Frantic - went to priest today and it didnt help - please help me

[vester444]

Hello, I hope I am not bothering you too greatly, but I have a question for all of you - sigh… My husband has Neurofibromatosis (NF) but daughter had a DNA test done on her when she was born - thankfully the DNA test showed that she didnt have it. She is 9 and a half months old.

We noticed recently on her a lighter colored “spot” for lack of a better word, and after speaking with our doctor determined that there is potential that it COULD be a “thumbprint” macule. It is located right under the left knee - outer side. It is not completely white - or really in the shape of an ash leaf - it is just a lighter pigmented spot.

Now, obviously, she only has one of these, and no other clinical manifestations (that we know of) and more than likely she does not have this disease, but frankly I"m OUT OF MY MIND WITH WORRY.

We have an appt. to see a pedi. dermatologist, but basically the bottom line is that he/she is going to say that without other clinical symptoms (which dont happen usually until 2 to 5 years of age) we will just have to “wait and see.”

We can do a DNA test on her to find out - and we are considering having this done.

Anyway - I went to a priest today. I have been so distraught. I have read the Bible, and talked to friends, and everyone just tells me I should just “trust God.” But how is it that He says in the Bible…ask in my name and you will receive but people dont always receive what they ask for? I would ask that my daughter is healthy - and she may be - but what about those people who ask for cures, etc. in His name and dont receive?

I feel also like I am being tested. That I didnt do well coping with my husbands illness, and now God is testing me again, and my daughter has to suffer because I’m being tested…do you see what I mean?

The priest today just told me…pray. sigh. Ok - that isn’t theologically enough for me to sink my proverbial teeth into. I want to talk to someone about this - and I’m MORE that upset that that is all he told me. I was crying in his office, and he just said “pray” and let God come up with the answers. When I told him, what am I supposed to do if something horrible happens, he just said to submit to God. But that isn’t comforting or helpful if you can understand? This is the ONLY TIME I’ve ever been to a priest individually except for confession, and I feel horribly let down.

Can someone here help me? Offer me words of theological advice? Comfort? Anything? Please.

We have been through so much with my husband’s NF - he is only 31 years old and has tumors all through his left leg. We are obviously in a different “place” than many other parents due to our history and our total white knuckle fear about this. We thought we had dodged the proverbial genetic bullet when we found out she didnt have NF, now to find out that she may have TS is almost unbearable.

Vester

 

[1ke]

But how is it that He says in the Bible…ask in my name and you will receive but people dont always receive what they ask for? I would ask that my daughter is healthy - and she may be - but what about those people who ask for cures, etc. in His name and dont receive?

Sometimes we ask for the wrong reasons. Sometimes we ask for the wrong things. God will not give us things that he knows are not the best things-- even when **we **don’t understand why and even when **we **think we are asking for the right things or the right reasons. Remember, Scripture tells us that a Father will not give his child a snake when he asks for a fish.

I feel also like I am being tested. That I didnt do well coping with my husbands illness, and now God is testing me again, and my daughter has to suffer because I’m being tested…do you see what I mean?

And remember that Jesus taught us that the man born blind was not born blind because of his parents’ sins. God does not inflict suffering on others to test us or to punish us.

I was crying in his office, and he just said “pray” and let God come up with the answers. When I told him, what am I supposed to do if something horrible happens, he just said to submit to God. But that isn’t comforting or helpful if you can understand? This is the ONLY TIME I’ve ever been to a priest individually except for confession, and I feel horribly let down.

Perhaps John Paul II’s Apostolic Letter on the Christian Meaning of Human Suffering would be helpful to you.

 

[PhilotheaZ]

Hi, Vester.

It sounds like you are going through a really difficult time.

As hard as it is to believe, I think those who are telling you to pray have the right idea. But the best way to pray is not to ask God to do what WE want, but rather to ask God for help in doing what HE wants. Do you remember the words of Jesus in the Garden of Gethsemane? “My Father, if it is possible, let this cup pass from Me; yet, not as I will, but as You will.” (Matthew 26:39) We need to try to pray like that.

So of course, keep praying (as Jesus did) that your daughter be spared the agony of illness. But also pray for the strength to love and care for your daughter the best you can, no matter what. And pray that you will grow in faith and confidence in God, no matter what. And pray that whatever happens will lead you, your husband, and your daughter to an ever-closer relationship with God. When God gives us trials, He gives us the grace we need to bear them.

One of my favorite saints, Padre Pio, said: “Pray, hope, and don’t worry. Worry is useless. God is merciful and will hear your prayer.”

God will answer your prayers in the way that He knows is best for you. God sees the big picture, the eternal perspective; we just see a little sliver of reality. He knows best. Trust Him!

