A mom feeling alone and isolated

[rachelsmom]

I just joined this site. I am a single mom with an 8 year old daughter Rachel. She was diagnosed at 6 month old so we have been dealing with CF for about 8 years. She is the light of my life and affects everyone around her in a positive way. She deals with her life and CF in way I wish I could. She never complains but just goes with the flow. I have always thought that is how I am but she has recently had a hard time and I am having a lot of trouble dealing with her illness and being a caregiver and trying to work full time and make ends meet. She was hospitalized for two weeks at the end of August beginning of September. We have never had to stay the full two weeks. I usually do her IV meds at home, but she grew another bacteria and she was on three different meds so they wanted her to stay. I had a hard time with this because usually I am so much control and I wasnt this particular time. She is still not doing much better so she is getting a bronch on Friday. I am really at my wits end. To top it off I just read Spirit of Lo. It really hit home. It feels like noone understands what it takes to care for a child with CF. Rachel is very healthy looking and definitely not underweight in fact a little chunky . I think people dont realize that just because you look good doesnt mean you always feel good. I know I am rambling on but I just want some advice from people who go through the same thing. How can I take good care of my baby and run a household and work without feeling like I am going to lose it. I am 35 years old and feel like I am 50 most of the time.

Thanks for listening,

Teri

 

[anonymous]

Hi Teri,

I am replying on this thread also for your reply on the IV Antibiotics thread. Please don't feel so isolated because I feel EXACTLY like you do. Our daughters are different in age but are going through similar situations at the moment. Their symptoms are very similar - fast breathing, cough - even during or after IVS. Its probably good she is getting a bronch. Sometimes things don't show up on a throat culture. Sami has had two bronchs which unfortunately showed up Pseudomonas and Stenotrophomonas. But it will be reassuring if a bronch does not show anything since its coming from deep in the lungs. The P.H. probe is a good idea too. Sami's doctors think her current cough could be a result of increased reflux and have adjusted her meds.

I also read Spirit of Lo and I actually e-mailed Terry Detrich. She was very encouraging and supportive. Like Rachel, Samantha is also so happy and positive. It's amazing the inner strength our children have. But think about it, they had to have gotten it from someone!!! You are stronger than you think, and remember you are not alone. I will try to e-mail you privately in the future, or you can e-mail me at mdgoslin@comcast.net.

Take Care, Maria (mother of three daughters, the youngest Samantha w/cf)

 

[belinda]

Hi Teri-

In hard times that I have experienced and have suffered hardship of some kind, I have stayed focus on what my beliefs prove true everytime. I am not sure what your faith is with the Big Man upstairs, but I know first hand He never gives us more than we can handle. Finding your faith helps you find your strength.

You and your family are in my prayers.

 

[anonymous]

Thanks Belinda,

I am finding out that this is true. Thanks for your thoughts and prayers. They are very much appreciated.

Teri

 

[anonymous]

Dear rachelsmom,
I'm so sorry you feel alone. I've been there too. Even though I am married and he's a great support, I still find that I stand in my daughter's room who's 10 and has cf and I wonder why me-why her? Nik has the greatest heart. She loves everyone but kids are cruel and she does find it hard to deal with at school sometimes. So of course I go through all the rejections and tears with her. That's when I see just how strong she really is. She gets up-brushes herself off and realizes it's a new day. I'm always telling her, "one day at a time honey".That's when I hear myself and realize I have to do the same thing. Take this crazy illness- one day a time. Our kids have a long hard road ahead of them and as their moms we hurt too. I find it hard to find friends that truly understand. Nik has to eat quit often or she feels pretty sick and she comes home from a overnighter and informs me how she cried herself to sleep because they wouldn't her call home thinking she'll be just fine. And all she needed was food. But parents of normal kids don't understand the physical effects this diease can cause. It's hard-I know. Last yr. at school the fourth grade girls wrote in great big letters in the bathroom "nikki **** will die soon". She's only ten. We haven't had that talk yet. But thanks to some insensitive parent that felt the need to go into great detail of her diease -to their ten yr. old..we had to deal with even a bigger problem. But you know, if I didn't have God to go to, I'd be pretty lost about now. When I'm feeling like this is all I can deal with and I want to give up-God comes and helps me through it. Nikki too. So rachelsmom, I'm here for you and I'll pray for you and rachel. You hang in there. You are NOT alone! nikkismom<a target=new class=ftalternatingbarlinklarge href="http://">null</a>

 

[rachelsmom]

Thanks Nikkismom,

It is so true. One day at a time is great advice. I cant believe how cruel kids can be. I am sorry she had to go through that. I appreciate your prayers and thoughts. I do believe this disease can only be understood by people who have a child going through it.

