he most certainly is.
Priscilla, my fellow coconut gatherer…thank you for your lovely post and words of inspiration. You have always been such a joy to be around.

Art wrote: Its not her dying that scares me, its the living and how much she will have to endure before God takes her home.
Those are my thoughts exactly! I know my daughter will be going to a better place, it just kills me that she has to suffer before she gets there. Thank you Art for the wonderful words of wisdom. I’m not sure when you had coffee with my Mom, but I’m glad she was able to help you…wish I could have been there! I haven’t spoken to my Mom in over a year. Whole different story…one of which I’m not ready to share. But, let's just say...we're not talking. :frown:

Brenda wrote: I just thought it only right that I again thank Jessica for creating this wonderful family that we all have now here!!!
Thank you Brenda…you are all that and a bag of chips. :D

Darla wrote: Church is not the faith--Relationship with God is the Faith.
The best sentence I’ve heard thus far! Thank you for sharing with us Darla!

Carrie wrote: I'm so glad that I found this forum, because although my husband is a wonderful help around the house, when I get emotional, and need to talk, he completely shuts down.
My husband was like that in many ways! It’s the man thing and talking about how they feel…like Art did in his post…WILL COME!! They just have to first drop the “I’m the strong Daddy” wall. He will drop those walls one day…and be ready when he does! My husband cried all night one night, and I mean ALL night. The reality of the disorder had hit him. It took about three years to get to that point, but he’s totally different now.

Barbara wrote” He doesn't want anything to do with Andrew until it brings him some kind of attention. I’ve known a few in Kaity’s life that’s been like that. Maybe you and I can do a sneak attack on him when Sharon’s not lookin’. Ever dressed in camo and carried launch grenades? Awww...what's it matter...just stay behind me and stay low. :8):

The Rea Family
March 16th, 2004, 12:39 PM
Thanks so much Pricilla.
I too hope that my husband is able to find peace, and come to terms with this.
Pretending it isn't happening, doesn't make it go away.
Thank you too Jessica.
If your husband was able to come around after 3 years, maybe there's hope for mine.

March 25th, 2004, 06:12 AM
Only in this group would I find someone else with their Christmas stuff still up! :lol: Well anyhow the big tree came down a week after Valentine's Day so the neighbors could stop wondering! But the other stuff is still up. I wanted to pack it away nicely this year and sort it, repair things and test the lights. I'll have it done before the Easter Bunny shows up!

I'll fess up and say that Katherine is here because we hoped for a BMT for William. We found out in my eighth month that they were'nt doing BMT's for Hunters anymore, well Duke still was but it wasn't recommended anymore by the folks at the University of Minnesota. The geneticist had assured us that by the time we had 10 kids we would certainly find a match for William so we went into it expecting to end up with a big happy family. Instead we got our sweetie with her own set of problems - only one kidney and mildly dyslexic. She substitutes short words like an with other short words like out. It's very disruptive to her reading flow but the school doesn't provide help for kids on the honor roll. I'm just mad that I diagnosed her, not one of her teachers. She has been through four teachers and a reading specialist in second grade and none of them caught what her problem was!!!??? I listened to Henry Winkler talk about dyslexia one night and realized that might be what was causing my heartbreak with trying to get her to read. I found her problem described right away on the internet. I am very disappointed that it took so long to figure this out and worse that I, with no training in education at all was the one that figured it. It is a very common dyslexic problem and should have been caught by "the experts"! Sorry for the rant

Lou matured within days of William's diagnosis. If you wave a frying pan at him, he will cook you something in it. He does everything except clean the bathroom and the Kitty litter boxes. He used to keep track of whose turn it was to change William's diaper but he always took his turn. Once William was diagnosed, all that sort of thing just seemed silly. He calculated that over the years we have changed at least 10,000 diapers not counting Katherine's!

