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Saturday, January 28, 2012

Being my friend is tough

This is a post that I have been thinking about writing for such a long time. About 4 years and  3 months to be exact. I have always been a pretty loyal person. when I befriend someone I tend to throw everything I have into the friendship.I grew up in a family that was very close and we were also very open about our lives and feelings. I am the same way with my friends. My sister is one that has always had a ton of friends around her, I'm not really like that. I usually have a lot of people close to me but only a few that I am truly close and intimate friends with. We laugh that for my sisters 13 birthday she wanted to invite just 40 of her "closet friends" haha I wish I was more like that.

I have learned that being my close friend is apparently difficult for most. In a perfect world and situation or even just a typical one, I think it would be easier, but I don't live that life. Play dates are hard to schedule around doctors appointments and physical therapy. Joining someone for a unscheduled lunch date is almost impossible because every second of my "free time" is clogged with playing catch up. And I know that is frustrating to people because it comes across that I am distant or don't care about developing relationships I think. If only people knew how dearly I crave other mother friendship.

Before James I would have never understood a post like this. I would have been just like everyone else and not truly understood how having a child with a disability controls your schedule and life at times. Other mom's  move from stage to stage and milestone to milestone, but we are usually stuck in the same stages of life for long periods of time. And as other kids develop physically, it leaves us behind and that means that I have less and less in common with those other moms. Yes we have many ares still in common and the friendship tries to hang on. I have discovered  that as those moms move on to T-ball , soccer, karate I am still talking about James being able to wiggle a toe and the friendship stops growing. When they say " hey lets take the kids to the park after school" I have to say know because I know that James will be to exhausted. I cant do a morning play date because we have physical therapy to go to and I can do one in the afternoon because James HAS to have a nap still at 4 years old. I have plan in advance things that they decided to do on a whim.
I causes the relationship to stall eventually because they just stop inviting us.  Sometimes it is because they feel sorry for me and eventually get so uncomfortable because they don't know what to say anymore. Sometimes they start to feel that I am so focused on my son I am being selfish by not spending time with them, but most of the time the friendship just dies on the vine because they have moved on to a different aspect of life and we are still working on the basics.

Don't get my wrong it isn't all them. I hold responsibility for this happening to. I am totally focused on James and his physical ability and I know it takes a very patient person to hang around for that. When your child needs extra help to do simple tasks it makes you think twice about the simplest things. Friends have called me to take the kids to play dates. Usually they are so sweet and try to think of a place that will have something that James can do...in their eyes. I try to put on a smile and then head to google to look up the location to see if they have ramps, and activities that James can to. When we get there the other kids run off to do the age appropriate things and I will take James to something he can play on. I cant sit with the moms and chat, because I have to physically help James move and play. So we end up being isolated even at a play date and that makes everyone so uncomfortable.

When it comes to my schedule, no one ever gets that. They just can comprehend 3 physical therapy appointments every week, and then school, doctors appointments, orthopedic appointments, IEP meetings, and stretching that we do. I added up a typical week's appointments and school and it came to 46.5 hours a week! No wonder it is hard to find time for friends when a 4 year old is working a full time job! And those are the typical days, the months that we have surgery or intensive pt camp.....gosh I hardly get a shower much less conversation that doesn't involve talking about heel-cords or spastic nerves. When you have to check out of the everyday life for months at a time it is hard on relationships.  I know that I sound like I am complaining about my life and I guess to a degree I am complaining about this aspect. I truly don't mean to. God has blessed me with the ability to do all these things for James and if others cant understand why I do all of this for my son, I cant fault them for distancing

7 comments:

sandra

I sure understand because I had a daughter who became a diabetic at 10. She has been in and out of Dr's appointments hospital etc. all her life and at 45 this is still happening with her going to dialysis three times a week and once again as a mother I gave my life and friends to move to where she lives to look after my grandson who is five and blind. A disabled child takes up a lot of time and people just don't understand unless they are in that position. These children are so special and God has given them to us because he knows we can love them and look after all their needs. I am sometimes lonesome in a new town at my age where I have absolutely no friends but I wouldn't give up the time I spend with Jonah for anything in the world. I am told I could join groups and make friends but at 69 it takes all my energy to keep Jonah entertained so I just don't see anyway of doing it right now so I have found some really nice friends on the blogs one of them being your Mom. She is such a sweetie and I know that she is so proud of you and James.
So just know what you are a wonderful Mother and your turn will come. Blessings Sandra

Sarah

That must be so hard, but you are such a strong momma for making all those sacrifices for your son! I wonder if they have any sort of support groups in your area. I benefitted so much from our grief support group and I would imagine it would be so nice to be surrounded by women who totally "get" what a day in your shoes is like. Lots of love, Sarah

Gmama Jane

As a mama, it's hard to read this and not be able to "fix" it. You are so eloquent in your writing. I think you express yourself so well and THAT in and of itself is therapeutic. God is asking a LOT from you because He has entrusted James into your care. You wouldn't be able to live with the knowledge that you had not done Everything possible to make James successful. James is your purpose for now. Pray as Paul said." to be content in whatever circumstances I am in". You were raised to fulfill this high calling. I will begin to pray for God to send you the type of friend who will fit into God's plan for your life. You is Kind...You is Smart...You is Important!!
Love you,
Mama

Sweet Baby James

thank you so much for your kind words :-)

Sweet Baby James

Thank you Sarah. It is hard at time but getting it all out here on the blog is a real help for me.

Amy

I clicked over from Ellen's blog, and just had to say that I make the same comment to my husband when I come back from non-home playdates - "No I did not really have fun, because I can't just sit and chat with the moms because I have to help Julia play."

Julia cannot walk and only commando crawls, so at parks I have to go up and down the slides with her, I have to bounce with her at bounce houses, etc. And even if she is content to just sit with me, I am still usually stuck in one place because the other moms walk around and it's just not easy to keep moving when you're carrying a 27-lb toddler who's basically dead weight in your arms.

So thank you for making that comment! I am not the most social person in the world, and I was starting to think that maybe that comment was just a crock of poop on my part to try to justify my anti-social behavior.

Celeste Esposito

Hello! I've just stumbled onto your blog and am so glad that I did! I can't sleep tonight, my almost 6 yr old daughter is having SDR on Thursday...I'm a bundle of nerves and excitement! I've been reading through your posts. After reading this one, I just had to tell you how I know exactly what you mean about the friendships and those dreaded playdates that end up making me feel so isolated! It would just be so nice to have a close friend with a similar child..TO UNDERSTAND! Thank you for your blog!

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