Monday, August 4, 2008

How many times will my heart break?

A friend came over last night to bring us dinner. It was a very kind and generous gesture, for which I am grateful. I've been feeling distant from this friend, however, because I don't think she really understands where I'm at with this whole thing. It's her nature to be cheerful, and I feel like she just wants to cheer me up, and I neither want nor need cheering up right now. I need space. I need empathy and compassion. I don't want to be encouraged to see the bright side of this whole thing. I need to be allowed to grieve, to get through this emotional roller coaster so that I can, hopefully, one day, come out the other side, a better, stronger person.

Along with dinner, she brought me a copy of the book, Babies With Down Syndrome. When I saw it, my stomach turned over. It was evidence to me that she has not read this blog, which hurts because I created it specifically to keep everyone who is interested updated on Finn . . . and it has become a way for me to express my feelings and hopefully give the people in my life a better understanding of what my family and I are going through.

As I posted here a while back, when Finn was still in the hospital, I had gotten that book, Babies With Down Syndrome, and it through me into somewhat of a tailspin. That is the book that informed me that my son is, and always will be, mentally retarded. That is the book that informed me that my son is sterile. That is the book that informed me that he is prone to a plethora of medical issues over his lifetime - which, by the way, is expected to be shorter than a normal, average person. After a couple chapters, I had to put the book away. It did not offer me hope. It felt like a sentencing.

So when my friend brought me yet another copy of this book last night, I felt a rising panic. I told her that I already have the book, but she left it here anyway, so I decided that this morning I would make it one of my errands to take it to Barnes & Noble and see if I could return it for a store credit or something. As I waited in line at the checkout counter, I found myself holding the book with the title facing in so nobody could see it, and I found myself holding Finn in his carrier the same way - facing in towards me so that nobody could look at him. I find myself going back and forth between wanting people to know about him up front, so that there is no wondering, and not wanting anyone to know, so that there is no judgment or pity.

They wouldn't take it back without a reciept. I understood. I didn't want this book, though, that feels like poison. It felt like some sort of message: "You're stuck with this book, just like you're stuck with this baby." On my way out of the store, I dumped it into the garbage can. I got into my truck and cried . . . and I've been crying ever since.

I feel defeated. The fact of the matter is that Finn is never going to outgrow Down syndrome. He will never be cured of it. It is something he and our family have to live with forevermore.

I'm sure that in my present sleep deprived state, my emotions are running even higher than usual, and maybe that's as good an explanation as anything for why I'm feeling so low today. I want to sleep. And I want to wake up from this bad dream. I want to wake up and find myself pushing out a healthy baby, a baby with fat rolls on his arms and legs, a baby who doesn't fill me with worry and fear and sorrow.

When will this all stop hurting so much?


Anonymous said...

Gosh Lisa, I just want to give you the biggest HUG right now. I can't offer any "words" because somehow that just doesn't seem adequate.

I think about you and your family often. Just wanted you to know.

~Andrea (ahanson74)

Cindy said...

Oh man Lisa! How frustrating and upsetting. Hang in there - people will be people and it is ok to be pissed or angry. Many people in your shoes would feel the same. I am proud of you for throwing the book away! That in itself must have felt like a relief. HUGS!

Karly said...

Hate that book with a passion. No one can say when, but I can promise it does stop hurting so much. (((hugs)))

Larry said...

Lisa - it is OK to have all the feelings you are having at any particular time and for as long as you feel them - grief is a very personal thing and everyone feels it their own way and works through it their own way and on their own timetable. There is no "right" way for you to feel about your situation...I hope the rest of your day is better and you have a smooth night...Lisa B

Laurie said...

I understand, Lisa. I really do. Im thinking of you and sending lots of hugs your way.


Laura said...

Played a little bit of catch up... I gots to say what a beauty Finn is... And to be rolling over!!! Yeah Finn...

I think it's great that you are taking it one day at a time and that there are some normal days in there!!! Here's to many more normal days...

Hugs from Canada!!!

Christie said...


I told you I follow your blog and after ever post I want to comment, but finally got the courage to now. Nothing I can say will take away your grief. Just know that I am hear to listen. Life can shit on us and I have had my share of loss including the death of my first love due to an overdose as well. Only in hindsight can I see the positive of all the sorrow endured and if given the opportunity now I wouldn't change the outcome. Anyways, please know you and your family are thought of often and that I am here to listen. I don't pretend to know what your are going through exactly, but again, I will listen. Here is a poem that you may be able to relate to right now.

Please Be Gentle
By Jill B. Englar

Please be gentle with me for I am grieving.
The sea I swim in is a lonely one
and the shore seems miles away.
Waves of despair numb my soul
as I struggle through each day.
My heart is heavy with sorrow.
I want to shout and scream
and repeatedly ask 'why?'
At times, my grief overwhelms me
and I weep bitterly,
so great is my loss.
Please don’t turn away
or tell me to move on with my life.
I must embrace my pain
before I can begin to heal.
Companion me through tears
and sit with me in loving silence.
Honor where I am in my journey,
not where you think I should be.
Listen patiently to my story,
I may need to tell it over and over again.
It’s how I begin to grasp the enormity of my loss.
Nurture me through the weeks and months ahead.
Forgive me when I seem distant and inconsolable.
A small flame still burns within my heart,
and shared memories may trigger
both laughter and tears.
I need your support and understanding.
There is no right or wrong way to grieve.
I must find my own path.
Please, will you walk beside me?

