Thursday, September 17, 2009

When reality hits you in the face.


One of my callings in life is that of "grief counselor". Ever since the loss of my precious and beautiful son, Gaven (pictured here), in 2002, I've gravitated towards others who live with grief. In the time following this loss, I joined and then began facilitating an infant-loss support group.

Then, in February 2007, the same day that I had by first OB appointment for my pregnancy with Lauren, I began a course of study that would lead me to a masters degree in counseling.

In the past few months, the grief agency for whom I was leading the infant-loss group,Gabby's Ladder, wanted to employ me as one of their professional grief counselors. I was both thrilled and nervous to take on such an endeavor.

Today brought me face to face with a dilemma that I could not have predicted or asked for. I was asked to call a mom who had lost a baby last month. We made an appointment for today.

After she filled out her initial intake I asked her to tell me about her baby and her loss. It is then that she told me that she had terminated her pregnancy because an AFP revealed that her baby might have Down syndrome.

It took me a moment to process this information. Did she really just say that after she found out she was pregnant with someone like Lauren she decided it wasn't worth it? It's hard not to take this personally, though I know that it wasn't and that as a professional, I need to stay on task; she is a grieving Mom who came to me for support.

As our hour and a half session progressed we explored her feelings and how she has dealt with this very difficult decision. I understand that this was hard for her. She delivered a tiny 20-week gestation baby and held her lifeless body for 7 hours. She has pictures, foot & hand prints, clothes and other mementos of her pregnancy and her preparation for this baby. But, she does not have her daughter.

I am not angry at her but I am angry at a World that diminishes a precious human life because it is not the thing that was expected. And, I'm angry that doctors still don't know how to tell an expectant Mom and Dad that having a baby with Ds is going to be a good thing. I'm also angry that this woman was tested for "abnormalities" like Ds and that in the name of making an "informed choice" she/we/everyone has to decide who is worth having and who is not.

What makes this issue even more compelling is the debate as to whether or not children with Ds are in fact a blessing or a "burden". An OB, who shall remain unnamed because I think she's stirred up enough bad will for herself to last a lifetime, posted something recently that due to the 'advances' in prenatal testing, there is the possibility of Ds being eliminated, or at least reduced. Alot of people think that would be okay.

Alot of the moms on my Ds board went toe to toe with this woman and asked her to justify her stance and her attitude that doctors don't need to tell expectant parents that having a baby with Ds can be a blessing. Instead, she believes it is only necessary to tell them what a struggle it will be.

When parents wrote in to tell her that "hey, we're doing this and it's great so please tell parents both sides of the story" she argued that we can only speak for ourselves and that we were biased and were basically fooling ourselves.

Am I fooling myself that continuing my pregnancy with Lauren was the best choice for her and my family?
Do I ever wonder what my life would have been like, never knowing Lauren?
Have we really been rewarded for choosing Lauren?
Was this a pro-life issue or was this just a matter of avoiding guilt and heartache?
Is the absence of guilt and heartache associated with a termination balanced by a feeling of peace and happiness?

All I can say is this: Lauren has blessed us in a way that I cannot really explain. She has brought new and wonderful people into our lives, she has forced me to reexamine my values and opinions, she has shown me how a simple gesture such as a smile or kiss can transform my mood and give me hope. She has a 'can do' attitude that I wish my other children would adopt and a determination that makes me want to fight so hard for her happiness.

Yes, Lauren is different than most children but that is such a good thing. I thank her for the joy she has brought to my other children and don't want to imagine their lives without her in it. They get such pleasure from being around her.

I realize that not everyone will get it: not everyone is cut out to say "yes" to a baby with Down syndrome. But, we did and I am oh, so happy about it.


21 comments:

The Lehnick Family said...

