Need your advice please!

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Lexee15:
Well I spoke with my attorney, finally, he said that there were really no laws in the books about whether I was obligated or not to tell him about the baby’s condition…he said it was more of a moral issue. He also assured me that he really couldn’t go against my wishes when it came to the healthcare I would want my child to receive.

For instance, if he didn’t want her to be on a ventilator or something like that, if I want it then he can’t say no…it could turn into a battle though, but doctors shouldn’t heed to his wants, especially if they know this is a divorce situation.

He also mentioned that aside from the humanity part of this, it wouldn’t look good for his “fans” to find out that he denied his child healthcare…or that he wanted his child to die, very bad for his “family man” image.

So I’m feeling pretty comfortable about telling him knowing that he won’t be able to make decisions I don’t agree with unless he wants a court battle to ensue.

Now, for myself, I’m feeling pretty deflated 😦 . I had an appointment today and the doc went over the ultrasound results with me…apparently nothing has changed except that they noticed that the baby’s ribcage wasn’t the size they think it should be, which means that it can be a sign that it is not growing anymore, if that’s the case then there won’t be enough room for her lungs…which of course means that she won’t survive after birth.

I’m really hating the thought of giving birth, I feel as if the days are going by too fast…I don’t ever want that day to come!!! I find myself crying alot more often, I feel like I just need to give in and accept that my child isn’t going to make it…I’m losing hope, I doubt there will be any kind of miracle. My family isn’t helping either, they don’t want me to even talk about her not making it, they say I’m not giving her a chance. I feel like I need to be realistic and take care of things, I don’t want to be unprepared at the last minute heaven forbid the worst happens. But I also feel like this is killing me slowly, my marriage failed and now my child’s going to die…I don’t even want to think of what’s next for me. It seems like the more I’ve turned to God and prayer the worse things have gotten for me…I don’t understand. I don’t want to question God and I want to be able to accept His will, but this is so hard and I can’t help but feel like it’s some kind of punishment…I just can’t seem to see this as anything other than that.
Hi Lexee

Peace be with you. I think I would tell him, espcially if you knew that you have more say in the treatment, espcially given the state that he is in.

If it does you well then keep on posting here & make sure you are calling people in your area if you need help, cause I’m sure all this is very hard on you. As a matter I’m sure that anyone who could help you would see it as very much a blessing and a grace for them. I know you must be questioning God, I don’t think that is wrong, ask away, eventually he’ll give you the answers. Just don’t lose hope. I know it must be hard with the family not wanting to talk about if she doesn’t make it. I guess in reality she may make it or she might not. But what are the things we know. She has a mother that loves her and she is very much wanted. In fact there are quite a few here moved by her story and what can I say, we very much love her too, want her to make it, and are praying for her. But if she does not make it, I could only think that as we entrust her to the Lord, and if that so mean she ends up in heaven, she would certainly be praying for those who cared, and espcially for you. So if you feel sorrow, feel sorrow, if you feel joy feel joy. There is much to grieve and to celebrate. You certainly sound like a wonderful mother, and all these moments will be glorfying . Perhaps if you get a chance meditate on a rosery trying to sort out feelings and what this all means. But like I said its ok to feel deflated, and woman thats a wonderful mother would in that situation, but do not dispare in the Lord.
 
Lexee, Do not give up, I have been reading the Bible and it says time and time again how we have to suffer somewhat here on earth before we are called home to heaven. The suffering helps us get closer to Jesus.We cannot understand Gods plan but have to trust in him because HE LOVES YOU and YOUR BABY TOO and he will ultimatly take care of us all. Dont give up hope Lexee. :blessyou:
 
Lexee - Please do not give up. Have you talked to some of the folks with LPA, either parents who have been where you are or the Medical Advisory Board? Please, let someone who knows this road hold your hand.
 
Above, I may have come off as a bit harsh. It just breaks my heart - I’ve known so many cases shere doctors tell women that babies with SD will not live, and most of the time those doctors are dead wrong.

Of the 200+ types of SD (dwarfism), very very few are fatal. I have a rare type, pseudoachondroplatia. I’m 3rd generation (my grandmother, my dad and my brother all have pseudoachondroplatia), I have volunteered on a large scale with LPA. I know hundreds of people with so many types of dwarfism (I even know one lady who has the type named after her, she is the only person ever diagnosed with that type).

Can there be fatalities, yes there can be. They are very rare. There are parents who have gone through losing a child to a rare form of SD who are still involved in the orginization, and would share their support with you.

Aside from your Church and inet family - you have another group who will support both you and your daughter.
 
Lexee:

I am so sorry you are feeling so defeated right now. I’m sure it seems you are stuck in a very dark place and the burden of all you are dealing with is weighing you down and keeping you from seeing the light. Remember always the God does love you, and sometimes He allows those among us as strong and gifted as you to teach those of us who are weaker. There are saints among us and sometimes I believe all it takes to be one is to have the faith to do the right thing under the worst of circumstances.