Here is another little reflection that has helped me; I hope it will give you courage. It is from Saint Francis de Sales:

Do not look forward to the changes and chances of this life in fear;
rather look to them with full hope that, as they arise,
God, whose you are, will deliver you out of them.
He has kept you until now —
do you but hold fast to His dear hand
and He will lead you safely through all things;
and when you cannot stand, He will bear you in His arms.
Do not look forward to what may happen tomorrow;
the same everlasting Father who cares for you today
will take care of you tomorrow and every day.
Either He will shield you from suffering
or He will give you unfailing strength to bear it.
Be at peace, then, and put aside all anxious thoughts and imaginations.

You are in my prayers. God bless you and your family.

 

[daeve]

1ke is totally right. God would never punish you by harming your innocent baby. Things just happen, and I don’t I don’t like calling bad things God’s will.

If there’s a test to do, and you can get it done…I’d do it. Whatever happens, you’ll find the strength to cope with it. We’ll all pray for you and your family here. That’s one thing this bunch can do for each other.

How about a counsellor? Does your diocese have a services directory? Maybe your insurance can direct you to a counsellor. When one of my sons was diagnosed bipolar, and the other was already severly learning disabled and failing miserable in school, I found talking to a counsellor really helped me.

 

[daeve]

PS…keep praying. Always keep praying. The rosary can be a great comfort to you. You always have your instant rosary (fingers!) with you.

 

[vester444]

I already feel like someone is listening to me (all of you) which in the end is sort of what I wanted. I just feel alone. All my friends and husband himself are just saying - look, you cant change anything so dont worry.

I know its a sin to worry, but I simply cant stop myself. Look, I WANT to be a strong person with strength and character. I could pretend I was that to you on the boards here, you dont know any different. But the **reality ** is that I’m not. The bottom line is…I feel like a child - I DONT WANT to go through this suffering. I feel that I’ve already been through so much (I know others have been through more, but I’m just saying for me its so much) and the thought of my child being ill…is just beyond the point of imagination for me. Unbearable.

I know I should be strong. I know that I should have faith and pray. But I need a game plan. I need to feel I have control of SOMETHING and I feel like I have control of nothing - and while I know I’m supposed to submit to God, frankly that is easier said than done - espeically if you have no horrible fear looming above you.

I have to say I’m horribly discouraged by my priest today (Monsegnior actually…hrumpfh) who sort of just blew me off for lack of a better word.

My baby is amazing. I cant imagine the thought of something happening to her. The fear is seriously paralyzing.

I guess I feel like I’m finally being honest about my inability to cope with these medical situations.

And I feel like a child - I just dont want to go through any more… I feel like I’m a child saying “I dont wanna” to God…if that makes sense?

Vester

 

[vester444]

So what about the fact that God says that anything we ask for in His name we shall recieve? I dont get that - if I’m asking in His name for a good intention (not selfish) for the health and safety of my daughter - how can there be any selfish motive in that?

Vester

 

[vester444]

When God gives us trials, He gives us the grace we need to bear them…

Thats just it…I dont feel as if I have the grace to handle anything at this point…

 

[LilyM]

So what about the fact that God says that anything we ask for in His name we shall recieve? I dont get that - if I’m asking in His name for a good intention (not selfish) for the health and safety of my daughter - how can there be any selfish motive in that?

Vester

If God chooses not to grant a request, it’s not necessarily because it’s selfish, simply that His will for us and those around us, and His plan for us and them, is something different.

Remember Christ himself praying in the Garden of Gethsemane that the cup of suffering be taken away? Of course Christ wasn’t asking this in a selfish way, he was never selfish, he was probably seeing the suffering our sins cause us and asking on our behalf, as much as seeing the suffering he was about to undergo.

But remember too, the Father didn’t grant that particular request. That’s why it is always imperative of us, no matter what we ask for, to end our prayer as Christ did, with ‘thy will, not mine [nor anyone else’s for that matter], be done’

It’s a bit silly to say to anyone not to worry about things you can’t control - of course we worry, it’s unavoidable. One thing you can do is offer up your worry and suffering during this time to God - for your family, for the conversion of sinners, to help souls in purgatory. Perhaps that’s the reason it has been given to you and to them.

And do pray, especially to Christ, who agonised over his own suffering, and Mary who also had to watch her beloved child suffer. They understand where you are at mentally, no-one better.

I’m about to head off to Adoration and Daily Mass. I’ll remember you in my prayers.

 

[vester444]

Thank you everyone for your quick responses, they have meant a lot to me, just to know **someone ** out there is listening.

