Need advice

[Zoe's Mom]

It seems like you all know each other so well, and I don't know too many of you, but I have a situation I need a little advice with and don't know where to turn.

We've been home from the hospital since May 3rd. Ever since Zoe got her trach, my friends have been disappearing. I am under the impression that we are a little "heavy" now for some people-I am in that stage of my life where I have a baby shower every weekend. We also aren't very mobile, as Zoe can only be on her HME for 2 hours 2 times a day yet. My husband works long hours, and I am really becoming increasingly lonely and in need of some social interaction-the nurses just don't cut it :-) I try and make plans with people I knew in my "former life" but seem to get blown off. I have tried to make everyone comfortable by offering information and visits to see Zoe looks like any other baby. Did this happen to anyone else? How did you handle it? I'm not sure if I should say anything, I don't want to force anyone to spend time with us.

Thanks for listening!
Lora

http://www.tracheostomy.com/iB_html/non-cgi/emoticons/confused.gif

[annettevz]

Lora,

BIG HUGS!!! I'll be your friend!!!! The exact same thing happened to me. I barely talk to anyone anymore, besides my mom, the nurses and therapists. It's kinda lonely, but I've gotten used to it. You're right, you can't force anyone to spend time with you. A lot of people are just uncomfortable being around kids with special needs. It's really too bad since our kids are the sweetest little things around!!!!

Annette

[CamdonsMom]

You know I have been talking to my family about the same thing. I just moved back home, and I was telling them how nice that is because all my friends but 2 have bailed out on me. I just don't know what it is about people and their stupidity, lack of compasion, and shallowness. I am sorry you are going through this, because I know that it is a hard thing to go through. When I was living in Houston (I hated the city) and felt like there was nobody that could relate to me...so this site and the trachties listserve has been my saving grace. I would love to have a girlfriend that would go out with me, but, I am just going to have to find new friends...mybe one that has a special needs kid as well.

One thing that did help me was to get out of the house. I would go get sushi every weak. I hated being alone, but it helped me to pull myself together. I know that you will also feel isolated from your husband as well. Just work through that, because it will get better.

Feel free to email me...when I get settled I will give you my phone number. But, email me yours and we can talk.

Much love and support...Tanya
tlujan1@hotmail.com

[sandra]

Boy can I relate. I taught school and all my friends are teachers. They are so busy during the school year. I don't think it is intentional, but I do think we are "heavy" for them. That is a good way to describe it. Basically, when I am really feeling that way, I try to contact them. I just call and say, "Hey, I'm feeling lonely. What's going on?" I usually feel better afterwards and it confirms that they are just busy with their lives. My very best friend before all this happened has really pretty much disappeared. I wish I lived near someone from this board, because I could really use a friend who "gets" it.

This is a lonely situation. I'm sorry you are feeling it, too. That is why this board has become so important to me.

[Judy]

http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif It is sad that people do seem to be "afraid" of our children. And I sometimes wonder why they all want to bring their children everywhere when they are all running around, yelling, playing, etc. while ours stay put. Seems to me ours would be the ones everyone would want around. http://www.tracheostomy.com/iB_html/non-cgi/emoticons/wink.gif

I realize that eating with our Kenya close by is hard for some people. With the trach and needing suctioning often and the noises these trachs can cause the children to make does not make for a comfortable dinner. But we usually do not have her
sitting at the table when we eat with others since she is on a feeding tube and can not eat anyway.

We are often lonely but we have the greatest kids in the world and all those folks out there who stay away do not know what they are missing. I am so glad that my grown children and my precious grandchildren love and accept our adopted Angels and they love being around them. We do live 300 miles apart but we see each other as often as we can.
Dear Hubby's children and family members are NOT as accepting as mine are but that is o.k. We are the lucky ones.

God Bless You and please e-mail me any time. Would love to be your on-line friend. Love from all of us,

Judy, Ken and the 5 very special Angels http://www.tracheostomy.com/iB_html/non-cgi/emoticons/angel.gif

[Jacob's Mom]

"Heavy" is certainly a good way to describe it. I lost almost all of my friends. They just couldn't handle it. I believe what has really helped keep me sane is reaching out on line, especially here on this board. I have met some amazing people and made great friends - who do get it. And the long, lonely days - I have been there. Still am sometimes. I can't say the loneliness gets an easier to deal with, but you find ways to adapt.

