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#811630 05/21/02 11:01 AM
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Hi all,<p>She has survived the first two surgeries quite well. They are having to rebuild her intestines which had multiple anomalies due to her birth defect. She is off the ventilator after being on it for about two weeks. I saw her at the hospital on Saturday. Mr. J was out of town visiting Precious. (He took his mother along as a babysitter--for him, not Precious).<p>I took the boys with me. They can't go into the NICU, but there is a large Ronald McDonald playroom just outside the NICU and PICU units so they were content to play there while I went in to see Rachel.<p>It was so sweet to see her off the vent. My sister was finally able to hold her. She is feeding two teaspoons of breast milk every three hours. She had been awake quite a bit on Friday but on Saturday when I saw her she was very sedated and wouldn't wake up. She even took her bottle in her sleep. She had had stitches removed and they had given her morphine.<p>Last night my mother called. The genetics tests are back. Rachel has cystic fibrosis. Since she has had such a severe and early (prenatal) expression of the disease it looks like her life is going to be short. Some CF patients are making it into their 20s now, but I don't think that she will.<p>CF, who knew? There has never been any in our family--and we know history 4 generations back. No early deaths, no sign of anything like this. <p>I accept the awful hurt in my life due to my H's affair and child. I am suffering the consequences of his sin. I have an explanation for what happened. I have no explanation for how Rachel got sick or why God would allow this to happen. I hate everyone. I am furious at God for not preventing this, for allowing another tragedy to smash my family again, for more hurt in my heart which feels like it has absorbed all it can. I don't want to stretch further, I don't want another "growth experience." I want peace and happiness. I don't want to see my sister watch her child die.
I am angry at Mr. J for being somewhere else when I needed him, for being with the child he created of his affair. I know that we decided together to persue visitation, but I wish he had been smart enough to cancel it when this baby was born so ill.<p>The hideous thing about grief is that it makes you revisit every other loss in your life. I hate it. <p>MJ

#811631 05/21/02 11:10 AM
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I will pray for your niece and all your family.<p>I know what you mean. I feel as if my life once was good-now, with what my H has dealt us with his actions, it is not as good. I am not the same, I don't love him the same, I don't feel loved, and I don't feel treasured and I feel ugly and humiliated.<p>Grief is never but a brief inch away for me,and tears come easily.<p>I don't like feeling this way.<p>I am with you, MJ.

#811632 05/21/02 11:13 AM
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MJ,
My thoughts and prayers are with you and your sister's family.<p>Tina

#811633 05/21/02 11:46 AM
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MJ,<p>I am so sorry to hear about the CF for Rachel! I don't know why God does these things, but He always has a reason. We usually just don't/won't understand till we can ask Him face to face! I pray for continued healing for Rachel, and understanding for the rest of the family! Who knows, maybe she will be the child that they find a cure for CF! She has already shown that she is a fighter and a survivor!<p>Hugs and prayers for the entire MJ family!!!!!<p>Love,<p>Tigger

