a video worth watching

Please watch this video montage put together by a Mom from my online Down syndrome support board. She is the mother to a little girl named Gabby who was loved and wanted, just as her other children are. The fact that Gabby would have Down syndrome did not sway her love, commitment or longing for her.

She already had 2 beautiful daughters and Gabby brought the count of beauties up to 3. As you will see, Gabby was absolutely precious, vibrant and very loved. As planned, Gabby had open-heart surgery, something quite common for babies born with Ds. The surgery went well but the recovery did not and Gabby did not make it.
The commentary on the video reminds us of how even the difficult parts of life: the parts we don't choose, become the most important, impactful and amazing...anyway...the video (and yes, Lauren is in there, too!):

Motherhood: it's like Deja Vu, all over again....

So, a couple of weeks ago I was with Chaz and Lauren at the children's hospital at University of Michigan waiting for Lauren to get her hearing tested. This had been a much longer than necessary amount of time spent at the hospital - who knew that a 2 year old could go 9 hours during the day without eating?? We're in the parent's waiting room waiting for the nurse to come get us and tell us that Lauren was absolutely fine.

While there, I began chatting with a couple who also had a daughter they were waiting for. Her procedures were much more intensive, serious and long than Lauren's mere ABR. This Mom, like me, had been blessed with a child, years ago, who has required much of her and proven time and time again, that she (the daughter) was up for the task and given Mom the opportunity to dig deep into herself, over and over again, to find the strength, patience, nerves and grace to face the next day with the same, un-bewildered face that the rest of us are used to living with.

(If you haven't read this blog before then you don't know that my oldest daughter, Ada, 24 years, has Russell-Silver syndrome and autism: a charming & puzzling combination of smallness and drive.)

While waiting and talking, Chaz commented that I'd been "doing this for a long time" and it is so true. When my first born was given to me, 24 years ago, I was catapulted into an unknown world: one of diagnoses, uncertainties, angst, dr's visits and waiting.

Fast forward many years and here I am, again: raising a child who is different than most, raising a child with an uncertain future and lots of unknown quantities.

But, you know what?It feels good. It is familiar, it is uncertain and it is hopeful. Ada taught me more than I can ever say. I wish I hadn't burned so many tears worrying about her but at least I don't have to do that for her little sister, Lauren. While Lauren may not always get the best of me: 45 years old, arthritic, fibromyalgic, tired, worn-down and weary--- at least she gets a mother who isn't worried about every little thing: one who knows that her potential is every bit as important as her diagnosis and that no amount of worry ever adds up to the outcome.
I have a perspective that cannot be bought or paid for. People describe me as calm, accepting and peaceful. Hard to believe but it's true. My children have defined much more than any thing else in my life.
So, as I sit and stack blocks for the 1 gazillionith time, I remember that this is important: this is what my child needs right now and I know that because I learned it from my firstborn child.

Thank God we get do overs.

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.

Through their eyes....

Ada at Special Olympics, 2008

Ever since my first child, Ada, was a little girl I've wondered what the world looks like through her eyes. We are all unique and have our own vantage point, but some people 'stand out' a bit more because of their differences.

Ada has a small pixie-face, an open, trusting smile and long, beautiful fingers, all wrapped up in a body the size of a 10 year old child. She is 24 years old and has been this size since she was about 10! She has a rare from of dwarfism called Russell-silver syndrome, as well as autism. She is truly unique!

It took me a long time to forget how different she looked from other people because people just love to stare at her. She smiles, I try to.

My mantra was always this:
she is just as different from you as you are from her.

And, I believed it..and still do. Not everyone comes in the same, general size or shape and as human-beings, we have to accept this.

But, it's not easy for others to accept that my child doesn't fit their image of what a child should look like. Oh well.

I have spent countless hours worrying about Ada, crying about her challenges and trying not to take all of the comments and stares so personally.

Now, I have another little girl, Lauren, and again I wonder what information she is receiving from the world. In her mind she is charming, charismatic, cute as all get out, funny, interesting, curious, intelligent and loving. She can climb mountains, knock down mountains and conquer the world.

I know that not everyone is going to see that in her, just as not everyone recognizes Ada for the peaceful, accepting and fun-loving young woman she is.

When people see Lauren, some see the traits of Down syndrome...the almond eyes, the awkward walking style, the signing in place of speaking....and, they think about it what they will, based on their individual makeup.

I imagine that they place some sort of value on what they perceive as her most obvious attributes: Is she as cute as a typical child? How well is she doing for a child with Ds? How much time does her tongue spend outside of her mouth? How hard must it be for her Mom to raise her? Is it worth all of the trouble?

the answers:
Certainly!
Well!
Not much!
As hard as it is raising any child.
So much.

I have spent almost half of my life working as a mother and trying to get inside the heads of my children, especially my two daughters with special needs. I want to know what they know and see what they see. And, I want others to see in them what I see, though I know that will only happen occasionally and with people who make an effort.

I don't know how I got so lucky to be blessed with these amazing children; I just hope that I can someday be worthy of their praise.

Now, Lauren and Ada have one another to love and accept. They get this love and acceptance from others, but it seems right that they can enjoy it from their own unique perspective, without the weight and judgment that the world puts on them.

Zoo Trip - LoLo style

Today, I went to the Toledo Zoo with Gabe, Lauren and Ada - it was a spur of the moment excursion; you know, those outings that usually turn out the best because the lack of planning means that nothing could go wrong.

Gabe was in charge of the camera for most of the day - so the pictures, if they didn't include him
were probably taken by him...my budding Conny Wenk!






Close up at the polar bear exhibit....
but Lauren does not want to be a part of
my Nanuck of the North photo shoot.
















Gabe modeling one of the many animal masks at Nature's Neighborhood ( a very fun, and interactive Zoo-playground)




















Getting some pointers from professional Carousel rider-Gabe.














Sweet as honey, straight from a bee.



















Definitely a good egg...















Chilaxxin in the tree house...













and getting ready to roll on out....