Tuesday, September 4, 2007

That's what friends are for?

A wonderful part of this painful journey has been the creation of new friends like Yuka whom I met via Erica speaking to Simon at the UK CHARGE Foundation in the very earliest days when I was unable to digest too much more about CHARGE, lest still, to actively seek out parents in the same position. The irony of this is the experience at the CHARGE conference, in a room of 600 other parents, much like ourselves, who've shared such a catastrophic event. Yuka and her husband Scottie vowed to spend their Wednesday date nights with us in the NICU. It was such a tremendous offer of support from someone I'd only just met. Other friends, like Cassandra and Vivian have been forged by a shared experience of boarding for months in either the neonatal or paediatric intensive care units of Children's. And then there are fellow CHARGE parents, and the CHARGE kids themselves. Friends from ivillage Fertility Issues. Dear friends back home or in Australia who have helped me through the darkest and shared the brightest of days. You've commented on my blog, you phone me, I know you would visit us in hospital if you were closer. My family are my great foundation and I love them so dearly. It's quite unbearably lonely when they leave.

And then there are the nurses, respiratory therapists and Drs who have cared for us almost as much as they care for Reuben. They sit and listen to us and allow us to express how we're feeling. There's empathy, laughing. It's become like a second home. They go over and above.

And yesterday, during one of those chats with the nurses, whilst I sat feeling pretty sad and alone that Anne-Marie and Aurora had left after a mammoth period of support from family, the nurses noted how monumentally absent from the bedside my friends have been and it's a striking recognition that, whilst support floods in from the around the World, my friendships forged here in LA have dissolved to nothingness.

So a part of this painful journey is the realisation that people you previously shared time with are just not there when you need them more than ever. It would have meant the World to offer active help, to offer to sit with me for an hour, to bring over something to eat. It just doesn't seem that much to ask for, a little compassion, empathy and active help. I guess I just can't get my head around that. Most of the friends in LA haven't actually met Reuben.

I was given an opinion quite early one when this issue first started to bother me. When you're dealing with grief, people either don't know what to say, and chose to look the other way, or they acknowledge the issues, but are very glad it's not happening or could possible happen, in their World, particularly when they are pregnant or new mums themselves. Thus the feelings of isolation you get from experiencing a newborn with such medical complexities are only compounded. Everyone wants to visit a newborn, you're bombarded with visitors so much so that you have to limit them. That's what I was lead to believe. Except, that doesn't quite apply if your baby isn't healthy. You don't hear the initial CONGRATULATIONS, you get instead, the SORRY.

Never has the adage A Friend In Need seemed so poignant.

There isn't a need to comment on this post, it's just, for once, a clear expression from me that I have no space in my life for fair weather friends. I can now finally put this matter to rest. It's been a cathartic experience and that is the purpose of the blog after all.


yp said...

It was a sad and healing moment when I let go of my "shoulds" - and accepted what is important to me without apology and equally accepted what others were without expectation. My baby with CHARGE is 17 years old and at University now, and I have time to be present my friends who could never cross the unknown into our world, however, for many years priorities made it that I did not. I did not apologize for my choice, not did I begrudge them their complaints or criticisms. The phrase "they do not understand" went from being a plea to a healing statement. Simply - they do not know better - surely if they did, they would behave so differently. The sadness in knowing what is was much better for me than the sadness of looking for what wasn't. Giant sloppy American hugs to you on your tremendous let down - such a missed opportunity for them. love, y

Kristi said...

