Please help

[lbarnhil]

My daughter was diagnosed with CF about two months ago. We are doing very well. She has just recently began taking her enzymes without a fight....finally. Our daughter has a spit-fire personality, and doesn't do anything against her will without a true battle first. This same is true with her nebulizer treatment, my husband and I used to have to hold her down to get her to finish it...but she has just recently began sitting patiently.

What I wanted to know from other CF families is do you also find it stressful...all the medicine and doctors visits? I am worried that my husband and I are not handling the stress properly, I am truly afraid all of the added stress is going to trouble my marriage. Do any of you go to support groups....do they help? Or is there anything else that is helpful?
Thanks,
Lynsey -daughter 20 months w/CF

 

[anonymous]

Oh yes, we find it all to be pretty stressful! I get much more stressed out than my husband does but that is partly bc he is a calm, relaxed person (what is that called, Type B??) and I am a nervous nelly type (Type A?) and then the other reason for me being more stressed is that I am a SAHM so I am with our daughter (22 months) practically 24/7 and I put a lot of pressure on myself.

Our daughter was diagnosed 10 months ago and it has gotten a bit easier since then bc we have all gotten more used to everything (enzymes, nebulizer, appts, etc) but we still have a ways to go! I think that once our toddlers are a bit older, things will be more manageable bc it is just about impossible to reason with them at this age. We try to make everything fun and that really helps Sydney. She now loves to carry around a disposable neb mask and give "treatments" to her babies and then she shows them how good she can be when she does the treatments herself. Anyway, I am sure that the stress will always be lingering nearby us, only in different forms as Sydney grows and it is just up to us to figure out how to deal with it.

The past 10 months have been the most difficult time for DH and I as far as our marriage...we will be married for 5 years this summer and until last June when Sydney was diagnosed, we had somewhat of a "fairy tale" life...so it was quite a shock on us as a couple to have to get used to this and we are still dealing with it now but it has gotten much easier. We just try to make the most of everyday and we do it not only for Sydney but for ourselves too bc we don't want to look back and find that we have wasted good days/years.

Had I read your message a few days ago, I am honestly not sure how I would have answered it bc I was having a REALLY rough time then but today things are better...so I am thinking more "clearly"!! I just try to take it a day at a time!

Feel free to email me if you ever need support!!
Hugs,
Kelli (mom to Sydney 22 months wcf)

kellimmyers@hotmail.com
<a target=new class=ftalternatingbarlinklarge href="http://sydneymyers-ivil.tripod.com/">http://sydneymyers-ivil.tripod.com/</a>

 

[anonymous]

Thank you for your reply. Its good to know that other people have similar issues. I definitely need to remember to take one day at a time. This forum has been a big help...being able to read other peoples thoughts and feelings. I plan to read and post here often.

Lynsey-mother of Avery 20 mos w/CF

 

[Purplelungs]

*warning* this is kinda long:

I am not a parent but a cf patient. I just want to say that you should definatly take one day at a time. The both of you (lynsey and Kelli) have just barely known your children had cf...its going to take a little while for things to level out and get used to things. Kelli you know this already as you stated its getting a bit easier just because the new routine is getting in place. I think thats the hardest for parents is getting the babies used to such a new routine.

As far as marriage goes communication is key...i know i know everyone says that. But if you keep things bottled up (both husband and wife) it can erupt at some point and things will just get worse....bottling things up isnt good for your mental health and mental health affects your physical health. Sometimes husbands need to know how your feeling and told you need help, sometimes (guys i am saying sometimes) they just need that nudge because they really dont know until you tell them...they also think more logically than emotionally especially times of crises their logic turns on and emotions turn off. Its a fact thats been studied most men can do emotion and logic at the same time and women tend to think more emotionally. So you need to talk to each other about everything, if he isnt willing to talk ask him if he would just for you and tell him how important it is for you. Also another key thing is you need alone time. Set up a date night every week or every two weeks. Its sooo important especially after having kids you need that alone time. I think even more important when you have the stress of a sick child. Dont worry your not being selfish in needing alone time. Its important to marriages. Alot of couples tend to never have any kind of alone time once kids arrive and the rest of their relationship is about the kids and not each other. Nothing wrong about kids but sometimes marriages start to crumble when they cant focus on each other. I mean thats why you got married is to be with each other, and if you focus some time on each other your kids will benifit. So please set up a date night..now this doesnt mean going out spending lots of money..no...go have a picnic just go walking together, just get out of the house for a few hours just the two of you. Get a friend to watch the kids. I know this is especially important for stay at home moms....you need to get out some and have a special time. You may say how would i know? Well I have been married 3 years...i know not long....but I do know that if i keep things to myself its harder on myself and when I talk about anything i feel so much better just knowing he knows. Also I am a stay at home wife and even though I dont have kids to take care of getting out of the house just the two of us is such a wonderful time. Oh and another thing is to try and keep the spice up (not really sexually) but be fun and things like that when dated. Leave notes for each other just saying I love and apprciate you can make a person happy for days. Yes its easier to say than do but what can you loose if you try any of this. If it doesnt work it doesnt work. Best thing to do is find your niche that works for you as a couple. But key words really are communication, date night, and showing your appriciation for the other. Probably alot more but those are the good ones. OH I almost forgot you have to fill each others "love tank" lol no no its not gross...its whatever makes you feel loved, be it gifts, notes, cuddling, just saying i love you all the time...make sure you do those things for each other.

Sorry for going on and on.

