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I am just crying and crying for the loss of our old life.

My daughter is 9 and does not want to take medicine everyday- let alone forever. I feel like our family will never be the same.

I feel so sad and sorry for my daughter- this hurts me to the core of my being-

How do you all handle this?

 Reply posted for mygirlrj.

I feel your pain and loss of a prior life.I try not to go to that place of thinking how life use to be -carefree and more relaxed for sure ! I am glad that you found this site, because you are talking to parents who know what you are going through. Our daughter is adjusting to her illness and is now in college. She was diagnosed in middle school. We go through periods of time when it's not on your mind every waking moment. When a flair-up exists, it's pure worry and ultimate stress. The uncertainty of it all is what bothers me the most. Prayer and a strong faith has helped us cope, and talking to others who are going through the same thing deffinately helps. Is there a support group in your area ? There isn't one for parents of children with IBD in our area so this site helps most of all.

Hang in there !! 

 Reply posted for mygirlrj.

Better days will come!  You can do this and so can your daughter.  It has been helpful for me and my son (age 9 diagnosed with Crohn's in Aug.) to focus on people who have lived victoriously with the disease like David Gerrard of the Jacksonville Jaguars!  Each day I pray for strength and wisdom and ask that God will make my son strong and determined through all of this so that he can change his world in a positive way.  Grieving over "what was or what will never be" has been part of the process for me and part of the journey toward accepting "what is" and making the best of it.  Be patient with yourself and with your child, there is always hope!  Praying for you.

 Reply posted for mygirlrj.

I am so sorry you are having a tough time.

Some days I am able to get through the day only 10 minutes at a time and other days it may be measured by lunch to dinner to bed time.  It is very difficult.   The fear, sorrow and guilt are strong emotions.

Although I question Him from time to time  - I do believe God gives us only what we can handle.  Hang in there. 

You and your family are in my prayers - Davis' mom

 Reply posted for mygirlrj.

This echos all the other parents' replies but you are right, your family will not be the same.  But it doesn't mean it can't be great.  My daughter started with Juvenile Arthritis at 3, a neuro complication this spring at age 5 and then a summer hospitalization and Crohn's diagnosis and she's 6.  There are days to be sad and that's okay.  It's important to empathize with your kids and that's okay.  Grieving about the change is okay.  But eventually, I decided that feeling sorry wasn't the thing because there is nothing sorry about these kids.  They are the toughest, most resilient, inspiring kids I know.  They function at a level of pain and illness (sometimes) that would leave most adults in bed and in tears.   We ofent say, in our family, that Crohn's & Arthritis are part of who are daughter is but they don't define her.  She's funny, spunky, provides hairstyle advice to her physicians, bugs her big brother, dances in the kitchen, loves animals, wants to travel to Africa, eats brussel sprouts with her Dad at Thanksgiving (for the record I give that a YUCK), loves to paint, can hold her breath underwater longer than all her friends, the list goes on and on........

I am sure your daughter has a list too.  :-)  Remind yourself of those things and know that every day will not be like today.  You'll get there and so will she!!! 

Last advice, vent away on this forum.  It is full of caring people who have been where you are or are just arriving.  Some times I post more often than others but this, the support group and reading all I can to make me an effective advocate for my daughter have all made the tough days a little easier.

Take care.....you'll be in my prayers.

 Reply posted for mygirlrj.