This is a tough one for me as well...because we did find out while we were pregnant and at that time you do feel like "You are the only ones going through this...", but we were fortunate to have such support on our side for our decision that this was in God's hands, not ours...my beliefs had been embedded in my and my husband and I am so glad I was NOT alone at this time...we were also fortunate to have a great team of doctors who were supportive in our decision in NOT terminating...but that certainly is NOT always the case...I so wish the awareness could start with all the OB's...when we met with the genetic counselor, all they can give you are medical facts of DS and that can be ever so scary...How I feel for this woman...you have been called to your profession for a reason and you will be able to guide this person...I will say a prayer for her and you...hard not to feel a lot of emotion with this I am sure...

one_plustwins said...

Oh, my..........to terminate on the possibility of a highly false positive test? I cannot imagine. I can do nothing more than pray. That is all I can do.

Cathy said...

Oh wow, wow, wow! I'm sure you handled it professionally. I would have had a hard time with that one!

Sasha said...

Wow...How hard that must have been in your shoes sitting there listening to her. Especially when you first found out. I think it is a hard job that you are doing and that just made it harder.

Yo Mamma Mamma! said...

You are a far better woman than I am...she really terminated after the AFP and only that??

How can she ever get past that? Did the baby have DS?

April said...

Lauren is lucky to have a mommy like you, I know she was hand picked for your family. I'm really proud of what yu've done with your life and with your grief. I wish I would be able to take mine and turn it into something positive that helped others, like you. I can only imgaine how conflicting it must have been for you to listen to this woman talk and try to remain objective.

Karen said...

God Bless you Signe, for doing what you had to do for this woman and remaining professional. A tough position-I cannot imagine, but hope I'd be as professional.
Christie's blog was similar-about a child who was considered different and the choices made. My statement was and remains that it is not my position to tell my Creator that His creation is not worthy of life. However short, however different.
The children I have come to meet as a result of Caleb-both online and IRL-have changed me in ways I could never have imagined. Thank God for such changes.
Thanks for sharing Signe

one_plustwins said...

great finish, Signe.........

allot of veg said...

Hi Signe
I'm sure you make a great counsellor. You certainly helped me when Edward died. I'm grateful to you and people like you for helping me through. As to this lady with a subsequent pregnancy I had a test that told me I had a one in eight chance of a child with DS and was asked to make descisons based on the test which was fairly easy for me but less so for my OH who needed time to get used to the possibility. So I kind of get where your lady is coming from - there is a heck of a lot of pressure there when you are feeling vunerable and don't know where to look for support, certainly on this side of the pond. Hats off to you for taking it all in your stride.
Best Wishes
J

dianne said...

Signe, you definitely have found your professional calling. Your compassion and empathy ratio is off the charts. The day you stood in front of grieving family and friends to euologize your precious Gavin was one of the most memorable days of my life. I came with such a broken heart for you and Chas and was so inspired by the depth of your faith and love. I felt that day that you were a discipline of God's love bringing solace to all who were devastated by Gavin's sudden death and at the same time as his mother, you were experiencing heart-wrenching grief. You will be a blessing to so many who need those special words of encouragement.

Just Deb... said...

Wow, Signe. This is amazing. Was this the first assignment of your new position? What are the odds? I can only imagine how difficult it must have been for you to bite your tongue while helping this woman to grieve her "loss". This is probably not the popular opinion, but, maybe it is better that a child is NOT brought into a home where he would not have been loved and accepted for the gift that he would have been. However, it makes one wonder, what child would be "perfect enough" to be a part of such a family?

I'll be following your blog now. Our situations are different, but so many of your observations hit home with me. You are awesome!!

Anonymous said...

Signe-
Aren't you being a hypocrit in this blog? YOU did NOT want to keep Lauren when you foun dout she had Down's. YOU were going to get rid of her by giving her away. It is not right for you to act like you do not understand why this mom did what she did when she found out her baby could have Down's.

Signe said...

dear "anonymous" (gosh i wonder who you are since my map tracks my visitors)..i don't pretend to be perfect or infallible. I Had a very hard time with the prospect of raising Lauren. But, I chose her and I have never looked back. If you have a problem with me or my choice, so be it...I have nothing to prove to you. You have certainly not led a life free of hypocrisy. Welcome to the real world.

one_plustwins said...

