Our Little Jacob

This is a blog detailing the daily struggles of having a child with Spastic Quadriplegic Cerebral Palsy. My son is 1 of 2 surviving triplets. My son and his identical twin brother Logan who passed away at 6.5 months old had Twin to Twin Transfusion before they were born. They were delivered at 28 weeks to try and save all 3 of their lives. I have a hard time connecting with other parents raising children with severe disabilities so, I thought I would branch away from my other blog to blog just about my son and his special needs in hope of reaching out and supporting other moms dealing with similar issues.

Wednesday, November 7, 2012

The Vanishing "Friends" of the Special Needs Parent

I've been feeling rather bitter lately thinking about all the so-called friends I used to have. As I look though my phone's contact list where I used to have a list to scroll down of people's contact info. People I used to hang out with, go shopping with, dinner together etc. Now those names slowly one by one have been deleted from my life and replaced with doctors offices, schools, and therapists' numbers. Where I used to have someone I could call upon at anytime when I was bored, feeling the need to go blow money etc, there is only a small handful of 3-4 people that have stuck by me and listen to my rants about my daily struggles.

In recent months I have really looked at who my friends really are.
  • You have the true hard core friends that will go out of the way for you as I would for them dragging there 2,3,4 kids along with them. Your lucky to have 1 of this type friend in your life I am lucky to have 2 not counting my family members.
  • You have your convenience friends...these "friends" new and old that only call or talk to you if they want something from you or have a question. Rather it be money, free food, extra medical supplies, baby sitter, etc.
  • Friends of similar circumstance...I have made a lot of these friends local and distant. These for me are mothers of multiples or of a disabled child. Great for support, but most are not ones I call and talk to...mainly we all have to many children combine to see each other in person. LOL
  • Co-worker friends. Yeah I was really disappointed in this area. I had a lot of co-worker friends. Used to go out and have a good time after work on the weekends, get invited to each others kids parties and various other activities. I was really hurt when I delivered my baby at the same hospital I worked at and not ONE person went out of their way that I worked with to visit or even call. I did get a baby shower before I left so I know they do care. I have little to no contact with most of these "friends" since I left my job 6 months ago. I do have a select few that lurk(on facebook) but we don't talk like we used to. I did feel good that I got invited to one of my old co-workers good-bye lunch after she was laid off. For the most part outside of a few facebook lurking old co-worker friends I have been abandon.
  • Then there are the facebook only friends. I have people I have given a lot of myself to in the past that have friended me on facebook, and comment, but basically want to know your business but really nothing to do with you personally. I'm guilty of this myself. I enjoy seeing updates of old high school friends etc and staying connected.  I have facebook friends that I talk to more on FB, texting and phone more so than some of my local "friends".
  • Then there are those friends that just flat out abandon you...people that you once thought of as family, people that you used to talk to on a regular near daily bases, that just stop calling and respond to text etc. This hurts. Makes me wonder what I did wrong. I feel like I am in a different "class" than some of these people now. I don't fit in their click because our incomes are different, to many children, children that aren't "normal", mainly just feel unimportant to them anymore. They have taken what they could from me and no longer have a need to talk to me.
This being said. I recently went down my facebook list of "friends" I have really NO friends that are not of facebook. It really opened my eyes to how many people have been in my life and moved on at one point. I have had a lot of people come in and out of my life. I realized then how little true LOCAL friends I really had. I have made quite a few friends from different parts of the country that have shared like stories as my own, that I can talk to about everyday life of for support. Tons of people friended me for updates on the triplets and Jacob in general mostly. I spent hours weeding though people, deciding who really should see what I post and pictures I post. The point of my blogs was to update on my family, so I don't really see a need for strangers to see everything in my social network. I unfriended a lot of high school people that I was never really friends with in high school, I unfriended lots of people that I had no freaking clue who they were, I unfriended people I once loved as my own family, but realized they don't really care about me or my children. My list of 250 people is down to a mere 100 or so...lol mere 100 he he...I think it is weird that I can actually tell you how I know each and every one of those people if their name popped up, but no way I could name 100 people I know off the top of my head.

After over 3 years of battling depression and financial hardship, I think I am finally ready to stand up again and move forward. I have been living my life in idle since I was pregnant with the triplets. Once they were born early, I felt the world revolved around their health and well being. Then after Logan's death, the world revolved around Jacob's health and therapies. poor Andrew has always been the odd man out and now demands his attention.  Now that Jacob is 3 and has lost home services. 3 of my 4 living children are in school now. I have had time to rest, time to think, time to regroup myself and wonder what is next. I still feel stuck, that I can't work and have lost my career for right now due to childcare and Jack's schedule. I'm ready to embrace my true friends, not enable people any longer that always wanted to take from me and were never there to just be my friend, maybe become more involved in my children's schools (though I think they hate me...true story), ready for walks in the park, lunch dates and to just live and enjoy life again with my children, my husband, my family, and my friends. I will no longer dwell on who I feel is not my friend anymore. I will simply delete them from my life. LOL I really spend to much time on facebook.

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