And thank you for all your prayers. I have to believe that they will help. I have to believe…I have to believe…

Any other thoughts, theological ideas, or ways that I can tangibly attack this problem would be most appreciated as well.

Vester

 

[LSK]

So what about the fact that God says that anything we ask for in His name we shall recieve? I dont get that - if I’m asking in His name for a good intention (not selfish) for the health and safety of my daughter - how can there be any selfish motive in that?

Vester

One of the most difficult ideas I have ever had to grapple with is the idea that what I am convinced is a good intention may not be and when I think I am completely devoid of selfish or self-centered motives I may not be…how can there be, for instance, any kind of selfish motive in my asking for the cure of a family member from cancer?

Well, is it possible that one of the reasons I don’t want that member to have cancer is because I hate having to watch other people suffer and if they are cured then, hey, my life would be a lot easier…

I do not think that the passages in the Holy Scripture you are quoting mean that anything we ask we will get if we think our motives are ok…I think that what Jesus is asking us to do is to go to Him with our whole hearts, our whole minds and our whole souls…so that no matter what is going on in our lives we can pray “Thank you, Lord, for my life today exactly as it is…I wouldn’t change a thing, even if I could”.

This may or may not be your chance to model Catholic virtue for someone else - including your daughter. If you can walk through this time with grace and dignity, relying upon the Sacraments for your strength, what an incredible wife and mother you will be!

I know it helps, too, to have friends online and off line who will let you break down, once in awhile, and not be a pillar of strength…I am sure that Our Lady was grateful for the shoulder of St. John after having to watch her Son suffer so horribly that Good Friday…even if she trusted completely that He was doing what had to be done.

 

[katy]

I don’t know if this helps you or not, but it has sometimes helped me to remember that we see life as on the “undeside” of a tapestry, full of hanging bits, messy, ugly, with pieces that go nowhere. We may or may not see the other side, where it makes sense, in this life. God does, and he makes sure that the design is OK, no matter what.

 

[Tormentd]

I truly sympathize. When I have a serious problem and I go to others for help and they tell me “pray”, it irks me to no end. As if I am not already praying. My advice: don’t pray. Stop praying. God already knows everything and sees everything. Death does not exist, and therefore neither does illness. Jesus destroyed death. If you can figure out how to believe in that then you are in heaven.

 

[llowwelll]

Vester444,

I’m so sorry for your situation and especially that your baby may be effected. I know that it is often difficult and frustrating to think that the best answer is prayer especially when you are feeling desperate, or that there is more that should be done. However, prayer is often the best thing that we can do. I’m not going to pretend that I have an answer as to why this may be happening. I don’t.

God’s plans are often beyond us. For me, 1 Corinthians 1:25 is helpful when I struggle with something that seems unfair or hard to understand: “the foolishness of God is wiser than men”. We must turn our suffering and our concerns over to God. I don’t intend to sound cold or unconcerned by mentioning this because I mean it in the most loving way that I can, but it is often said that the opposite of faith is worry. We must trust in God’s plan for us even when what is laid out in front of us seems completely bad.

Think of Abraham’s situation when God asked him to sacrifice his son, Isaac. How unfair and horrible would that have seemed if we did not trust in God’s plan for our lives? Jesus tells us not to worry (Luke 12):
26 If then you cannot do even a very little thing, why do you worry about other matters? …
31 But seek His kingdom, and these things will be added to you.

Life can be tremendously difficult. Jesus told us: “If anyone wishes to come after Me, he must deny himself, and take up his cross and follow Me.” (Mark 8:34). This is a cross for you right now. For whatever reason, God has seen fit to place these events in your life. We must all pick up our crosses and honor God with them. I know it’s not easy and it seems unfair. I am truly sorry for your situation and I will keep you and your family in my prayers. I love you, my sister, and will be praying for you.

 

[Brenda_V]

Vester,

What is TS? Sorry, I have no clue what you might be dealing with and for me that would help me help you.

I think that perhaps what you need to be praying for right now is help in not worrying over something you can not change right now. Your baby doesn’t for sure have this TS, just might have it.

God will give you the grace to live through this if your baby does have the TS. This might be the time He is allowing you to do your most worry. Once you have a definite diagnosis you will have something to do, waiting is the hardest part - since you can’t get a diagnosis from symptoms most likely until she is two then go for the DNA test! Ease your worry and… Pray, pray and pray some more, talk to God, tell Him of your worry, tell Him you are scared, He is there for you even more than we on CAF are, even if you can’t “feel” Him :hug1:

PM me if you wish to talk to someone who has “been there done that” with a sick child.

Brenda V.

 

[jmcrae]

The world got broken when Adam and Eve were tempted and sinned. Ever since then, the world has not been working right, and there have been diseases and suffering in the world.