Perhaps the only real suggestion I could offer is to find at least one person in your life can you lean on for support. Whoever it is, this is the time to call in your chips and ask for help. We all try to be strong and independent–but times like this make us realize there are times we NEED other people. Whether its help caring for your son, time to be alone, someone to be there when you can’t stand to be alone, someone to come to medical appointments with you, etc., you needs some support. Don’t go this road alone.
 
I just stumbled across this site for women facing difficult diagnoses of their preborns:

www.benotafraid.net

It looks like a good place for some support.

Sorry about misunderstanding your baby’s diagnosis; I think I may have gotten you mixed up with another poster with a similar name.

I am remembering y’all in my rosary today.
 
Dear Lexee,
My heart goes out to you. I have never been able to have children, although I have four step-children. I can’t imagine being pregnant and finding out such a situation and then being seperated too. I too agree with posters here, that you should please, reach out to someone in your parish or call a priest and get some help. Do you have Catholic Social Services in your area or something? Perhaps your priest may know of an older woman who would come along side of you to help you at home, or just listen. You will most sincerely be in my prayers. Please reach out to someone there. Where are your parents in all of this? Do they live nearby? Please keep us posted.
 
Lexee - We are praying for you and your little one. Don’t lose hope - God knows what His plans are for you and this child; you have not been forgotten. He very much loves you.

You said that it appeared her rib cage was too small. I know two people with Skeletal Dysplasia - both wonderful persons. It has always been my understanding that the rib cage of a person with SD is smaller than the rib cage of a person without the disorder, but grows as the child becomes older. So wouldn’t her rib cage be normal for her then?

As kage_ar said, it seems that those cases which may be fatal are few and far between. So your daughter may very well surprise you!

Again, we’re keeping you in our prayers. Let us know how things progress, and if you tell your husband. I hope this trial brings his senses back to him.
 
Thanks everyone for your wonderful thoughts and your prayers. I’ve been feeling a little better, I increased my prayers again…I don’t know why I have these ups and downs when it comes to my prayer life. Anyway, I finally talked to my husband…after having a big fight a few days before…he even threatened with going after full custody of my son!!!

I was livid when he said this…he knows very well that his life has no room for a baby, but he had to use something to get at me. When we met today I warned him not to ever threaten me with that again…I have plenty on him to ruin his career…he then said he wasn’t trying to threaten me he just wanted to be able to see the baby. I went on to tell him about the babies condition…he asked a few questions but didn’t seem very concerned or surprised. He did mention that his sister and his cousin had gotten similar diagnosis with their baby girls and the babies ended up fine. Apparently there is something genetic going on in their family, but the diagnosis given to them was wrong. Anyway, it doesn’t matter…I’ll just keep praying for my child(ren) and accept whatever God’s will may be…I will continue to also pray for the strength to deal with whatever comes. Again, thank you all for your support.

Oh, here’s a question…with him even threatening the custody thing how many of you think I should just make the decision to move back to California? I have a feeling that if I stay here that’s the way he’s going to try to control and manipulate me. My attorney said that a judge would most likely let me move since my children would be so young and I have no family support here. What do you all think?
 
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Lexee15:
Oh, here’s a question…with him even threatening the custody thing how many of you think I should just make the decision to move back to California? I have a feeling that if I stay here that’s the way he’s going to try to control and manipulate me. My attorney said that a judge would most likely let me move since my children would be so young and I have no family support here. What do you all think?
My opinion is to do what’s best for your kids. If moving back to Califiornia means you would have family support in raising them, then that would be my vote. But that is only if you are positive that their dad should not be a part of their life at all.

You are in a tough spot. Continue praying and continue to be open to God’s answer (it may not be what you are expecting).

Malia
 
Dear Lexee,
Everytime I read your posts it brings tears to my eyes. You sound like such a wonderful, courageous and caring mother.
I remember when I was at my lowest points in my life, I felt God’s presence the most.
God sees every tear you cry and is there to hold you up. He will carry you if that’s what you need. Have you read ‘Footprints in the Sand’?
I’m sure you have, but I put it in this post for you anyway.
I pray for you all the time Lexee and your dear little ones.
This difficult time will make you stronger and help you to become closer to God.
I pray that he will wrap his loving fatherly arms around you and keep you safe.
I will keep praying for you and your little baby.

One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.

This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.

So I said to the Lord,
“You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during the most trying periods of my life
there have only been one set of footprints in the sand.
Why, when I needed you most, you have not been there for me?”

The Lord replied,
“The times when you have seen only one set of footprints in the sand,
is when I carried you.”

Mary Stevenson
 
Dear Lexee,

I’ve got you and your baby in my prayer journal so I remember to pary for you. (Of course your son too). What a tough time you are having. I can only say, that keep praying and God will let you know what to do as far as moving. If you have more help in California, that may be best. Just make sure it isn’t done out of spite alone. In the meantime, do you have anyone who can help you there? Can you go to your priest and see if there is anyone in your parish who might be willing to volunteer to lend you a hand? Please keep us posted.

May God Bless and keep both you and your children.
 
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