#811634 05/22/02 12:24 AM
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(((((((hugs))))))))))<p>I'm praying for you MJ and for Rachel and for your family...<p>It has been my belief that God had always intended His good plans and purposes for our lives, but since the fall of Adam and Eve, the devil has wreaked havoc with Adam's offspring throughout the ages.<p>The Bible speaks over and over again at how precious children are to Him, how He delights to give us good gifts, how He wants to give us HIS PEACE, even admist all the storms life throws at our way. The Bible says that in this world we will have trouble, but to take heart as the Lord (Jesus) has overcome the world. I do no even pretend to know why God allows certain things to taint our lives and to come in and wreak havoc with us.<p>I do know that I trust and believe the One who loves me and "Knows the plans He has for me, plans to prosper me and not harm me, plans for a future and a hope". (Jer. 29:11)<p>I was praying and talking with my prayer Partner and best friend the other day and it hit me, that our OC was known by God before the foundation of the world...God isn't bound by our timeframe and He knew in advance, how OC was to come into being and how I would have to endure this pain. I was angry at God for a while, a good long while for allowing this in my life, but then I stopped and realized also.... If He didn't think I was strong enough, He would not have allowed it and it brought Mr."T" to his knees and consequently to salvation...would I have endured it, if I knew what it would have entailed? I would have told God to forget it, if I knew in advance.<p>I know this, regardless of whether Rachel lives a short time or for a long time into her 20's...I know I serve a God who Heals. I am believing that God can do a miracle in Rachel's life. I don't presume to know how God will use this, but I know that it will touch many people's lives.<p>I finally had to accept what the Bible says about God in Isaiah, "For My thoughts are not your thoughts and my ways are not your ways"...God works outside of our realm of understanding at times.<p>I know He is the God of all comfort and is nearer to you than your next breath. I know He's big enough to handle your anger and all your questions. He's there to hold you, even when Mr. J and even all of us aren't around to hug you and I know many of us wish we were near ya to hug and talk and pray and hope....<p>I'm always here...if you don't have my handle on yahoo and on aol messenger or my e-mail, feel free to e-mail Stacia_Lee...she has my info. and I'll tell her to give it to you if you need someone to listen.<p>I won't pretend that this is all "Yay God!" when it sucks...I won't patronize you and Romans 8:28 you to death....but I know our God is real and He hurts when we hurt and He cries when we cry. He's there for you. He loves you, He loves Rachel and He loves your sister and your family...He is still in control.<p>Hugs to you and I'll continue to pray for Rachel.
Twiisty [img]images/icons/frown.gif" border="0[/img]

#811635 05/22/02 12:45 AM
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What's the difference between me and God?<p>God never gets confused and thinks he is me. [img]images/icons/wink.gif" border="0[/img] <p>MJ

#811636 05/21/02 01:04 PM
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MJ,<p>I am sending you prayers. I was just curious when did they know that there was going to be problems with your niece?? I remember you saying that she was like three weeks early. Had there been red flags through the whole pregnancy? I am so sorry to hear about the CF. <p>I totally understand your anger. I have been scared my entire pregnancy that something would go wrong. I never thought that but once you are knocked off your butt by life, you seem to expect the worst. I have less than 8 weeks left. Your whole family will be in my prayers!! <p>babstr.

#811637 05/21/02 02:16 PM
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MJ I will pray for Rachels' full recovery.<p>As far as H leaving to visit, honey, I'll pray a little harder. I would have flipped out if it were my sister and h left after all that has gone on with your family!<p>love
Debi

#811638 05/21/02 02:47 PM
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MJ,<p>You and your family are in my houghts and prayers.<p>Unsure

#811639 05/21/02 09:07 PM
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MJ
You and your family are in my prayers tonite.<p>I can relate to the feeling of not needing another "growth experience". I feel thru all that has happened to me, not just the affair, but all the losses and struggles I have endured, I didn't need anymore...but got hit again a month ago.<p>I am beginning to feel that God overestimated what He thought I could handle.<p>Could your H come back early from his visitation this time to help you? If not lean on us here...we are all here for you!
NGU
I do not know much about CF. I am angry that your niece must suffer thru that at such a tender age.

#811640 05/21/02 10:21 PM
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Hi MJ<p>This is sad news, MJ. I am so very sorry. I loved Twiisty's post. It was so comforting and wise...I hope you were comforted by her words and received some measure of relief through the people here.<p>CF used to be my favorite charity. When I heard they had found a cure, I switched to another cause that seemed more needy at the time. Now I feel bad I did that because obviously, sometimes there isn't a cure.<p>MJ, you and your sister and your families, and little Rachel, are in my thoughts and prayers tonight.<p>God bless and comfort all of you.<p>Love

#811641 05/22/02 04:03 AM
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OH, I'm so sorry to hear this news, but grateful that your niece is surviving her surgeries and tolerating her feedings. Those are major blessings.<p>I think the doctors are there to basically let us know what to pray for. It's tough to get answers to the Why God Why questions, so probably best not to even touch that with your mind right now... or ever, for that matter! Some things we won't get to ever know why in this life.<p>Whatever you do, keep the faith! God will get all of you through this! [img]images/icons/wink.gif" border="0[/img]