Oh Catherine... I just texted you... and then came on here to check on the three of you.
As I have said to you before, I am so sorry that what we share is the circumstance of CHARGE - - that is to say the tragic, frightening parts of CHARGE Syndrome... yet I am also so grateful for the bond it creates. The quiet understanding that only those "in the know" can share. I have been where you are... and to be quite frank, I am no where near where Yuka is (when I grow up I aspire to have just a fraction of her wisdom - - but that's another post!).
Somewhere in the middle is where I sit... some days I am so keenly aware of the lack of normalcy in our lives that I feel like I can't function. Most of the time, though, it doesn't cross my mind. And when I say "lack of normalcy," I don't mean Gracie - - I mean the circumstances that have been created since her birth. It's a mourning process, I think. One that I still am trying to heal through... one that evolves as Gracie grows and new things come up that slap us in the face with the realization that our lives are very different from so many others.
We all handle things differently - - for me, when the "bad days" come, I welcome them. I have come to realize that I am far healthier if I let myself get sad or angry - - only then can I really let it go and plow forward.
What I can tell you with certainty is this... the children that we have brought into this world are miraculous. They will teach those who let them into their lives more than we'll ever be able to fathom. Those who fail to visit, those who fail to call, those who look away - - they are the ones who are missing out.
I am so sorry that today hit you so hard. I am glad that you posted and let it out (hit the day back, so to speak!) It's important, I think, to acknowledge how we are feeling in order to move forward. Although I wish today would be the last day you feel like this, I'm certain it won't be... For those days - - and all days - - I hope you know that your new friends are here for you. I am here for you.
With love,

mighty max and mommy amy said...

Oh my friend...your words speak clearly how many of us feel during this journey. It is truly amazing the friends who will come into your life and the friends who will leave. It still breaks my heart (I echo Kristi's comments about not being quite where Yuka is on the healing process! Not sure if I ever will be!) Strangers have often been kinder and more encouraging than friends of 10 years or immediate family members. It's shocking at times, and each day I am hoping I am stronger and learn to deal.

It is an honor to be one of your "new" friends and I would love to meet Reuben someday...it would be indeed a wonderful, amazing honor.

Until then...much love and prayers from me and Mighty Max!


vickyann31 said...

Hi Catherine,
I am really saddened by your post about your LA friends. It must be incredibly difficult for you that they are not extending the hand of friendship at a time when you, Jack and Jason need them most. They don't know what they are missing out on as you are one of the kindest and most thoughtful people I have encountered on my own journey to motherhood.
'Friends are the family we choose' someone once said and I guess that now your ivillage friends, your charge friends and your friends around the world are adding to your ever loving family.
Best wishes to you all,

mog-aj said...

Catherine, Jason and Reuben.

We wish we could be there for you more and would visit if we could.

We do understand how it is as after Alfies stay in hospital we found out who our real friends were you being amoung the most supportive even with your own issues and being so far away.

Love and hugs to you all.

S,S and A x

Jacob's mum said...

Dear Catherine,

You write so wonderfully on this subject I wish my fair weather friends could accidently stumble across your site!

Our experience with friends has been identical to yours...those who I counted as my dearest friends before Jacob's birth (with 1 or 2 notable exceptions) have not been very interested in him at all. We had no visits other than family in our 7 weeks in NICU...
At times I have thought maybe I am being over sensitive and perhaps it is more that they are not interested in babies/kids full stop...but as the apathy has continued I have begun to accept that him having Charge has left them feeling like they don't know what to say or do so they avoid it completely.
I am still sad about this and no where near having accepted it with the grace Yuka demonstrates - I hope by the time Jacob is 17 I will be some way down that path...!!! But I feel I have moved toward accepting these disappointments a little more recently. You just have to let it go.
Like you, those I count as real friends now (the ones I really talk to) are mainly a mixture of family and new friends like the nurses who still visit Jacob, the other Mum's at our local special needs social group, other parents of Charge children etc... and the one or two people who were already in my life who rose to the occassion splendidly (and they were not the ones I expected to be able to lean on!)...
But I am glad I have met all these new friends and my life is so much richer now - all thanks to my darling wonderful amazing little lad!


ellen charge said...

you say no need coment well u no people will coment and im sending hugs and i love ur writing jsut love it

Eva Nichole said...