 

[anonymous]

Thank you for your comments...you are exactly right. And I appreciate the thuroughness of your reply.

Lynsey- mom of Avery 20 mos. w/CF and Rhett 10 wks. (still waiting on DNA results)

 

[anonymous]

Lindsay,

I think it's perfectly normal to feel stressed! The stress of having children - period - can be very stressful. Add CF to that mixture and it can be very VERY stressful! My hubby and I tend to be the "type A" stressed out personality type parents, so we tend to overreact to my son's different needs. During the first year of our son's diagnosis, our social worker strongly encouraged us to seek counseling. We did this not only for our marriage, but for ourselves! We were both handling the stress and devastation so differently and were slowly pushing each other apart. Sadly, it wasn't IF we'd divorce, but WHEN. We've always had an incredible marriage, but this diagnosis took it's toll on us for several reasons. Going to a counselor was our last option. Had we known how much it would help, we would have seen one long ago. I would STRONGLY encourage any couple rasing a cf child to not rule out professional counseling/therapy. It's not a crutch. Depite the stigma that comes attached to it, it saved my marriage...and actually my life. You owe it to yourself, your child, and your marriage to get some outside help. If you don't "click" with the first person you meet with, don't be afraid to shop around. I've found it to be most helpful to get a referral from either a friend or your cf social worker. Hang in there.

 

[anonymous]

That is good news that Lynsey is adjusting to enzymes. My husband and I have a 3.5 year old girl and a 20 month old boy that both have cf. My children loved the baby Einstein videos and Cedarmont kids videos. We have had to hold down our kids for treatments as well. Not very fun.

Having little kids is stressful enough on a marriage. Add cf and it GETS VERY STRESSFUL at times. Fortunately, my husband does not let cf get in the way of anything, marriage included. He says he hardly thinks about it. I, on the other hand, stay at home with them (and love it by the way!). He helps out with treatments; but I am in charge of ordering medicines, going to doctor appts, etc. So I deal more with cf than my husband. I am more emotional and let cf get in the way sometimes.

I think one of the best ways to deal with cf is to look at the blessings that go along with the diagnosis. For example, I really believe both of my kids would not be here if they had been born a few generations ago. They both had difficult first few months of life (meconium illeus, failure to thrive). If you concentrate on how blessed you are and not the negatives that the cf diagnosis brings, then life is much easier. Once you accept the diagnosis, adjust to life and move on life is easier. My kids go to school, swim lessons, dance, Sunday school, etc. My friends do not see how our lives are different other than the fact that my kids receive enzymes. It is, however, very different as you all know. I want everyone to see them for who they are, not just their diagnosis.

For us, both of my kids were diagnosed as newborns, so we never had the opportunity to think our children were healthy and then received the news that they weren't, so it might be a bit different for us. I also try not to talk my husband's ear off about cf. He really doesn't like to hear me complain, so it helps to have someone else to talk (I have a twin sister) with about the frustrations of havings a child(ren) with cf.
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf

 

[2sickkids]

My other half always gets moody and upset when our boys are sick it drives me nuts. Because, he will not told about it.

Sharon does your sister have cf kids to?

 

[anonymous]

"Sharon does your sister have cf kids to? "

No, my twin sister has three kids but they do not have cf. My husband has one sibling, a brother. His son was also diagnosed with cf at age four a month after my daughter. So I do have a sister-in-law I can also speak with about cf, but honestly it is not her favorite subject so we don't have a lot of conversations about cf.
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf, aunt to Joseph, 7, with cf

 

[tapestry]

My daughter Cassidy was diagnosed with CF a month ago. Before that we thought we had baby troubles because we thought Cassidy was allergic to dairy and soy. Everthing about our diets had to change (she's breastfed still so whatever I eat she reacts to). Ever since she was a month old we've been on a restrictive diet. And that was stressful and upsetting. And then came the CF diagnosis - and suddenly I'd give anything for my daughter to just have a food allergy and nothing more.

The stress level in our marriage has gone through the roof. My husband hates that our house looks like a pharmacy we have so many medications. He hates the expense of it all. He hates the inconvenience of giving treatments every evening and night - of having to tote enzymes and applesauce everywhere we go. In addition we're pulling my daughter out of daycare because she keeps getting sick so often. Unfortunately I can't leave my job because I have the better paycheck and insurance. So my husband will be staying home with Cassie starting a week from Monday. He's scared and anxious - not sure if he can do this but determined to try. There is a whole lot less time in general because of treatments and such and that adds another level of stress - when you add in chores it seems like we never have any personal time.

I think the idea of having a date night every couple weeks is a good one. And a bit of personal time for each of you individually through out the week. I take a couple hours every Satruday morning to do whatever I want - no baby, no husband, just me. John takes his personal time too. Without it we'd be in danger of losing ourselves and becoming buried under this illness. We talk a lot. Sometimes they're good conversations and sometimes not. I think we will be seeking a therapist just to help work out some of the issues John staying at home will raise. In the end you have to do whatever you can to keep the two of you sane - because stressed out parents have a way of passing that on to their kids.

As for treatments - I let Cassie watch Baby Einstein videos durring them. It's the only TV time she's allowed and I make sure she's snuggled against my chest. I'm trying to make it Cassie's special time with mommy when it's the two of us snuggled on the couch as I talk to her and she watches her videos. She is very calm about treatments and has even learned to settle down for CPT. I hope she stays that way with her treatments! She hates taking her other meds though and getting the liquid meds down her is always a chore.