#811642 05/22/02 04:18 AM
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MJ,
I'm sooo sad for your sister, BIL, and family. What a difficult road for your neice and the family to travel!! I hope they can join a support group in their area for families dealing with similar issues. My MIL works with families whose children have on-going medical issues, some of them fatal, and it is so heart-wrenching. There is also good books... I used to belong to a wonderful support group for parents who had lost children. Knowing for years ahead... it is hard for me to imagine coping with the continual grief. <p>I'm sorry you're having to deal with H's trip to Precious without you at this difficult time.<p>Prayers for all,
J

#811643 05/22/02 07:40 AM
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I am so sorry for your troubles and all the pain you and your family will be going through, we will pray for little rachel

#811644 05/22/02 08:27 AM
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MaryJanes,
I came to read post this morning, and I only read one before you, I think I was meant to log on this morning.(you will know why in a minute)
MaryJanes, What has happen is one of the hardest blows a family can take, your heart aches...you feel all alone in the pain of this news even with family around. you may feel a million emotions in just a days worth of time....right ?
How do "I" know ? someone you have never heard of or talked to? because I HAVE Cystic Fibrosis!!!
I am in my mid 30's , yes you read right.
I know the pamplets and info you first read say many of us only live to 20, but really the "average" age is into your 30's(you just hear more about the kids)..."but" I have meet on-line and at the Hospital and at CF clinic people older then I am.
yes it is true some will have a harder time, but others will live normal lives just needing extra care here and there daily.
I know the pain and shock your family is feeling, all the emotions....because Im also a mother, and two of my children have CF.
I remember the day the test results came back,
I still can remember the way my heart ACHED as if it were yesterday.
I know your scared, angry , and every other emotion you could name. It is a form of grief that things might not go the way you dreamed and hoped.
But it is going to be ok...maybe not the way you hoped, or as easy, but your family will get through this together, please just be there for your sister....and most of all love your little niece with all you have and then some as you are,do not give up on her for a minute, she is showing you the fighter she is! [img]images/icons/smile.gif" border="0[/img] believe in her, and she will prove to you the touch strong cookie she will be! (what a pretty name they gave her by the way-and congratulations on being a new auntie!)
Yes she is having a tough start, and Im sooo sorry for that, and for how worried your family is, this is so hard. but it happens a lot,(babys with cf being born needing these surgerys and extra care and time) and things may settle down a lot once they get the surgery and some of these other things worked out and running smooth.
Some of the adults with CF started off with the most rough starts just like this.....do not let anyone tell you this will be the pace of her whole life. (it might not be)
I know it is not easy to believe right now, but please trust me.
I have heard of worse starts with a CF baby, it is not a sign of what will come.
Some day she may be the one trying to reach out by e-mail to a scared Auntie just as I am to you, she may be the one to say "hey, Im wayyyyy past my 20's do not count me down and out" [img]images/icons/smile.gif" border="0[/img]
She will have to be more carefull in life, avoid things like really sick people, things like that...she will need medications, and visits to the Doctor more often and to what is called CF clinic (where several specialist see all the patients with CF to make sure we keep things running smooth between Doctor appts) but you get used to this the same way you would feeding the cat or putting out the dog. please do not think Im taking this light, Im not.
But you "really" do get used to just doing what you have to do. is it always easy? no...but nothing in life is! but there will so much more then just this disease.... after the tubes are out, and the hospital nursery scare is a memory...there will be first smile, first word, b-day party, first day of school. first auntie sleep over with her cousins, and pillow fights. [img]images/icons/smile.gif" border="0[/img]
today Im going to the school to watch a play type musical , the one my nine year old son with cystic fibrosis is in! you will do this someday also too! you know who is going with me to watch? his 15 1/2 year old sister with CF ! [img]images/icons/smile.gif" border="0[/img]
she did not want to miss his big day.
Im not sure if this is still her e-mail, but I want you to reach bevd@HHCS.COM , her name is Grandma Bev,(if that is not it let me know I will reach her) she not only has family with CF, she works for a company that gets medications off to CF familys...she can give you the e-mail, and web sights for some of the best help, advice, and answeres for cystic fibrosis you will ever find.(they were more of a help at times then what the Doctors might hand you to read) a couple of these have where you can post and talk to others just like you, the loving aunts, mothers and so on...and those that answere will have "been there" and talk you through it, answere questions,teach you... be there to sooth fears. they are honest! some who answere will be other adults such as myself "with" CF , and as I said many are older then I !!! (really really) [img]images/icons/smile.gif" border="0[/img]
Let me know if you reach her, if not I will send you some links myself.
Im praying for you sweet new niece, and your family!
Snokums

