Sunday, March 11, 2012

Survivor's guilt

I had a date to meet a friend at church yesterday for a big women's event we do every 2 -3 months or so.

By the way, it was fabulous and you should come if you need a touch from God.

trying to take self-portraits......
this was the best of the lot - my CREATE necklace. I love it!

A week or two back another friend (a BOY!) phoned me and wanted to know about church times and whatnot and I invited his wife (an ex-client) to join me.

I've invited them many times in the past and they never come so I thought it would be the same.

"Speak to J and let me know" I said and sure enough, the next day he phoned me back and said we're on!

I still didn't think they'd actually pitch but Friday night we were texting times to meet and so it really was on!


Anyway, they came and one friend sat on the left, the other friend sat on the right and the BOY left after praise and worship to go to one of our coffee shops.

I had to be straight with J afterwards that I really needed to talk to M (original friend) desperately as she is teetering on the edge.

They were totally cool and we will meet up again to talk properly but bottom line, she loved it, he loved it and looks like they want to come back.

Moving on.

M is the mother of the little girl who is just 6 hours older than Kendra and Connor. We met in the NICU as our 3 babies were put all in a row.

So here's the survivor guilt.

M is a single mother. The father kind-of disappeared for about 2.5 years after finding out about all their daughter's problems.

We were more on par in the beginning as we both had 32-week-old babies in the same hospital with the same paed so we were taking all these kids to a million appointments, or that's what it felt like anyway.

At about 6 months our appointments went to every 3 months, and then every 6 months and now we only have to see him once a year.

Our paed told M at the time that because of the brain injuries (her cord was twisted around her neck for too long, depriving her of oxygen to the brain), a lot of what would play out with her daughter (also M) would only become evident as she aged.

That was so true.

I remember all our kids being about 9 - 10 months. K & C were getting really curious and interested in everything and M would stare with a blank look on her face.

And it seemed that from then things just kept going the same way.

Baby M currently is on about 7 different DAILY meds (not vitamins, proper meds) to control seizures and a host of other things, and has between 6 and 8 appointments with various therapists (occupational, speech, physio) a month. She also sees our paediatric nutritionist and paed, and a neurologist. That's why it's between 6 and 8, depending on how the months work and who is due to see her.

She doesn't crawl, walk or talk. She also has to have some botox things done in her arms and legs every 3 months to help control seizures, amongst other things. This gets done under anaesthetic and M tells me when the three months approach, she can see it in Baby M because she starts to not sleep for about 2 - 3 weeks leading up to it and has to be carried the entire day.

She has a nanny living in who she pays a fortune for (understandably) and between the two of them and occasional babysitting from her two sisters who live in Jhb, they have to care for baby M.

Oh, my heart breaks.

Both for the baby, but also for my friend.

I told her yesterday (very honestly) that I don't feel like I'm being a very good friend. I'm REALLY trying (to check on her regularly via sms, phone and email) but I just can't understand everything in its entirety.

Of course she said nice things and that besides her two sisters, I'm the only one who gets it.

I know how knackered D and I are running around after two healthy toddlers that can tell us exactly what is wrong and where.

And here she is, alone and having to do about 20 times more than we have to do, and feeling unable to help M in the best way.

She tried to put M in a school for special needs kids and had to take her out because she was getting so sick - about 3 times within about 7 weeks. And with baby M, you can't just put her on any antibiotics, etc. - she has to get every script looked at by the neurologist to make sure nothing will interfere with all the other meds.

So all of this has been clouding my mind, despite the really good time I had just being out with M.

Today D and I were resting in the afternoon and I suddenly said, "survivor's guilt. That's what I have with M".

She gave me some gifts for the kids and I only gave it to them this afternoon after I cleaned up the royal mess of a study.

Our rule is we phone immediately to say thank you for random gifts so I grabbed the phone, dialled her number and the kids had a fat old chat with her, thanking them for the gifts and saying hello to baby M too.

She said to me afterwards, "I can't believe how much they talk" and I'm sure it must be especially jarring because they were ALL 3 in that NICU.

Her situation could so easily have been mine.

Yesterday I asked her if she's seeing someone (a therapist) and she said she would dearly love to but there's just no time. Unless it's between 8 and 9 at night at her house :)

This is one instance where my normal rules of you make time for what you value doesn't apply. I get it. (A reader of this blog, A, is in the same situation with her special needs kid)

She is literally rushing to work the minute the nanny steps in, works from 7:30 - 4 when there are no appointments, rushes home and she's "on" until they fall asleep, only to repeat it the next day and the next.

Anyway, I will continue to pray for her and be there in my limited capacity.

And I will totally appreciate the lot in life I've been given.

do you have any idea how hard it is to take a pic with your left hand?! this is my pearl ring
How was your Sunday?

What are you looking forward to this week?

PS I have a hair appointment on Tuesday so I've taken a half day. And now I have some DVD/ crafting time. Look out tomorrow to see what I made last week - SO cute but SOOO easy.


  1. Oh my heart breaks for your friend! :-(

    I get it! Well to some extend. It is and was different for us, but I do get it. I get the busy schedule. I get the juggling different medicines. I get the quite possible loneliness she must be feeling. I get your survivor's guilt.

    I can tell you that you making contact and keeping contact is quite possibly one of the things she needs the most right now.

    This coming week I'm looking forward to my next triathlon :-)

  2. My Sunday was horribly unproductive. The house is "run" so much differently when mommy is not home so I had to whip things into shape when I got home. Late nap is going to make for a late night, but hopefully I'll find some energy to paint!

    This week I'm looking forward to building something, anything!

  3. I'm so sorry for your friend. It sounds like she definitely has a full plate. I'm sure she appreciates your friendship so much more than you realize.

  4. adesolaf7:22 am

    I'm so sorry to read about your friend. Will be praying for her and her little girl!

    Love the necklace and the pearl ring, very beautiful.

    Looks like I missed WoW (attended every single one last year) kept wondering when it would be and it's kind of weird I didn't get the usual SMS reminder.

    Looking forward to waking up late (no 5.30am boot camp ) Yipppppeeeee

    Have a great week

  5. Just keep reaching out to her...I think your friendship means more to her than you realize.

    It's my mom's birthday on Sunday so this week I have to hussle to finish her gift!

  6. Oh my heart breaks for her. I think I may have a tiny bit of understanding of her situation. Domyou know btoh A and L had cords around the necks and that L had a true knot! We were so lucky or rather blessed.

  7. You know, I can’t relate to your survivors guilt but I can relate to your friend and the overwhelm that she must feel. I can tell you that she does appreciate you being there. And I would urge you to continue to encourage her and just listen. Take her out for a lunch-time coffee now and again. Speak to her in her love language - I think that she will appreciate that even more.

    Tomorrow we are seeing the neuro dr for Joel's appointment so that's really the only thing on my mind right now. I suspect I will be able to think about the rest of the week once that's out of the way.

  8. I get the guilt. A close friend of mine was expecting the same time as my youngest. I'll email you, as I don't want to go into details here.

    The fact that you are sensitive to her needs, and appreciate what she is going through, I am sure she appreciates.

    It's tough, but you are being a great friend.

  9. I feel so sorry for your friend, but I am sure that you will reach out and love her.

    I totally love your necklace. "Create in me a clean heart" is a cry from my heart too.

  10. The best you can be do is be there for her- be open and honest and just say that you don't know what to say! I'm sure she appreciates the effort you make :)


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