If you ever want to chat or talk on the phone, please feel free to contact me. My e-mail is dhahjh@earthlink.net.

Amanda

[Jen3]

Hello. My heart goes out to you. I to have been and am in the same situation. I am a very open person and am willing to give out my phone number to you here on the open board b/c I trust this board and the people on it so much. I am posting my number for you and anyone else that needs a friend. I am the president and founder of the Wayne Count Indiana Mother Mentor Program. I live to help other parents of preemies and special needs kids. I love it so much. So you and anyone that wants to can write my number down and feel free to call me at anytime for anything. To vent, for advice, or just a understanding person. I am in Indiana as I said and am probably a hour behind most of you so feel free to call me up to Midnight my time any time!! 765-855-3625

Hope this helps you and lets you know that there still are caring people in the world!

Hope to hear from you soon. If you do not have long distance you can e-mail me your number and a good time to call you and I will call you. Here is my e-mail.
jenwalker@pureromance.com

I hope I have not been to forward but as I said this is right up my alley to help people!!

Jen

[twintotwin]

Jen - that is so nice of you, maybe one of us will take you up on your offer.

Lora, you are not alone as everyone has said. When I became pregnant w/my twins it was at a time in my life when my DH and I were going out all the time to parties and bars with our friends. That slowed down obviously b/c I was preg. but then when I had the boys 3 months too soon, everyone came running and throwing flowers at us left and right...candy, cookies, phone calls, letters, emails....then after 2 months they slowed down and then there were none.

We were in a really bad place at that time. I had the twins out-of-state while on vacation. I was stuck in this strange city for 3 months, no car, no idea where I was, no friends at all and severe PPD, and not knowing if my babies would live to see our home. That was lonely. My DH had to drive back up home 7 hours to go to work, he came back every weekend to see the boys fighting for their lives in the NICU. The phone calls stopped. The offers to drive down and visit me fell through.

Then we came home (the boys were transferred to a new NICU in NJ where we live) and I was able to see my friends and family, they came to visit once or twice...then I suddenly noticed they too were gone. Another 26 months would go by with my boys still in the hospital, no one came to visit A N Y M O R E . Not even my own family. Real freaking sad.

Well it was at this time that my DH and I decided to buy a house down south NJ one hour away from where we lived.

Now I am SO isolated it is extremely disturbing. I want to cry sometimes, when I feel sorry for myself, that my friends really have no clue what my life is like with 2 medically fragile sick kids. They do not understand though they act like they do. They can't understand, you have to see it to believe it all! You have to see the argueing I do first thing in the morning with the pharmacies, insurance, nursing agencies, supply company, doctors offices (snotty people that answer the phones), EIP, schools, therapists....then the frustration of having to put a 35 lb child into a stander and a pony, to try and get him to point to his nose, to try and get him to find you when you call his name and...of teaching your child who is almost 3 years-old to walk!!! Who understands that!? You all!

Instead of going on and on b/c I can do it...I have a lot to say. One day I am going to write a book about my life and it will be longer than War and Peace.
I am going to tell you to stick to the board. It's the best support you can get right now realistically. I've met at least 4 moms from the board that live in NJ that I can talk to whenever I need to, they can vent to me...I have one friend from the board who came to visit me in the hospital when I had my newborn (thank you Carrie)...it made me feel so happy and supported when I saw her come in that door. Where were my pre-sick babies friends????

This is what your life has come to be. Make the best out of it if you can. I always reach out to the moms on the board when I learn they are from NJ b/c I might need them for support and they might need me one day...they may have the same thing happening to them! No one has told me no here.

Love to you Lora!