Thanks again

Teri

 

[anonymous]

It is so easy to feel isolated when people don't understand what we go through psyically and most of all emotionally. Other people get colds and it goes away and it is no big deal. We have to wonder when will our child be back on iv's because of this cold. Friends isolate themselves from us as time goes on because it is just too much for them as well. And there lives are just as busy and then they complain about their childrens allergies. It is hard. Did you and your husband divorce because of related stress? I am wondering because it is very hard to stay married sometimes. I am sorry you feel isolated.

 

[anonymous]

Rachels CF was only part of why we divorced. He had a really hard time dealing with her illness. She is 8 years old and he still does not deal well or show the support that he should. I guess everyone handles things differently. Rachel is my whole life and I devote most of my time to her and trying to keep her healthy. I dont know if this is the right thing to do because it does not leave much time for me. I guess we all do what we have to. Thanks for the thought.

Teri

 

[tryingtogetby]

HI TERRI ,
I'M NEW TO THIS PARTICULAR SITE AND LIKE YOU I WAS A SINGLE C F MOM WHOSE EX HUSBAND WANTED NOTHING TO DO WITH OUR 3 CF ERS AND AT THAT TIME IN MY LIFE I WAS SO SCARED I WAS TOO YOUNG TO HAVE CHILDREN AS OLD AS MINE ( I WAS 16 WHEN I HAD CHAD MY OLDEST ) ESCPEIALLY WITH CF AND NO ONE ELSE WITHIN 50 MILES OF MY HOME TOWN HAD A CHILD WITH CF SO NOBODY COULD UNDERSTAND WHAT I WAS GOING THROUGH AND THEN IT JUST SO HAPPENED I RAN OUT OF MILK AND DIDN'T WANT TO DRIVE 10 MILES TO THE CLOSEST GROCERY STORE SO I STOPPED AT A CORNER STORE AND THIS GUY WAS IN THERE AND HE KEPT STARING AT CHAD WHO HAD JUST GOTTEN HIS G TUBE AND I GOT REALLY ANGRY AND SMARTED OFF BUT HE ASKED ME WHAT WAS WRONG WITH MY SON SO I TOLD HIM AND HE DID WHAT NO OTHER MAN HAD EVER DONE WHEN THEY FOUND OUT ABOUT MY KIDS HE ASKED ALL OF US NOT JUST ME TO DINNER WE WENT AND HE AND I HAVE BEEN HAPPILY MARRIED FOR 4 YEARS NOW WE'VE BEEN TOGETHER FOR 5 SOME DAYS I THINK I MUST BE THE LUKIEST GIRL IN THE WORLD FOR RUNNING OUT OF MILK THAT DAY AND YES I SOMETIMES WONDER IF THE VERY FREQUENT HOSPITAL VISITS GET NEXT TO HIM HE SAYS NO BUT I KNOW THEY DO ME ANYHOW WHAT I'M TRYING TO SAY IS THAT NO MATTER WHAT OR WHERE YOU LIVE OR WHAT YOUR EX OR FRIENDS THINK THERE IS SOMEONE JUST WAITING FOR YOU TO RUN OUT OF MILK AND ANY TIME YOU NEED ME I'LL BE THERE TO LISTEN AND TO CHEER YOU ON YOU CAN E MAIL ME AT crystalc3878@yahoo.com SO KEEP YOUR HEAD UP AND KEEP YOUR FAITH CAUSE WITH KIDS LIKE OURS WHO LOOK AND ACT SO NORMAL BUT YET THEY REQUIRE SO MUCH MORE ITS REAL EASY TO THINK WHY DO I EVEN TRY AND LOOSE OUR FAITH I DO AT LEAST TWICE A DAY (SMILE)AND HERE IS ONE OF THE 65 ROSES JUST FOR YOU<img src="i/expressions/rose.gif" border="0">

 

[tryingtogetby]

