Tuesday, March 28, 2006

Creating your own Reality

From the first moment we find ourselves faced with a PPD our life is forever changed. In a moment we are shattered. Our reality is shattered and in that next few minutes we have to construct a new reality one that we can accept enough to get off the table and walk past a room full of smiling pregnant Mom's without screaming at all of them. Usually we can use denial just long enough to get to a room where a Doctor is sitting there with his papers doing "his job" deconstructing our life.
We use anything we can to handle the news first we hear the news that 90 percent of people in our situation abort. We make that identification (also a defense mechanism)
Those that never considered termination begin to think maybe that is the way to rebuild the rubble that is now our life.

IT IS AT THIS POINT that you chose. Am I going to spend my life in a FANTASY a reality that I created so that I can accept what I am going to do, or are you going to strip away everything that gets in the way of your core values and let your heart lead you.

When you chose to live in a reality that you create you will forever have to keep up that facade. You will overcompensate by throwing yourself into things that you feel like validate you. Like convincing other people to be a part of your reality.
You will project your feelings of blame and guilt onto the child that you aborted and on Down syndrome or whatever your child's diagnosis is. The diagnosis becomes the enemy that took your healthy normal child. When that child NEVER existed. YOUR child had Down syndrome and was beautiful and perfect it was YOU that couldn't see that because it didn't fit your constructed reality.

You rationalize your choice saying that you chose to terminate out of LOVE for your child instead of saying that it was self doubt and fear that made your choice.
You repress the fact that your baby was really a baby at all using fetus and zygote and embryo to dehumanize it.

You tell yourself that it is YOU that made the sacrifice instead of YOUR child that died because of a choice that YOU made!

What above all else strikes me is how that anyone feels worthy to judge the value of a life. I for one would never feel like I was smart enough or wise enough to measure the value of a man. I could not hold life in my hand and be the one that says you would be better off never knowing what it means to live.


-------------------------------------------------
My First Baby Center Post (My second got deleted)

I was 19. Still too young to imagine anything worse than death. I tuned out my Doctors when they told me that my son would have Down syndrome. When they only found t chambers to his heart I wasn't concerned. My baby COULDN'T die. I couldn't survive that and GOD doesn't put more on you than you can handle. RIGHT?? I knew our road would be rough but LOVE is all that matters. Love isn't conditional. 19 years old and facing a choice no mother should ever have to face, but it came natural to me. LIFE my babies LIFE was not my CHOICE. Fast Forward a few years and as my son's diagnosis piled up. Yes we were happy. YES he was happy. But here on the new found internet I begin to see stories of women facing the same choice that I faced yet coming up with ENTIRELY different answers. I was able to read the heartbreaking stories of women facing what I had faced and felt my heart break again remembering when I wasn't sure if my baby would live or die. I am a critical thinker. Have been my whole life. I STRIVE to see both sides to every situation so I TRIED I really tried to see my son's life the way I heard it described one of pain and suffering. IT just didn't fit. Our story is far from inspirational. He isn't the most advanced child to have Down syndrome he has had medical issues but his life HIS LIFE is not sad or anything near what I would consider suffering.

I never posted here because I didn't want to condemn anyone for making the choice that they made. Once the baby is gone there is no reason to rehash the pro's and cons of termination.
Why I am choosing to post my story now is that I do feel like it may help someone that needs to hear what I have to say.

Life answered the questions that I needed answered. I questioned my own motives. Did I bring my son into the world because I couldn't face the loss of my first baby. I was told on by a lady that had Tx her pregnancy due to Down syndrome that I was bitter because I got STUCK with my life and was upset at her because she was fortunate enough to know better than to end up in my shoes. Being the critical thinker that I am I TRIED to see her side. All I seen was her disbelief that I could be so happy with my "damaged" child living "her worst nightmare"

I went through the stillbirth of my son and 3 other miscarriages and I was faced by how little chromosomes actually meant. I came home after leaving my precious baby in the hospital to be autopsied and felt my chromosomally abnormal son's arms around my neck his warmth and his peace melting into me and wondered WHERE is the grief I am suppose to feel over Down syndrome. I would have traded my stillborn babies chromosomes in for T21 just to have his little heart beating. To bring him home to meet his brothers.

My life came full circle. My son with Ds was diagnosised with Autism that year. Our family had been through all kinds of trauma and here I was pregnant for the 7th time and at the 20 week scan they seen fused fingers of Trisomy 18. Cleft lip and hypoplastic left heart syndrome.