My neighbors are Catholic and they invite us to differnet church functions. I was mad at God for a few years and wouldn't go in a church but I finally had to go into a church for a wedding and I made my peace with Him during the ceremony.

We don't have anyone to watch William. It's partly our fault. We have separation anxiety and squeamish relatives.

I do manage to get out with the neighbors to movies, and we have a book club discussion over dinner at local restaurants. Lou is happy to watch William as long as I bring him home a dinner.

It's great having this forum Jessica, but now I think I better get back to messing with my Christmas stuff before I get some unwanted help from people who think at this point I should give up and throw it in boxes willy nilly.


March 25th, 2004, 09:47 AM
Too funny Chris! :lol:
Good luck with the Christmas stuff and I'm happy that you have a husband that helps out around the house! :bounce:

March 26th, 2004, 02:08 AM
God loves you, no matter where you worship him. Church, home the back yard. As long as you continue to pray, believe, and grow in your faith.

March 26th, 2004, 10:22 AM
I was angry with God for a long time. I too, do not go to church. I just feel that that is not a place for me right now. Maybe, I am still mad at him for what Cristian is going through and how much suffering he is enduring. How can he let him go through that I ask myself? How? Why? I wanted a big family, now I am so afraid. I want another child and I can't. I have three total and I know that some day thier will only be two left. I want more. I want Cristian here forever. That is so sad to think, but I think it everyday!! Church doesn't help me right now, and I do pray to my self for others, but that is still in the back of my head. My husband helps somewhat, but he too doesn't go to the appointments or doesn't read here. He rather tend to himself. If it weren't for what Cristian is going through I'd probably be gone by now. I can't afford being on my own financially with three kids. He changes diapers and carries him to the shower to bathe but other than it is just me. By myself!! If he needs to go to Dallas then he will take me, because he sees how serious it is getting, but why did he wait to see it get so bad? I needed help when he was first diagnosed when he was running around throwing and breaking things. He never wanted to watch him and only wanted to get away by ourselves and I thought was so selfish, but that is overwith now and hopefully he willsee how hard we mothers work with our kids and that we need help.


March 26th, 2004, 01:51 PM
My husband too, does not pitch-in much with the medical care of Ty, or the day to day care really. Jim Loves Ty and all our children with all his heart, and would probably take a bigger roll if he had to, but I think he feels I am on top of things. He has been to maybe 5 out of 50 or 60 doctor appts. and tests. He has only been at one of the LPs. I had to argue with and convince him something was not right with our baby for over a year, :? he agreed Ty had a few little issues and wasn't like our other children, but he was not around enough to really see it was bigger than that. Still today- he is reluctant to go to Duke for genetic testing- part of him thinks the Shunt will fix everything and there is no more to be worried about. But down deep I think he knows I'm right, he just is not ready to face it, because he is a fixer by nature and this, he may not be able to"fix".
I want to say it's a man thing, women are the nurturers- but I can't, because of the example Art, and Steve, and Austin's Dad, and Jacob Horton's dad, Max Forand's dad ( and the many other dads I have forgotten to mention) have set for us. Men can be just as nutruring as women. I think it partly has to do with the "roll" your husband plays in the family unit. My husband for example is the bread winner, the worker bee. He feels that his job is downtown, and mine is right here. in a way this is true, however his job is over when he leaves for the night and I'm on call 24-7. When he is home with the kids and I am out, he considers himself the "babysitter", "oh, I have to babysit for you tonight?" Like these 4 children are mine alone and he is just some innocent bistander, willing to change an occasional diaper and "babysit" once in a while. But I must say for him that he has grown considerably in the many years we have been married, and made the biggest strides in the last few months. Recently he "babysat" the kids for the whole weekend! without complaint! Also on our recent spring break, he took it upon himself to play a bigger roll in the day to day care of the kiddos, and really allowed me some time to relax too. So, there is hope.
When you are out there fighting for your childs life, and you know it in your heart that is what you are doing, Then you find yourself fighting with your spouse, your mother, your inlaws, your friends- because none of them know or understand what is really going on. Well it is so draining. :cry:
That is why this forum is such a haven for most of us. When someone finnally believes you, encourages you to go on with your fight, understands your situation. Well, speaking for myself, God and this forum(which I'm sure God guided me to) have been the reason I was able to keep fighting for Ty- at least for his hydrocephalus. I don't know if I ever would have made it to Dallas without you all. Ty might still be suffering. Thanks everyone. And a special thanks to Jessica- you are definately doing God's work :angel: with this forum.
Hugs :group