Carla said...

Oh, Lisa, I at last return from my lightning induced internet hiatus and return to find this heart-wrenching post on Finn's blog. Where you're at is exactly where you need to be and don't let anyone pressure you to be elsewhere. The way your friend is acting is a reflection of how she is dealing with your situation and she has no right to put that upon you, nor do you have any obligation (as you know) to take it upon yourself. I hope you don't feel as though I have abandoned you over the last few days and I look forward to sending you a proper private email tomorrow. In the meantime, many hugs and lots of love.

Anonymous said...

I'm not sure what to say, but I wanted to say something. I can't pretend to know exactly what you're going through. I don't.

This blog is titled Finnian's Journey.But it's your journey just as much if not more than Finn's. It's your entire family's journey. It's an unexpected journey, a huge curve on the path you thought you'd be on.

I looked up the exact definition of the word journey. What I found was this.
To undertake a journey or trip;
the act of traveling from one place to another.

Those definitions sound to me like each entry your write. You're traveling from one place to another, you're undertaking a journey. It's wasn't planned, it's took you by surprise, was completely unexpected, and most of all, the destination is unknown.

Just like life, none of us can predict the future. We can research to death, over plan, and hope for the best, and although that might help us feel better and sometimes guide us, none of us know what the future holds or what can happen from one day to the next. No one escapes this reality.

I think in time, that you will discover things about you, your kids, and Michael, that might surprise and amaze you BECAUSE Finn is different.

I'm just an observer who happens to be a family member. I'm not here to judge or cheer you. The only thing I offer is my consistent support, even if I can't always be there. No matter what, I am here for you, Michael, and my six nieces and nephews. Finn is one of those six. I love them all equally.

Okay, Finn cried last night. Alot. Didn't they all? Finn will be who he is just like the rest of the kids. He will have his own identity, no matter what that may be, it will be all his own. It might not be what you thought it would be, but he will develop in his own way, it's inevitable. And as far as who's going to look after him, hey, the kid has five big brothers and sisters and that's amazing.

Janet said...

Hi Lisa,
I am not sure what to say except that I read your blog every day and although I have not experienced what you are going through, I understand. I think would feel the same. I am so glad you threw that awful book out, I wish the store gave you a credit or something.
You are in my thoughts-hugs to you.
Jan from the lge family board

penny said...


You really are not alone, many of us have already walked the path you are now following. Finn is a gorgeous little chap and one day you'll know how lucky you are to have him, it just takes time.

And please don't make assumptions about his future and what he will not achieve. He has a learning disability but he CAN learn, just look at the likes of Karen Gaffney, Chris Burke and Suj Desai (to name but a few) and what they have achieved (check out their websites when you are ready).

I am honoured to say that I have met all three and am truly inspired by their determination to succeed. Karen has to be one of the most inspirational and accomplished speakers I have ever heard and I am proud to call her friend.

Be kind to yourself and try not to worry about the future, these things tend to have a way of working out and in time I'm sure you'll see things aren't as bad as they seem now. Grief is a very difficult and personal journey, but thankfully you only have to cross that pathway of loss and not travel down it, which I can assure you is an even harder journey.

Anonymous said...

Just sending some love from the UK because it sounds like you could use some right now and it's all I can do!

There is no right or wrong way to grieve. You have to go with whatever you happen to feeling at whatever particular time. These are still very raw emotions for you. It's not quite been a month yet after all - even though it probably feels like the longest month ever in some way. You're still a getting only handle on what exactly you're dealing with.

It will take as long as it needs, but you'll get there - because you have to. (I'm speaking as an only child who lost her dad at age 5 and at age 18. I know it's a completely different sort of grief, but you know...)


heather said...

I just want you to know that you are not alone. My daughter is now 5 years old but I remember feeling exactly like you are during those first few months. It does get better! I promise! :) One day you'll look back on these days and be sooooo glad that they are behind you but also wonder what it was that you were so worried about. Finn is more like you other children than he is different. And I promise that he is going to be a bright child! He has a loving home and siblings which will make all the difference in his life. God bless you and your family!

Julia said...

OK...I know how you feel for the most part. I mean different things will hit people different ways ("the book" actually gave me comfort though I understand exactly what you are talking about!!!)
Just be assured this all will pass - and pretty quickly I bet.
I was hit sooo hard when my son (now 2 yrs) was born. I just wanted to escape. I even thought about suffocation in a quick, freak out, what are my escape options kind of way.
Now (I don't know how long it took but it didn't take very long to get to "Now".) the only thing I would change about my son would be that moment of his birth that I felt such sadness and loss. Yes it was a loss but I had no idea of what I had gained!!!
The biggest gain is what he has given to each of his siblings! Now I am excited to see how it all turns out. Now I even love Ds. No one is more surprised by that than me.
Blessing to you and yours!