Kerry

[Whitney]

Lora

I can't add much beyond what everyone has already said except that I know exactly how you feel. Few people understand everything that is involved in our daily routine. I have found some people WANT to be there for you, but they have a difficult time on approaching the situation. A few of my friends didn't know what to say and how to react. Still, others had no interest in being a part of my new life. I remind myself that they were not really true friends anyway (cliche yes, but true). I would start by talking to your friends and explaining how you are feeling by their actions and lack of participation. Once you let them know how you feel, you have done your part. Remember you have LOTS of support here and you can always come here for friendship. Not that it helps, but I live in Denver if that is anywhere near you. I would be happy to meet you. I hope you find some peace and resolution with your friends.

Whitney

[McKenna&clan]

What's the saying...about being in a room full of people and feeling so alone? I believe everyone here knows what you are going through but there aren't many solutions to the isolation and loneliness. I found that many friends rallied around me to begin with...then just disappeared or missing in action. When I see them there is always the polite exchange of "Oh, how is McKenna and how are you?" I give the polite response of "She's coming along fine...perhaps a few more surgeries...everything is peachy." But the real me wants to say "DO YOU REALLY WANT TO KNOW...that my nurse couldn't come last night and I've had hardly any sleep...my anxiety attacks are getting closer and closer together all the time...I can't stand the quiteness of the house even when McKenna is sitting right in my lap."
Some days will suck, some days you will cry...and some days you will be so thankful that even though you have lost so much...you really have so much more. Try to distract yourself, try to find a "special needs" group in your area. Ask your nurses, your doctors...look on the internet...and don't ever stop talking to us. We know and we are here for you.
BIG HUGS,
Janet

[butterfly]

I see that everyone has passed for the same situation, So have I, The very good friends stayed, I had to explain that the coughing and flemas going out of the trach are normal, I want to think that they got scared at the beginnig, and with my explanations they got used to it, I am the only one taking care of her, it's been a year since the trach, and I spent the first half at home, going out only a few hours at week, then this summer came and we go outdoors, I go to Mc Donnals, and other places like that, I don't like how peolple stares at us but I just ignore them, BECAUSE I HAVE LEARNED THAT WE ARE THE LUCKY ONES BY HAVING SUCH EXPIRIENCE WITH THIS KIDS.
I know that only you moms understand the way we feel about this, NO ONE ELSE DO.
What have worked to me is writting a big letter, or book, to her, of her own story since she was born, you'd cry in every word you write but it helps and he will love to read it some ay
Consider me as your new friend, I am new in the board too, and I really like the way all support us.
big hugsss
PAOLA

[Zoe's Mom]

There are no words to explain how you all have made me feel responding to my post-I didn't expect such an outpouring of friendship and support. Thank you to everyone who offered phone numbers and advice-I will get back to each of you who offered as soon as things settle down today.

I can't thank you all enough for making me feel better and feel part of your circle of friends.

Lora

[Carriestockmal]

Everyone has given you the same advice that I would too, but I wanted to post so you know that I care and I understand!

[hcs_mom]

The life we lead can be sad and lonely at times...but then I watch my sleeping angel...how peaceful...how miraculous...and I know that those who chose to walk out of our lives are depriving themselves of knowing one of the strongest, smartest, most beautiful kids around.

For some people, dealing with these situations is just so uncomfortable. They really don't know what to say, to do, or how to act. And out of fear, many people just fade away.

I have found this board to be so supportive and helpful and I found a local mom to help me along as well. Finding another mom was a saving grace. Not sure where you are...I am in Cincinnati.

Come to us often for support, share your joys and sorrows or to just vent. That's why we are all here.

Jennie

[arielsmom]

Lora (and everyone), I'm sorry it's so lonely right now. Â*The first year with Ariel felt very alone and isolating. Â*Since then I feel like I have developed an amazing support network. Â*I definately sought it out for myself. Â*I joined a support group for parents of kids with special needs, we have become really tight and are always there for each other. Â*I have met so many amazing people in the special needs community that I am so grateful to know and that truly understand what I am dealing with. Â*We also really lucked out with our nurses and they are like part of our family now. Â*One even moved into an extra room we have downstairs and she is more of a friend now than anything else, she is a part time nurse and a full time musician and brings such great energy and music to our house, not to mention a seemingly endless stream of other musicians. Â*Ariel absolutely loves it!
My advice would be to try and find a local support group, it really changed things for me.
And of course..Keep coming here!
xo
Karen