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 <img src="i/expressions/face-icon-small-smile.gif" border="0">. 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]

I can tell you that just reading the Spriit of Lo can make you bummed out. This is probably not a book I would recommend to a mom w/ a newly diagnosed child w/ CF. My sister had CF & Lo's story was her life story too. I have CF (& am 38) and have really had a pretty easy go of it, so my point is that each person w/ CF is not going to have the life that Lo did & God Bless her, I saw just a few weeks ago that she is still plugging along and I don't think she's had a transplant yet either. She is such an encouragement, but it's a hard book to read.
I read it & had my mom read it & she said it brought back way to many memories of my sister's childhood & that it made her kind of depressed. I wonder if it's made you this way too.
I bet you are just bushed and sometimes feel like you can't push yourself any further w/ an ill child & a full time job. Remember that God gives us the strength to handle things. That's what gets me through alot! Do you have parents near by that you can lean on, talk to, etc?
I will keep your daughter & you in my prayers.

 

[anonymous]

Teri-
I can relate to your situation very well. I too am a single mom. I have 3 children 19,18, and 14. My 18 year old has CF. He has been sick most of his life and has very few "good" spots. Whithin in the last 2 years he was also diagnosed with CFRD and Cepacia.
The feeling of working all day, coming home caring for my Cory, taking care of the other children, the daily household, etc....It can get very overwhelming and exhausting.
Just a few words to know that you are not alone. Hang in there<img src="i/expressions/face-icon-small-smile.gif" border="0">
Michelle

 

[anonymous]

Teri,

I have a 12 w CF. 2 years ago, He was hospitalized 3 times in less than 12 months. I felt much like you, trying to work and balance his hospitalizations and the inevitable thoughts of "is this the beginning of the end". The unanswered questions: the things that noone talks about but we all think at one time or another. The facts that I have to work to pay the bills but I want to spend all my time with him. I am happy to say he has been IV free for over a year now!!!! and life is good....my moods are often determined by his health. AS a mom I think this is normal. It is good to have a place to be heard and to hear there is a light in the darkness. Keep trudging through....you'll be on the other side in no time. If HE brings you to it...He'll bring you through it! God Bless you my friend. WE are with you in spirit....you will never be alone.

 

[anonymous]

Dear rachelsmom-

I feel like I am going to be you in about a week. I am a 40 year old single mom to a beautiful 9 week old baby that I am adopting. Two weeks ago he had a seizure and was diagnosed with meningitis, abnormal liver enzymes and failure to thrive. He spent a week in the hospital and I slept on the floor and ate tic tacs while the hospital ruled out brain tumors, epilepsy, etc... Now, they suscpect CF. We are waiting another week to do a sweat test as he is only 9 weeks. I am scared to death-all of his symptoms match CF. I too work full time trying to make ends meet. The hospital bills (2 hospitals) will be over $100,000--I will owe as much as $30,000 with the co-pay. I am slilently panicking as every minute ticks by and they rule out more and more conditions-but not CF. Where do you live? We live in Los Angeles. I could really use a friend right now who doesn't tell me that the baby is probably allergic to the cat and is 2 lbs underweight because he has "good metabolism."burkesmom

 

[redeemedchild]

<FONT face="Comic Sans MS" color=#0000ff>Hi,I am not the Mother of a cfer, but the sister of one. I can't offer alot of advice that is cf related, but I can empathize with the single mother part.  I am a sinlge mom of 2 (19 and 20) and a grandson (2).  Even if your kids are healthy, it is a struggle. I can't begin to imagine the difficulty of doing it with an unhealthy child.  I will keep yall in prayer.God bless,<img src="i/expressions/heart.gif" border="0">pam</FONT>

 

[HollyCatheryn]

This may sound flippant, but I do not mean it to be. If you are not already involved in a church, find one. There has been nothing that has helped me and my family more as we live with what CF throws us as our church. When I was growing up it was the same, there were times we just couldn't have made it without them. Sometimes it ismiraculous, but more usually it is mundane. Recently, while I was in the hospital for a week and then home on IV's for 2 more, my father-in-law (my in-laws are always a huge help to us) found he had more cancer and had to go into the hospital for surgery. Our churhch and the Christian school that my husband works for dove right in. They bought groceries and fixed meals for both our families (even though our in-laws do not attend this church). Some of the ladies and my husband's students have given their time to babysit our daughter so I can rest and use my energy to get well. They even took up an offering and gave it to us. None of us had asked for help and it is humbling to be loved so freely. But, that is the way a family is supposed to work. When someone needs help, the others step up. And a good church is like a good family in that way.

 

[anonymous]

Holly,
This has been my experience also, my family and church family has been there for us!!!!!!!
No matter how humbling it has been to be on the recieving end, much easier for us to be the givers,
it has been a life lesson to know that God has provided for our needs through the family of God!
Michelle, mother of three, youngest 15 yr. old son with CF.

 

[rachelsmom]

Burkes mom,

Thanks for replying. I am in Cincinnati, Ohio. Have you found out about the CF. I can only imagine how you are feeling right now. My Rachel was diagnosed at six months old and I remember we were in the hospital for 12 days until they finally diagnosed her. It is heart wrenching to watch them go through all of this.

Anytime you need a pep talk or just to vent feel free. My personal email is Tdim5@aol.com.

Good Luck.

Teri

 

[rachelsmom]

Holly and Michelle,

Thank you so much for the advice and the thoughts. It is nice to know that you're not alone. I have a wonderful church and they have since helped out financially a little bit. What a God send. We are back in the hospital for two more weeks of IV antibiotics (second time in six weeks) I guess it is just one of those bad spells.

Again, Thanks to everyone who replied. It just helps knowing there are others out there that understand your situation.

Teri

 

[anonymous]

dear rachels mom,
i used to be a single mother of not one but three cf kids chad ,4 dooner 3, and pregnant with savannah i used to think that my life revolved arond cf drs and hospitals
and to top it all off their father wanted nothing to do with them after the divorce until i met my new husband then he kidnapped them for 1 year during that year all my friends kept saying oh well at least they're not your problem anymore yeah right thats when i realized just how alone i am in my community the only kids known in five towns suuroundig my home and no one seems to understand my husband is great though it doesn't matter that i vent some feelings on him he just says they are ours to take care of and they are now 10 ,9 ,&5 and doing great after 20 hospital stays a g tube in chad but i don't know if i'm doing so great still nobody (other parents) to talk to but i'm hangging in

 

[anonymous]

Wow,

You have your hands full. It is a shame there is no one to talk with besides your husband. Maybe you could check with your hospital or clinic to see if there are other parents that have kids with CF. Maybe try starting a support group. Good Luck with them, if you ever need to vent to someone besides your husband I would be glad to listen.

Teri