Staying the course

[Ann]

Hi -

I was getting ready for work today and doing those things you do to get oneself ready - Â*which of course forced me look in the mirror and I thought, gosh, I look so old! Â*Jack has only been in my life for 5 years, but I swear IÂ’ve aged 15 since he was born (5 of those years in the last month!). Â*Granted, IÂ’m one of the oldest moms on this board (40-ish) and most of you are still legitimately considered “young”. But, IÂ’m wondering how many of you feel as if youÂ’ve aged beyond the years youÂ’ve actually had your trach child in your life? Â*IÂ’m sure just the lack of sleep alone, but also, the constant worrying, the dealing with life and death on a daily basis, the unknown, the known (insurance companies and DMEs), all these things obviously take their toll on our bodies - those things we canÂ’t see and those things we can (like gray hair and wrinkles!!).

Anyway, I'm just wondering what you all do to help yourself Â*“stay the course”. Â* I know there are things that we all SHOULD do (i.e. sleep, eat right and exercise), but what, in reality, DO you do? Â*Or, what would you do if you could? Â*At least once a year I try and go out of town for a weekend by myself to visit friends or family. Â*However, the guilt of leaving my husband with all the responsibility of the kids makes it almost not worth it. Â*I truly think IÂ’ve forgotten how to have fun. Â*Can any of you relate, or am I just off my rocker (donÂ’t answer that). Â*

It is my plan in the very near future, after the conference is over, to set up a non-profit organization that I envision being a scaled down make-a-wish for parents and caregivers of chronically ill/medically fragile children. Â*I would like to be able to offer parents like us a day at the spa, a weekend at a resort, a dinner out with our significant other, and things of that nature. Â*I have these grand plans of someday this being a national organization much like Make-A-Wish. Â*I just donÂ’t think we moms and dads get the respite we deserve and need in order to do our jobs day in and day out.

What are your thoughts?

Ann

[akabot]

Ann,

There are two main things that I think have saved my marriage and my sanity (at least most of it):

1. My faith in Christ

2. Biweekly nights out with my husband. We have a nurse that works a four hour shift every other Saturday night so that we can go out. I had a hard time trusting her to be with him without us in the beginning, but I gradually got used to it. I know that I can trust her to call me if there is a problem and we are never more than 15 minutes away. I also have my sister living five minutes away and she is always willing to babysit for us if needed. I feel guilty leaving Corey with other people and giving them that responsiblity, but at the same time I know that my husband and I need it so badly.

I really like the idea of your foundation. Parents of healthy children do not understand the physical, emotional, and mental toll that having a medically fragile child takes.

I hope your dream comes true. Funny that you mention being aged beyond our years. Ironically, many of my nurses come a little early for their shifts just so that they can talk with me about their problems. It feels a little awkward for me because they are all my parent's age, but I guess that's what comes with living a lifetime worth of experiences in a few short years.

Amy

[annerae63]

Hi Ann-
I'm with you-I feel as though I've aged at least 10 yrs since Evan was born 3 yrs ago. I too am "40-ish" and I feel every year of it. I never gave age too much thought until these past few years. Granted, the stress of the trach is not part of my life anymore but we do have other issues that we struggle with in regards to Evan and that we struggle with just like everyone else-finances, marriage, etc. While I don't necessarily eat right all time nor do I get enough sleep, I have found that just getting on my treadmill 20-30 minutes 3-4 times a week really helps me mentally. Now that's its nice out, I enjoy taking walks outside with or without Evan. Don't get me wrong, I am far from being any type of exercise fanatic-but it really has helped me cope on a day to day basis these past few years. I do dream about spa days and weekends away though-I'm positive they would help me out as well!

I think your idea of a non-profit organization is wonderful-I'm sure you of all people can make it happen!

[Jacob's Mom]

My husband and I also have biweekly date nights. Â*Jacob's nurse comes every other Friday evening. Â*It allows us to catch up and just talk about things. Â*It is sooo nice. Â*We are also planning a weekend trip to the FL Keys next month for our anniversary. Â*As hard as I know it will be to leave Jacob, I am very much looking forward to it. Â*I also find that exercising my body keeps my mind fit. Â*I run and weight train 5-6 days a week and it is a tremendous help in keeping me sane and energized. Â*

Although I am one of the younger moms here, I also feel as though I have aged beyond my years since Jacob was born. Â*It is a very stressful and demanding, physically and emotionally, job that we have caring for these children. Â*I think your idea for caregiver respite is just fantastic. Â*I don't doubt for one second that you can do it. Â*You have incredible skills and how-to for organizing and putting a plan into action. Â*I wish you much success and I hope that you are the first to benefit !