I have tears in my eyes knowing just how you feel!! Your words are always so clear and I can see the pain you feel in your heart as you go through all of this.
My best friend at the time of Eva's open heart surgery thought telling me about her dad having some minor thing was going to make it all better, and she never came up to see Eva except once when I had to leave my daughter to go pick her up and finally I turned and thought WHY AM I WORKING SO HARD TO GET PEOPLE HERE, if they wanted to be here they would be. I have lost many friendships since I had Eva but gained so many more wonderful ones. Yeah they are mostly my CHARGE family and they are spread everywhere but I know if I send them an email or post on the group they will be there for me. You are doing a great thing and being a great mom and I know times like this we want to run up to the rooftops and scream!!!
If I could afford a ticket back out to California I would be there in a heartbeat!!
Hugs and God bless,
Crystal and Eva (2 year old CHARGEr)

xXx ~ Jac ~ xXx said...

Hey Catherine,

I'm still here honey. Haven't commented in a while, but I read your blog regularly and pray for you J and R always. I always told you on the few occassions we communicated on ivillage and on email that you are an inspiration to me, and you really are. Recently had my myomectomy which went very well, and you were a big part in me going for it. I can only *see* your love for Reuben to know that even though he's ill and is having to literally fight for breath and life, having him and loving him and supporting him the best you can is something you are doing with admiration, and you're loving him with all your being. So many times I've read an entry and LONGED to be there, give you a hug. I've dreamt of visiting LA, dropping you a line and asking you if we could meet up for a hug - if that was okay with you. Many times I've wanted to make a comment, but felt so inadequate in what I'd have said. This post however, reminds me that it's not about knowing what to say, but about you knowing I'm here for you - virtual as that may be. And I'll comment honey, let you know that I'm here, and send you some virtual hugs. Wish I could cook you a home made meal too. Keep strong, look after yourself, and stay blessed, all of you.

love and ((((((((((HUGS))))))))))

Jac X O X O X O

Polly said...


The purpose of your blog may, in part, be catharsis for you... but I can assure you that for a lot of us that read it, it is inspirational, humbling and addictive! I am shocked and saddened that your LA friends have so deserted you... even if there may have been an initial awkwardness in visiting Reuben/knowing what to say (which I can, to an extent, understand... although I'm sure that would have quickly passed once they'd been the first time), I'm amazed that you haven't at least had offers of help at home etc. I can well understand how let down you must feel. BUT, clearly from what you have said and by reading the comments on this blog, you have gained some truly amazing new friends... albeit geographically scattered! Polly xx

Anonymous said...

Congratulations on your beautiful baby boy. I have been able to follow the ups and downs of his short life via your LA friends. It is a joy to see the wonderful pictures that you share. Although it may be hard to see right now, I really hope that the friendships you have cultivated here in the states prove to take a positive turn. As you have well learned, people respond in many ways when they don't know what to say, how to act, or what to do. Everything seems inadequate. Please know that rejoicing does take place and sometimes, tears are shed. But thoughts and prayers are being shared all around the world because of one little boy. For many of us CHARGE was never heard of. Now, there are people sharing information continuously. What a miracle - what a gift. I will continue to read your blog and hope that someday I might meet Reuben - perhaps playing in the yard with my own grandson!

UndercoverPete said...

Sometimes we have to accept changes in our life, changes in our circumstances, changes in our availability and changes in our responsibility. Rarely will friends follow the paths that lead them out of their own world or into the worlds of others and ultimately this is something we have to learn to accept. Its reflected in so many situations, the footballer who changes team, the work colleagues who move on, our school friends etc. It's part of life's changing scenery and whilst we might pick up on these losses we have to accept our friends will never have the same commitment as ourselves.
I remember Dad telling of a situation where a mother died and whilst the father strived to continue with his old friends he soon found they were finding it hard to invite him out when everyone was attending as a couple. The awkwardness was interpreted as rejection and he finally returned to Australia to seek a new life.
Society is like that, people are ostracised for little more than a lack of understanding and if we look back we may find we too have been part of the same process.
However, what has become very apparent is you now have a new group of friends, a new source of information, support and encouragement. People who have come together because of Charge, people who are experiencing/ed the same as yourself and each helping to support each other with their advice, the common obstacles and their love. Most importantly, these new friends are not here merely for today, or even for tomorrow, they are here for life - the life of their children and the life of Reuben.
Lets celebrate that.