Wow, anonymous...........you got some moxy for begin so hidden. Adoption still brings forth a life, abortion kills that life. NOTHING of the two are the same. Hypocrite? You might want to check your Webster's Dictionary to learn the meaning of that word...........

Alicia said...

Wow, anonymous. For you to have an opinion on the issue is one thing, but to attack a mother directly is completely another. Whether you know Signe or not, the fact is that she raised a child with special needs for 22 years, and when she found out that Lauren would also be placed in that category, she chose to do it again.
Maybe it is a pro-life issue more than anything, and if it is, the only other option she considered was adoption. Choosing to respect the life that she created enough to say "I can't give you what you need." is not "getting rid of" anything.
I can only assume that perhaps you are holding onto some guilt over a decision that you have made, and for that I am sorry. We have a right to state our opinion on a subject, which she did very respectfully without revealing anyones identity. It makes me sad that you have so much anger in your life.
Signe, you guys are amazing. Your strength inspires me.

TUC said...

Anon,

Having conflicting thoughts doesn't make you a hypocrite, acting against your stated beliefs does. Signe struggling with her feelings while first dealing with a diagnosis is in no way hypocritical because her actions ultimately were in line with her beliefs.

And as far as that other mom goes? I understand it all too well but it still disgusts me and makes me sad... especially when I look at my beautiful daughter every day and wonder why someone would want her to die rather than raise her. I feel sorry for that mom. What she lives with is far worse than having a child with ds.

Tania Ratu said...

Oh 'anonymous' you are such a faceless coward for making those untrue comments. What a sicko, I pity you.
Signe, I was so touched my your post, and continue to admire the way you hold your head high with all that life throws at you. You have learned the truly important things in life, love and family. Without Lauren you would have less of that perception. It must have been a wild moment to learn of the woman's situation, but you handled it with your usual dignity and grace. I honour you, sister!
May more people speak out against ignorant idiots like the doctors you spoke of.
Loads of love to you, dear friend,

Christie Taylor, proud mother of Wil said...

Signe,
Once again I have tears streaming down my face as I read your words. You are definitely blessed with a gift to touch the hearts of others. It upsets me so much to read the words of anon. What I see is just fear of the unknown. Ignorance is a very dangerous thing. Do yourself a favor, Anon, and I mean this from the heart, not bitterness, please interact with people who are "different" from you with an open mind. You will be surprised how it changes something in you, and only for the better. You will grow from it, and from your note, you have lots of growing to do

April said...

Anonymous-
Shame on you, whoever you are! Obviously not too big of a person since you didn't have the guts to post your name. I am not sure who you are or how well you know Signe. It's clear you don't know her too well, because you would have known the dilemma she faced in the first place when she was pregnant. You would have also known how much pain she was in over the situation. And you would see she realized that wasn't the way to go for her.
You should be ashamed of yourself. Out of all of the mothers you could nitpick, you chose this one? Not a smart choice. I bet if you took a walk for just one day in Signe's shoes, you'd eat your words. She has been through so much, still deals with so much and has still come out with a smile on her face, love in her heart, and goes one step further and reaches out to others to help them in their grief. I'm pretty sure she is 1000 times the person you are Anonymous.

Jenn said...

Anonymous, honestly, look at your own issues before accusing others of being "a hypocrit" (sic)

I was pregnant at the same time as Signe. My daughter is about 6 weeks younger than Lauren. We are blessed in that she has no health issues other than probably allergic asthma.

But when we were tested, there was a fairly high (1 in 25) chance of Trisomy 18... which is a genetic abnormality like Down's, but usually fatal.

Did we consider abortion? Yes. Did we choose not to? Also yes. We decided to take her as she came instead, and we feel blessed that she does not have additional challenges. But there were several weeks of that pregnancy when we didn't know whether our Lizzy would live or die, and if she did live, whether she would have enormous physical and mental challenges.

It's only natural to have mixed feelings when something life-changing looms on the horizon.

Anonymous said...
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Gabe, Curtis and Dav

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