Yes, there is a sense of loss and even tears of 'how could this happen to this beautiful child'?  But it is what it is, so acceptance is extremely important for all involved.  My daughter is 9 and just got out of the hospital yesterday (3rd stay since she was 6). It is challenging;  it's a drag, but she is a competitive dancer and found when she dances, all her feelings are set free.  She has found a passion that allows her to get lost in herself and a great desire and attitude to stay well (even though she isn't always well).   It isn't the trials that are thrown at us, it is how we prepare ourselves and pass these attitudes onto our children. I know, I have a husband that gets very angry that his little girl is so sick at times.  It is hard when they are in pain, agony and tears but then there are good days too.  Her dance teacher has this sign in her studio "Don't wait until the storm is over, learn how to dance in the rain."  It makes me smile every time I think of this phrase.  You can grieve and yes, life has changed, but your child still will grow into a productive, caring, compassionate adult and who knows the cure may be right around the corner; we all have to have hope.  If you are having a difficult time, seeing a counselor may help too, just to give you some coping strategies.  In our 3 years of all of this, we cared for and lost 2 parents to cancers.  I have come to accept life as it is and cherish every day and make things fun for our daughter in the not so good times.  We had a hospital room filled with crepe paper hanging from the ceiling, homemade ornaments on the walls and cut out snowflakes on the window.  I don't want to sound like a cheerleader but that's what we are as moms:)  

Best of luck with your daughter.   It's tough but you have more courage and strength in you than both of you ever thought you had!

 Reply posted for mygirlrj.

Hi. My son is 8 and has Crohns.  He was diagnosed in October of 2008.  Initially, I thought I would never be able to handle my son being diagnosed with a chronic medical condition like Crohns.  But like the other parents, with time you learn that it is not going away and you need to be positive for your child.  You need to be there for your child and when they are this young you need to be their voice at the doctors office, at school, ect.  As parents we all wish it were us and not them.  It has been a little over a year since my son was diagnosed and some days are still very hard but there comes a point when you come full circle and you learn to cope.  This forum is great for venting and asking questions.  There is also a camp that CCFA sponsors  called camp oasis exclusively for kids with Crohns and UC.  Check it out and see if there is one in  your area.  My son was not well enough last year to attend but I am hoping next year or the year after he can go.  Take care and I will keep you in my thoughts and prayers.  I used to always pray that there will be a cure for Crohns in my son's lifetime. Now I pray for all our children.  God bless and take care.

 Reply posted for mygirlrj.

Mom, I know how you feel......please stop crying.   It isn't good for you or those important people around you.  

I'm not sure how closely you follow this CCFA community, but I am in the same boat (just a little further up stream).   My daughter was sick from infancy........hospitalized and misdiagnosed a couple of times and not properly diagnosed until age 4!   I know how hard it is.   When she was first diagnosed, I had never even heard of this disease.   So after my "feel sorry for me period", I picked myself up and started gathering information.  Remember, like anything else in life, information is POWER. 

You are right, your life will never be the same. It gets easier.  It is now almost 6 years of a low fiber/residue diet, daily meds, reg. doc visits.  We had to embrace it because it isn't going away anytime soon (though I pray every day for the cure).  I don't even call it a diet, it is just a lifestyle.  My daughter now knows what she can, can't have, even knows how to "cheat".  

Now, I would be lying if I said everyday is a  great day, sure we have had our share of ups and downs, but who doesn't??   Stay strong for your family.....I have become my daughter's advocate and encourage her to try anything she wants (within reason).  She is now active and living the best life I can give her.

Be well, and know you are not alone.  

Lizzies Mom

 Reply posted for mygirlrj.

I feel your pain,  My son was just diagnosed with crohn's in sept and my daughter was diagnosed with kidney cancer the same week.  They are 14 and 17.  My son said that our family is just not the same anymore.  He's right.  Hospital stays, pills up the wazoo, constant questions of "how are you feeling?"  My older son in college feels cut off from us and doesn't understand what we've all been going through at home.  Actually, the kids are doing ok, they have maintained a sense of humor about it.  They call each other Tumor and Crohn's.  But, it's hard to stay positive.  Everytime we lower our sons predizone dosage, his symptoms come back.  It's frustrating and I wonder will it ever get better?  It just all feels surreal and unreal.  Like, it should all go away like a bad illness.  It should just be done.  But, this will never be done.  My daughter didn't want to go to another oncologist and we were arguing in the car and I thought to myself am I crazy?  I'm arguing with my daughter who has cancer!  I'm exhausted, but imagine how they feel.  I guess all we can do is stay positive for them, cut them some slack and listen to them when they need it.  And go on this site when we need someone to listen to us!  Take care and good luck with everything.

Court's mom