God did not cause this, though. In fact, God is very disappointed that this happened. God still loves us, though, and will not destroy us, even though our ancestors sinned and wrecked the world.

What this means is that God is with you - when you cry, He is crying. When you are afraid, He is there to hold you tight. God is on your side.

God will use this situation, no matter how it turns out, and He will turn it around and make something good out of it. Of this, you can be sure.

 

[MSJoan]

Vester,

It sounds like you are about to jump out of your skin with a variety of emotions. It also seems you have already accepted that you are not in control here. I suspect you wanted the priest to tell you everything would be okay. Rightly so, he didn’t.

Sometimes all we can do is pray. Yes, ask God that your child not have this illness; ask that your husband be healed; ask for patience, strength, trust, acceptance; ask…ask…ask. But, it is hard to pray and hard to hear God when you are scared to death - just like it’s hard to eat and sleep. When you’re up to your neck in alligators, it’s hard to remember the goal was to drain the swamp.

The writings of John Paul II are very insightful, but when your mind is jumbled with all these emotions, it can be very difficult to focus on reading. If there’s one available in your area, might I suggest spending time in a perpetual adoration chapel. If there’s no chapel, find a quiet place, away from distractions where you can sit for at least a few minutes. Focus on quieting your mind; clearing all the chatter (ignoring the alligators). Weather permitting, try to take a walk and focus on breathing and walking. Pray for a quieting of your mind. The exercise may also help the anger that may be boiling up inside of you.

If the feelings don’t ease in a few days, call the priest back. Tell him you feel no better. You may also want to try another priest. They each have a different communication style.

…when you saw one set of footprints, it was then that I carried you…

 

[TOP]

Vester,
As a cancer survivor and husband, father to loved ones that have a genetic heart defect, I can tell you to take a proactive approach to these problems you and your family are having. Educate yourself as much as possible about the disease. Find a forum online for victims of the same type of ailment to talk about treatments, case experience’s and how they cope. Find support. And keep strong in prayer and trust in God’s merciful will. Tim

 

[Brenda_V]

My daughter made a great suggestion - start praying the Divine Mercy Chaplet and ask St. Faustina for intercession.

You can go here ewtn.com/Devotionals/mercy/dmmap.htm to see what it is all about and learn to pray it if you don’t already know. The Novena with indulgences attached will start on Good Friday, ending the Second Sunday of Easter now called Divine Mercy Sunday.

TOP also gave great, something you can do right now, advice.

Brenda V.

 

[Princess_Abby]

Are you talking about TSC? Tuberous Sclerosis Complex. I have worked with kids from a behavioral standpoint with the condition. The ash leaf mention is what made me wonder.

I am so sorry to hear the anxiety and distress in your posts. Please remember that TSC manifests differently for each child in terms of how severe his or her symptoms.

Have you looked online for any support from parents of children who have the diagnosis? I really think that being proactive about information-gathering can help empower you. It might make you feel less helpless. Understanding that there are many resources available for help/coping might ease the issues you fear facing–and knowing that whatever issues your DH has had with his NF is NOT necessarily indicative of how your daughter might suffer from TSC–IF she even has it. Reminding yourself that if this is only a possibility and diagnosis has not been confirmed–nor has any evaluation even taken place.

I know they do more than check dermatologic screen…they should want to do a brain & renal MRI, cardiac EKG, fundoscopic examination and other stuff… (All this comes to mind because a family I worked with had one child with the diagnosis and the younger child was undergoing evaluation when I began working with the family for behavioral intervention.)

But, your baby is still very young. All the manifestations take time to develop, if there IS the disorder, and one skin patch may be…nothing. As you said, it’s not in the traditional shape of the ash leaf.

You might look at this possiblity (which seems so understandably menacing) as an opportunity to surrender yourself. I struggle with that daily, myself. But the reality is that we can’t control very much in this life, and we have to accept that God allows difficult things for our sanctification.

If you aren’t content with the vague idea to simply ‘pray,’ perhaps read your posts aloud, to God, and tell Him how FRIGHTENED and DISAPPOINTED and MAD you are that the mere possiblity for your precious daughter to have this diagnosis is causing you to feel. Talk to Him as if you were speaking to the most empathetic friend you can imagine. Think about how much you love your daughter, how distraught you are over the idea of her suffering in this life. Know that God the Father cares even more about your precious little one. If talking to Him is too overwhelming, then maybe just pray for the grace to be able to pray. “Jesus, help me talk to you.” Repeat that until you’re able to do so, as many times a day as it helps, or come up with whatever short phrase ultimately brings you some peace.

I’ll be praying for you.