[nicksmom]

Ann~

I am so with you especially today. Â*My body, face, brain just hurt! Â*I would love to sleep like I did when I was in college but that will never happen again. Â*I have been feeling very down and drained lately but just keep blaming it on the LONG winter. Â*

I don't get a chance to do much, we don't have anyone to help with Nick anymore. Â*Since we lost our nursing care we don't have a babysitter. Â*My mother-in-law keeps him two days a week while I work but she meets me at the door when I come home and we don't want to intrude on the weekends so we've never asked them to help. Â*My family lives so far away that they can't help. Â*The one thing I do for myself is my bi-weekly pedicure with an extra foot message. Â*It's the only thing I have the time for and my appt. is usually on my lunch hour during a day I'm at work. But that foot message sure is nice Â*I need to start doing something about myself, I feel and look like my grandmother.

I think your foundation idea is the most wonderful thing I've heard. Â*When you are ready to start let me know, I would love to be part and help get it started.

Take care
Carrie

[abby]

What a great idea to start a foundation. It's so hard to believe that there isnt one out there already!
Im fortunate to have nursing mon-thurs days but I find that I dont want to miss out on Jared's awake times so I find msyelf not getting out enough.
My indulgences are napping when she is here
I try to get out once a wk or every other to at least walk around the mall or something and indulge myself in a good lunch (with or without company)
When DH comes home and Jared sleeps sometimes I soak in a long tub
Im jealous of you who have date nights with your husbands. We dont really have any night nursing help or wkend day help so we have gone out only twice since Jared has been home (3 months)- That is what is def. lacking in my life !!
Great question ann

[Esties mom]

Well I hate to admit it I am problably older than any of you. Lets just say I have been married 31 years and even to same man. I have raised many special needs kids but Estie is my first on a vent. Yes it ages you. I think the care of a child with a trach or vent demands so much attention that it brings you with a bond deeper than any other child you may have. It its something you really cannot expain to other people. As far as getting away all I do is worrry about her so I do not enjoy myself. Any suggestions on how to deal with that. Esties mom

[Jessica's Mom]

Anne,
I know exactly how you feel. Jessica will be 2 in July and I feel as if I have aged 20 years in the past two. It's not just Jessica either, though the stress of her is enough in a lifetime, these past few weeks have been hell. The state attorny general's office wants to meet with us to take our statement on what happened with that nurse that was here defrauded the insurance company, my grandmom was in the hospital with a blockage in her intestines, now she has a colstomy bag, my husbands grandmom was in the hospital on a vent with breathing and heart problems, she is home for now and my mom - 54 years old was just told she has stage 4 lung cancer.......When you figure out what to do to "stay the course" let me know, because I need to do something!
________
GAY ANAL TRAI

[j's mom]

I am right with you guys and it's funny how this topic came up. We just got some pictures back from Easter and when I saw the "crow's feet" wrinkles around my eyes, I couldn't believe how old I looked (and feel most days)!!! I guess I'm in the "thiry-something" range and it seems a lot older. And it has been a long winter for sure, so that has not helped.

I always say that I'd like to eat better, walk more, do some kind of exercise, read a good book, but I need that motivation! I love the pedicure idea, as well as the foundation for parents. I'm glad you brought this up, Ann, because maybe it will be that motivation for me!
I'm glad you guys understand "my world"!
Tracy

[ben's mom]

Oddly, it seems that working keeps me sane. I am an elementary school teacher. The first summer Ben came home from the hospital and I was home all summer, I almost lost my mind. Constantly dealing with all of Ben's issues all the time is just too much. Going back to work (Even though that was very difficult to do) gave me a mental, and physical break away from all that. Of course, I feel torn all the time. Although I don't necessarily feel physically older at this point, I'm definitetly no longer on the same plane as my other friends with young kids. Do you ever notice how other people with "normal" kids never seem to apprectiate what they have?
I think your foundation idea is a great idea. My husband and I have made many plans to do something fun for ourselves, but 9 out of 10 times something happens and we have to cancel. We've almost stopped planning for fear it will put Ben in the hospital