#811645 05/22/02 09:03 AM
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Babstr, they knew about two weeks before Rachel's birth that there was something wrong. My sister was huge with this pregnancy--gigantic. It turns out she was hold lots of extra amniotic fluid because of the baby's illness. So much extra, that at 38 weeks Rachel was still flipping around--breech one day, transverse the next, etc. My sister was having a lot of difficulty breathing because her womb was so huge it was crowding her own lungs. <p>They are lucky, there is a very good CF center at the hospital where Rachel was born. They are also lucky to be only about 45 minutes away. Imagine living in Montana or someplace like that where you could easily live hours away from a CF center. Ewwww! <p>Snockums, thank you for your long email. I know that the life expectancy for CF has gone from 8 years to 30. I just found that out last night as a matter of fact. And I know that the average number of hospitalizations per year is way down also. Different mutations of the gene also mean different expressions of the disease and different courses of treatment.<p>There have been lots of great advancements<p>
  • aerosolized antibiotics
    drugs to break down the DNA of dead white cells that gather in the lungs and promote lung infections,
    medications to thin the mucuous secretions,
    pancreatic enzyme supplements to stop the malnutrition that used to kill so many young CF patients or contribute to their deaths,
    even some trial gene therapy with inhaled genetic material
<p>My sister is an RN who has cared for children on vents (she used to do private nursing for house-bound paralyzed kids on vents). She has also been the charge nurse in residential homes for multiply-handicapped adults. She has lots of great experience to bring to this. <p>I also know that they would not have aborted even if they knew that this was coming. However, I am angry that we didn't even suspect that CF was a possibility. They already have two major birth defects in our families and because they are now medically manageable they went ahead and had children. (If I had been born 30 years earlier than I was, I would probably have died by age 40 instead of being a new mom.) I don't know if their decision would have been different if they had known this.<p>I am calming down quickly. Thanks for the prayers and good wishes (and the good information Snokums2002). I don't know how my sister is doing, I haven't had the courage to call her yet. I also don't feel like I want to intrude at this time that they may want to just handle this alone.<p>MJ

#811646 05/22/02 10:11 AM
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Call her.....even if just to say you do not know what to say but love you.
those brief but simple words or letters meant the world.
the comments people meant well with (but it killed at the time when things are fresh) were "it was meant to be"
or "due to sin", you can handle it thats why this happen. [img]images/icons/mad.gif" border="0[/img]
at the time it was like a slap.....just being honest.
One of the most brief kind notes I got was we love the baby, we are there for you, our heart weeps with you. (over the news).
some days she will be strong, some she may cry....
I come from a family with medical back ground also, in some ways it is great as you know a lot, in other ways you know to much. [img]images/icons/wink.gif" border="0[/img]
Im sure you sister is the same.
Please do not let fear or not knowing what to say or how to say it keep you from reaching out.
my sister and I were not very close growing up (due to age space and she did not want a sibling,nothing major) but I will never forget the
way she just showed up right after the test result came back, or called to let me cry or talk.
Or just sat there.
How is the baby doing today ?
Snokums

#811647 05/23/02 11:39 AM
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Divine intervention....it never ceases to blow me completely away.

#811648 05/23/02 05:22 PM
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MJ,<p>So she was already 38 weeks! They never saw anything in her other sonograms? That is unreal. I am still praying for her, and that your other niece comes out negative for any signs of CF. <p>babstr.


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