HI TERRI ,
I'M NEW TO THIS PARTICULAR SITE AND LIKE YOU I WAS A SINGLE C F MOM WHOSE EX HUSBAND WANTED NOTHING TO DO WITH OUR 3 CF ERS AND AT THAT TIME IN MY LIFE I WAS SO SCARED I WAS TOO YOUNG TO HAVE CHILDREN AS OLD AS MINE ( I WAS 16 WHEN I HAD CHAD MY OLDEST ) ESCPEIALLY WITH CF AND NO ONE ELSE WITHIN 50 MILES OF MY HOME TOWN HAD A CHILD WITH CF SO NOBODY COULD UNDERSTAND WHAT I WAS GOING THROUGH AND THEN IT JUST SO HAPPENED I RAN OUT OF MILK AND DIDN'T WANT TO DRIVE 10 MILES TO THE CLOSEST GROCERY STORE SO I STOPPED AT A CORNER STORE AND THIS GUY WAS IN THERE AND HE KEPT STARING AT CHAD WHO HAD JUST GOTTEN HIS G TUBE AND I GOT REALLY ANGRY AND SMARTED OFF BUT HE ASKED ME WHAT WAS WRONG WITH MY SON SO I TOLD HIM AND HE DID WHAT NO OTHER MAN HAD EVER DONE WHEN THEY FOUND OUT ABOUT MY KIDS HE ASKED ALL OF US NOT JUST ME TO DINNER WE WENT AND HE AND I HAVE BEEN HAPPILY MARRIED FOR 4 YEARS NOW WE'VE BEEN TOGETHER FOR 5 SOME DAYS I THINK I MUST BE THE LUKIEST GIRL IN THE WORLD FOR RUNNING OUT OF MILK THAT DAY AND YES I SOMETIMES WONDER IF THE VERY FREQUENT HOSPITAL VISITS GET NEXT TO HIM HE SAYS NO BUT I KNOW THEY DO ME ANYHOW WHAT I'M TRYING TO SAY IS THAT NO MATTER WHAT OR WHERE YOU LIVE OR WHAT YOUR EX OR FRIENDS THINK THERE IS SOMEONE JUST WAITING FOR YOU TO RUN OUT OF MILK AND ANY TIME YOU NEED ME I'LL BE THERE TO LISTEN AND TO CHEER YOU ON YOU CAN E MAIL ME AT crystalc3878@yahoo.com SO KEEP YOUR HEAD UP AND KEEP YOUR FAITH CAUSE WITH KIDS LIKE OURS WHO LOOK AND ACT SO NORMAL BUT YET THEY REQUIRE SO MUCH MORE ITS REAL EASY TO THINK WHY DO I EVEN TRY AND LOOSE OUR FAITH I DO AT LEAST TWICE A DAY (SMILE)AND HERE IS ONE OF THE 65 ROSES JUST FOR YOU<img src="i/expressions/rose.gif" border="0">

 

[rachelsmom]

wow, what a story! That is about the sweetest thing I have ever heard. I guess there is hope although sometimes it is hard to remember. Our children really are blessings. Thanks for the pep talk. I will be in touch.

Teri

 

[rachelsmom]

wow, what a story! That is about the sweetest thing I have ever heard. I guess there is hope although sometimes it is hard to remember. Our children really are blessings. Thanks for the pep talk. I will be in touch.

Teri

 

[Sean]

Hello,
I am a single father of a 11 year old son with CF. We lost his mother almost 3 years ago to CF. I know it is tough. I work full time and commute a hour 1 way to work. He has to get up at 5:30 am every morning to get all his treaments done before he goes to sitter. Everyday is a race to get everything done. I am 33 and know what you mean about feeling 50. The year his mother passed away he went into hospital for first time. That made it really tough. Then he tested positive for b cepatia and his blood sugers went crazy. I felt like I couldn't take much more but I knew I had to be strong for him. I always just say to myself make every day the best you can. He is a great kid. He has been through so much but always is in good spirits and never complains about pic lines shots ect. He is my best friend and my life is devoted to him. I wish you the best with your child and hope things get better.

 

[Sean]

Hello,
I am a single father of a 11 year old son with CF. We lost his mother almost 3 years ago to CF. I know it is tough. I work full time and commute a hour 1 way to work. He has to get up at 5:30 am every morning to get all his treaments done before he goes to sitter. Everyday is a race to get everything done. I am 33 and know what you mean about feeling 50. The year his mother passed away he went into hospital for first time. That made it really tough. Then he tested positive for b cepatia and his blood sugers went crazy. I felt like I couldn't take much more but I knew I had to be strong for him. I always just say to myself make every day the best you can. He is a great kid. He has been through so much but always is in good spirits and never complains about pic lines shots ect. He is my best friend and my life is devoted to him. I wish you the best with your child and hope things get better.