SAME SONG SAME MISERABLE VERSE. You have a choice to make. 10 years older wiser. I had seen the best and the worst having a child with a disability could offer. NO one was better qualified to make a choice than I was. I KNEW the FULL weight of any choice that I made and for 11 days I layed on my couch every time the baby moved it was painful. HOW can GOD do this to me again. I raged against the world! It wasn't fair.

I do not know what happened in those 11 days but when I realized the choices that I made as a naive 19 year old that believed that Love fixed everything was the exact same choices that I as a 29 year old was making NOW. THe first time I had made my choices by heart and they were the exact same choices that I was making NOW. NO AMNIO too big a risk. LIFE my babies life is NOT my choice that their time on this earth is theirs. THEY belong to GOD not to me. I felt this incredible feeling of being in the perfect will of God that has lasted me throughout the last two years. Life gave me a gift it validated my beliefs and my convictions and it showed me that I was living the life meant for me.

That is my story. I am mother to three amazing little boys and have four angels in heaven. When I hold my children I am always FULLY aware of their value. If I could choose one word to describe me it would be grateful.

One thought that holds me is that when I lay on the bathroom floor of the hospital after hearing the news that my son had no heartbeat and that we had to go deliver him I lay there in the hospital gown not caring how dirty the floor was wishing with all my heart to die with my baby. I felt so alone and so forsaken by God. MY heart BEGGED him to make it all a mistake for someone to come and tell me that it wasn't true. Three years later as I held my youngest son Evan it hit me that EVERYTHING in my life had been for this moment. When they held up his cord and showed me the true knots in it and I realized how close I came to loosing him I heard a voice telling me That's God's fingerprints. I FELT what it feels like to be in the perfect will of God and there is a peace that passes all understanding.
My son having Down syndrome does not define my life or my family it is just part of what makes us the family that we are. My children have a bond that is unlike anything I have ever seen. I watch as my middle son shows so much patience and understanding far beyond the average 6 year old. Down syndrome may in part make us the family that we are but not in a negative way. We are happy. My children are happy and our life is FAR from a nightmare.

------------------------------------------------------------
My post on Ds a Peek into our lives


I honestly don't know what I would do without Kaden.

Kaden is my Destresser. If I am having a hard day or pushing myself to hard. Kaden seems to have a radar to pick up when I am not at my best and he will come running. He will climb in my lap and giggle.

No one can make me feel more loved and needed than Kaden. He will by pass a room full of people to bring me a drink that he wants opened. It is nice to be number one to someone. He likes me to give him his food. So funny this morning when John handed him his oatmeal for breakfast he got up and brought the bowl to me. Not because he wasn't hungry but because he wanted me to set it on the table for him and not John.

He doesn't sleep unless he has his hand in my hair.

I can't explain what being loved like that feels like. My other two boys lets me do for them and it isn't a big deal if I do it or John does it or Granny does it or even the babysitter does it.

Kaden reminds me of that parable in the bible when Jesus healed the ten lepers but only one came back. Kaden is my one in his way he says Thank You.

Kaden is the only person to ever make me feel irreplaceable.

Kaden has this laugh that can make everything that is bugging you just seem so far away. It is magical. It comes from deep inside him and just bubbles out of him.
He is Joy redefined for me.

I knew that the peacefulness about Kaden worked for me but didn't realize others felt it until his new teacher and his new aid told me that they dread when kaden misses school because Kaden seems to make their whole day run better. I ask them what they meant and they said that they just feel happier when he is around.

Kaden has gotten me through the darkest moments of my life and has made the happy ones even happier.
I am thankful every day that out of all the people in the world that God chose me to be Kaden's mom. Then adding Jonathan and Evan to that. I tell ya. I feel pretty lucky.

Kaden is so much a part of who I am. Everything I think and feel is all mixed into the filter that having Kaden has given me. He has humbled me and gave me patience. I can't take a breath without feeling how blessed I am just to have the chance to be the Mom to my three boys.

Kaden adds to his brothers in a way that I can't explain. My middle son has ADHD and could easily be seen for his problem behavior yet in all his school reports they write. Jonathan is the most compassionate child. He is gentle and kind. He talk to those that do not talk back. He treats everyone like they are important. He befriends kids that don't have friends. He tells the older boys in Special education how cool they are cause they know how to play some video game. He makes people happy. At 6 years old he brings that much just to the children at his school. Where did that come from??

My two year old will speak to me and my husband but will sign all his words to Kaden. He at 2 see's Kaden as his hero which in return Kaden loves Evan more than anything else in the world.

Watching those relationships in my children I am so amazed and so grateful to be a part of it.