One more thing, it took me a while to come to this understanding; I do not believe God hands out trials and suffering to us, His children. I believe there is evil and sin here on earth. I believe these evil forces (satan and his many) throw these horrible situations at us, God's children, to drive us away from our Creator, because the worst kind of pain for satan is when we believe in and have faith in Jesus Christ. I do believe God uses our trials to help us grow in our faith and to bring us closer to Him, and that He listens to and answers our prayers, in His own time, because He has a plan. I have one example;
If I hadn't had such a difficult time with the doctors regarding Ty's hydrocephalus, I would never had done so much research on the subject. I would never have found Dr Goodrich and Dr Swift, because I wouldn't have needed to look for them. I probably would not be persuing genetic testing yet, because the Hydro has been the biggest problem to date, and all the other infections, reflux, developmental delay can be overlooked and written off as fairly common childhood illnesses- especially with a preemie of an older mother. His "dysmorphic features" are so mild, atleast to me, I probably never would have noticed them.
So now I am most likley ahead of the game in finding a diagnosis for Ty (even though it doesn't feel like it) I have been able to lend my support and experiences to several other mothers going through the same trial. And I have lbeen able to refer several children to a fabulous Neuro surgeon, who might not otherwise have found him. So, even though God did not make Ty sick, He took Ty's situation, and our prayers for Ty and instead of just answering one prayer for Ty's recovery, He used our experience to benifit others too.
At least that is the way I like to look at it.

Laura Brodie
March 26th, 2004, 03:37 PM
I would just like to say that my hubby 'Dave' is human!! He really tries to help but a lot of the problem is I won't let him!!! :roll:
How many of us have left our kids and then come back to question have you done this? what did he eat? did you give the meds at two?
We recently attended an MPS coference over here! Dave didn't want to go into the lectures/sessions he stood at the bar!!! :Party: partying all day long with some other dads!
I have had that many comments and Emails since about what a good time they all had from their wives/partners and most importantly how supportive Dave was!! He's a real carer person :kiss: especially to some who are recently diagnosed.
Some of the guys could hardly string a sentence together they were so in shock! :cry:
None of these men really wanted to be there but found their own way of dealing with it!
and yes sometimes I still think its hopeless but we've come a long long way in 4 yrs. I think often we 'gender men 'not to be able to help because we are copers! :?
Now I'm even willing to come to florida and leave Will for a whole week!! with Dave!!! Its all a growing experience! Love Laura

March 26th, 2004, 04:16 PM
I just want to say this forum has changed my life. I just became a member last week. I have been struggling for quite a while now with my emotions and having no one to talk to. I stay home all day with my son while everyone else works and just about the time they are all coming home I have to leave for work!!! If I had known all along that this place existed I would not have waited to become a member!!! Sure I can talk to anyone about the way I feel but they will never truely understand. I am just now beginning to walk the path that most of you have been on for a while now. I am so excited that finally someone will understand why I can be perfectly happy one minute and crying like a baby the next. I am not quite ready to let all of my emotions flow (I'm a little shy). But I have been reading post all day everyday (or as the Little Mr. will let me) and I am sure this place is just what I have been looking for.


March 31st, 2004, 01:36 AM
I am really glad you found us too! Your "little Mr." is so adorable, and whenever you need to talk, we are here. :group
Kim and Ty