 

[rachelsmom]

Sean,

Thanks for the reply. I am much better than when I posted the message. I think I was just having a moment. I am so sorry for your loss.
I cant even imagine how tough that had to be for you. I admire your strength. I understand how you feel about your son. My daughter rachel is also my best friend and I cant imagine life without her. She is so full of life and rarely complains about treatments or piccs or anything. Sometimes I think they are stronger than we are. They are amazing arent they!

It is very hard being a single parent especially when that child requires extra care. Just know that you are not alone. If you ever need to vent or just talk feel free to email me at Tdim5@aol.com. Hang in there. I will tell you what people always tell me .....your son is amazing for one reason.......YOU. Take pride in that accomplishment. Hope things go well for you. Talk to you later.

Thanks again,

Teri

 

[rachelsmom]

Sean,

Thanks for the reply. I am much better than when I posted the message. I think I was just having a moment. I am so sorry for your loss.
I cant even imagine how tough that had to be for you. I admire your strength. I understand how you feel about your son. My daughter rachel is also my best friend and I cant imagine life without her. She is so full of life and rarely complains about treatments or piccs or anything. Sometimes I think they are stronger than we are. They are amazing arent they!

It is very hard being a single parent especially when that child requires extra care. Just know that you are not alone. If you ever need to vent or just talk feel free to email me at Tdim5@aol.com. Hang in there. I will tell you what people always tell me .....your son is amazing for one reason.......YOU. Take pride in that accomplishment. Hope things go well for you. Talk to you later.

Thanks again,

Teri

 

[anonymous]

My name is Jason and I also am a single father of a little boy named Zach he is five years old as of yesterday. I too understand how you feel. I was graced to marry a woman who ran out on both of us when Zach was diagnoised with cf. Sometimes I wake up 5 or 6 times during the night just to check him, because the doctor told me that he could be happy and healthy one day and gone the next. I work a full time job and also travel but thanks to a great sister I make it. Teri I hope everything stays good for you and for everyone here.


Jason

 

[anonymous]

My name is Jason and I also am a single father of a little boy named Zach he is five years old as of yesterday. I too understand how you feel. I was graced to marry a woman who ran out on both of us when Zach was diagnoised with cf. Sometimes I wake up 5 or 6 times during the night just to check him, because the doctor told me that he could be happy and healthy one day and gone the next. I work a full time job and also travel but thanks to a great sister I make it. Teri I hope everything stays good for you and for everyone here.


Jason

 

[rachelsmom]

Jason,

First of all I cannot even imagine how a mother could do that. I know someday she will have to regret that decision. I also know how it feels to bear the burden of CF on your own. It is not an easy task. I also have family to help out however even for them it is hard to understand the same things we go through. There are many nights I lie next to my daughter and just stare at her thinking why does this precious angel have to go through this but they are strong and God has given them to us for a reason even if we do not know what that is.

Secondly I cant believe the doctor would tell you that he is happy and healthy one day gone the next. What ever happened to tact? lol
I dont think it is that drastic. The life span increases all the time and they are always coming out with new things to improve the quality of life. Has Zach been healthy so far? How does he do? I will tell you the same thing I told Sean anytime you need to talk or vent feel free to email me at Tdim5@aol.com.

It is not easy dealing with all of this alone, it is good you have a sister to help you out.

Take care,

Teri

 

[rachelsmom]

Jason,

First of all I cannot even imagine how a mother could do that. I know someday she will have to regret that decision. I also know how it feels to bear the burden of CF on your own. It is not an easy task. I also have family to help out however even for them it is hard to understand the same things we go through. There are many nights I lie next to my daughter and just stare at her thinking why does this precious angel have to go through this but they are strong and God has given them to us for a reason even if we do not know what that is.

Secondly I cant believe the doctor would tell you that he is happy and healthy one day gone the next. What ever happened to tact? lol
I dont think it is that drastic. The life span increases all the time and they are always coming out with new things to improve the quality of life. Has Zach been healthy so far? How does he do? I will tell you the same thing I told Sean anytime you need to talk or vent feel free to email me at Tdim5@aol.com.

It is not easy dealing with all of this alone, it is good you have a sister to help you out.

Take care,

Teri