Catherine said...

From Jojo (ivillage)
Hi Catherine
I vist Reuben's site everyday to check how you all are getting on and I have to say what an inspiration you are.
I was sad to read your recent post re friends, I would just look upon it as there loss - they are losing out on meeting a wonderful, adorable little man who has a great fighting spirit and a friendship with his parents who are strong and there for him every moment of his life and who in spite of everything take the time to consider others - showing what truely remarkable people they are with more strength and character than any of us!
I'll keep checking in on your blog - keep the photos coming he's adorable!
Wishing you all well now and always
Lots of love
Joanne and James
6 weeks x

Catherine said...

From Sarah (Evan's mum)
Hi Catherine,
I read your post today (and have been faithfully following Reuben's story--I'm so glad he's doing well and his heart surgery was a success!).

I have watched several friendships cool off after Evan was born. Some people, for whatever reason, either can't or won't make the effort to get past the awkwardness that happens when you have a child that is "less than genetically perfect" (I insert the "genetically" because you know as well as I that our little angles couldn't be any more whole or perfect in our eyes). I don't know if it is because they are scared or because they are feeling a sort of survivor's guilt because their child is medically unremarkable or if, like you said, seeing your child is just a little bit too much reality for them--to know that even in this day and age there are some things medicine can't keep from happening and sometimes babies don't make it.

If I can offer you any bit of comfort, know that I have met people and forged friendships that I would have never made had we not had Evan. These friendships are much stronger than the ones that fell by the wayside. I don't have a crystal ball or anything, but I can't help but think that if Evan was enough to weaken a friendship then it wasn't very strong to begin with...and something else would have come along to cool it off.

You are right that you don't need any fair-weather friends. The people who surround you now though are anything but--I have read their comments on Reuben's blog, and they are full of love and support. You have every right to be angry that some of the people you would have expected to stand by you have not, but I hope that you find comfort in all the others that have stepped up to take their place.


Catherine said...

From IVFGAL (ivillage) Becky

I hope you get this message I really do.
I wanted to tell you that I check in on you and Reuben and Jason EVERYDAY, I am disappointed and worried about you all when there is no update. I say a little pray in my head and hope that each update is a positive one for you all. I feel joy at the milestones and upset when you have set backs.

I was so upset to read your recent message that was Friend related and wanted to post here to you.

Your previous post the other day UK V LA I was desperate to post (tried and failed to register so I could leave a comment) to say that I thought that you and Jason should keep Reuben in LA because I dont have much faith in the majority of UK doctors (talking NHS here) but having read you last post I want you to fly home right away (if it were only possible with the issues you not only face daily but second by second with your beautiful little boy and his medical condition)

Let me say that should you decide to come home I for one would do anything I could to help and wanted you to know that! You have been such an amazing support to me and many others here over the years and I can only guess that you are as kind and considerate in real life.... if your so called friends can't see that and return some of the friendhsip you have extended to them then bugger them! I am so angry for you.

Your Boy is adorable and I cant say this word enough 'CONGRATULATIONS, CONGRATULATIONS, CONGRATULATIONS' and I am not sorry and neither should anyone else be! I am not sorry because you have your little boy, you have him to hold and he is a fighter, why should anyone be sorry about little boy who is beautiful and the stongest little man I ever heard of? and with the friends that matter you will get through and your little Reuben will grow up to be an amazing person just like his Mummy! There are no sorry's here... only congrats and lots of well dones for getting through times when the stongest of people would faulter. I am proud to know you!

Come home Catherine, please dont go through this alone.

Lots and lots and lots of love
Reuben's No 1 Fan