If I had a list of lives and could choose any one I wanted I know I would choose my life.
I keep trying to figure out how people perceive my life as hard or less than theirs because of the challanges having a child with a disability can bring. I would not tell you it is easy.

Being a parent is NEVER easy. But the pay off is beyond measure. Love tried by fire. Like glass in an oven the impuritys melt out leaving only the purest and most beautiful part behind. That is what it feels like Kaden does to my life. He purifies. Simplifies. Redefines and multiplies.
To love to the highest power.

That is a peek into my life.

Radonna
----------------------------------------------

My post on Continuing a Pregnancy with a PPD

I have felt the earth spin sitting on the ultrasound table, unable to pray because I felt so abandoned. Angry at myself because I just HAD to have another baby. I knew when he left the room that something was wrong. I sneaked a peek at the dates and I knew my baby was measuring way to small for 20 weeks. At that moment I wished that I had never gotten pregnant. I was angry this was happening to me again.

When the Radiologist came back in he begin to do the scan and I kept asking what is wrong. "He said I am just checking you it's routine"
I snapped at him
"This is my 7th pregnancy I know ROUTINE isn't calling in the boss. Calling in the boss is either for a dead baby or a sick one! I know he isn't dead so WHAT are you looking for"

He said "if you lay back and let me look I will tell you"

He talked me through the ultrasound, showed me where he seen the cleft in his lip, showed me the abnormalities he found in his heart. Told me he thought it was HLHS. He showed my his hands that were balled into little fists and he showed me these grey area's on his head that were signs of Trisomy 18. I kept asking him but
"it could be just Down syndrome right."
He told me that it looked more like Trisomy 18. I told him that my oldest son made them think Trisomy 18 too but he had Down syndrome. I just wanted some hope that my baby wouldn't die and he gave me NONE.

In that moment I wished to die. I didn't see how a person could keep existing when every breath hurt as bad as mine did.

I immediately scheduled a follow up at Vanderbilt; It was 11 days away and it felt more like a year, every kick reminded me that I was going to loose this baby too. I was lower than I had ever been in my life. I begin to try to plan what would happen after Vanderbilt confirmed the diagnosis.

What went through my mind could fill a novel because I knew so much more this time. I had read and studied about Trisomy 18 and I knew that most babies did not live and while that I knew I would treasure the life of that baby while he or she lived Loosing a baby after I had known and loved him or her would just be more than I could take.

I asked myself. "COULD I terminate, Is it in me to do this?" I wanted to be able to say yes at that point because I just wanted to stop hurting. It reminded me of my second miscarriage where I was bleeding heavily and kept going for scans and there the baby would be his little heart beating away then they would send me home and the blood would come and I would go crazy again. We named that baby Clarke because he was our little super baby he kept surviving when he wasn't expected to. It was a mixture of intense pain and relief when they said he had no heartbeat. Pain that I had lost my child but relief that my life did not revolve around my bathroom and checking for blood.
Getting to the end of something meant that you could move past it. I wanted to move past this part of my life more than anything in the world.

Before I posted this I asked myself in hindsight "Was termination ever really an option for me" and I can't answer that. I can't even look back with the same mindset because it is like looking at a different person.
At that point in my life I was not a christian. I couldn't understand how My God could have seen me on that floor that day I found out William was dead, in more pain that a human should ever have to bear and not intervened somehow.
I even said I would rather be in hell than in heaven with a God that let me loose William. I have repented and been forgiven for that but I did say and feel those things at that time in my life.
Religion wasn't holding me back from terminating.

What did decide for me, Was just the memory of four little hearts that I watched beat on screen over and over. Four little lives that I invested in. Four little angels that seeing their still bodies on the scan made me will their little hearts to start again. With William he was so big and so perfect that it didn't hit me that he was dead. When I came to that realization I shook my stomache thinking jarring him might somehow bring him back. Those little hearts that I would have given my own life to make beat, were what made up my mind. I could not be the one to decide to stop a heart. As long as that heart beat there was hope. Hope can be so cruel but hope is the only thing that makes life worth living at all.

My son did not have trisomy 18 and no one has ever been able to explain why that they made such a big huge mistake. I mean who holds these people accountable when they are wrong and the baby is healthy. Last thing on my mind was finding out WHY my baby didn't have Trisomy 18 and all the other problems I was told. I was too busy loving him.

You can't define a baby by chromosomes or Ultrasound scan's.
I believe with all my heart as long as there is life there is hope.

--------------------------------------------------------------

0 Comments:

Post a Comment

<< Home