It's Not A Competition

It's not a race. It's not a competition. 
Yeah, sure.
In my experience, people who say that are the ones winning.

...

Every day seems a race, and I always seem to be running backwards.

I hate to run. Ask any of my high-school coaches. The only time I ever enjoyed running was if there was a soccer ball in front of me, but I digress.

Before I got pregnant with Matthew, my competitors were all around me. My friends, the lady standing in front of me at the grocery store, cousins, and anyone close to my age. Every day of my life was spent anticipating and yearning for that promise of a step forward: two pink lines. Friends and co-workers would become pregnant, give birth to beautiful, bouncing babies, and start over again. Rinse and repeat. While I, on the sidelines with an "injury", would dream of the day I could step onto that track and run towards the finish line. Married friends, both older and younger, who'd been married less time than I had, became pregnant, and bubbled with happiness, smiles, and sported a round belly. Again, I looked on, smiling for them, savoring just the smallest taste of their new-mom joy, and envied each moment they had that I did not.

I spent years training for that big race. Years more than anyone else I knew. Did I need it more than them? Were they better prepared than me? Who knows. It was searingly clear that it wasn't my decision.

Then it came. The go-ahead from the Big Coach. "It's your turn. Run." Oh boy did I. Every moment on that track, each time my feet hit the ground that carried me closer to that goal, felt a gift from heaven, and it was. I rejoiced in each ache, pain, and discomfort. It was my turn, finally.

I could see the finish line. That glorious gold ribbon stretched out before me, waiting for me to reach it. Behind the finish line, my beloved husband waited, and in his arms there was a new face. A crying, hungry, beautiful, brand new face that had every feature of Jamie except his chin. He had my chin. My world was almost complete.

As I am running towards that beautiful face, only a short distance left to run, the distance between us growing smaller and smaller by the moment, my world is shattered. Suddenly, the finish line is upon me, sooner than expected. It's not supposed to be there, I should still be running. There is a flurry of people upon me, but not with the happy, congratulatory faces I expected. Instead I am met with faces of badly hidden pity, sorrow, and sadness. Faces that make attempts at forced smiles, but instead fill my heart with discomfort and fear. Faces of intense worry. All for me. All I can think is "What's happening?"

They hand me a child, attached to that beautiful face I had been running towards just moments ago. My mind rails against reality, rejecting what is, and gouged of what was to be. "It's too soon."

The face still holds that intense beauty, but smaller. Daddy's lips move to take those first breaths, Daddy's nose bubbles with leftover fluid as air fills tiny lungs. Little tiny hands reach toward me, even though those beautiful eyes I saw earlier, are still fused shut. Little feet kick my chest, weakly, but with my stubborn attitude. Mommy's tiny chin, finishing that beautiful face, rests against my breast. "It's too soon." I fall utterly, completely, helplessly in love with that face. Never to return. It shall be fused into my mind till the day I die, but it's taken away too soon.

Someone in a uniform comes and tells me "He's almost gone." I understand what she says, but don't grasp it. My mind tells me "No, he's supposed to stay forever. This isn't right."

What seems like seconds after I say hello to my new son, my dream of dreams, I have to say goodbye.

"It's too soon."

...

I find myself on the all too familiar sidelines again. Reeling from my unfinished race, and my agonizing grief, but telling myself "You have to run."

In a cloud of cruel deja vu, I see again my friends on the track, starting a new race, before mine had even ended. Their family stands on the other side of the finish line waiting, larger than mine. Happier than mine. The prizes of their previous races there to cheer them on. 

Jamie stands slumped alone on the other side of the finish line, waiting for me. The absence of our beautiful face all too blatant to both of us. A weak smile, full of sad encouragement, crowns his lips. I stare at my feet, still unsteady, still recovering, but determined to run. I look to the Coach, and ask to be put in.

Now I wait. Again. The fresh memories of that race over too soon still slicing in my mind and heart. The overwhelming desire to still be running for that beautiful little boy grates my insides. The track stretches out before me, looming and impossible. I've picked up what pieces I could find of my broken heart, bound them together with the thinnest thread of hope, and I wait to be put in.

It is a race. Those ahead are too focused on what's at the finish line to look behind, and those behind are left to watch the winners as they reach their beautiful faces.

Here We Go Again...

Jamie and I decided we would be trying for baby #2 right away. While it is extremely difficult emotionally to even think about being pregnant with another baby, when I still should be pregnant with Matthew for another 10 weeks, I know it's what we need to do. I'm scared to death. I have anxiety attacks sometimes when I think about it. Not because I am scared to have another child, but more at the possibility of losing another precious life.

The road we have traveled together over the last 4 years has been intensely, ridiculously, frighteningly difficult. Countless times I have envied friends around me who have had "easier" lives, and then I realize, I wouldn't be the same person without our trials. To be honest, I don't know how I've made it this far. After 3 1/2 years of desperately trying to get pregnant, then the miscarriage, the out-of-my-mind scariness of finding out about Matthew's heart defect and possible downs, and now losing him to a fluke. There is no time more apt than now for us to say "life is unfair". I used to say that a lot, when I was going through what I thought was hard times. I laugh in irony at those times. How naive we are until we experience life for ourselves.

It's so hard not to let my bitterness grow. I try to keep it at bay, but it's still there. Bitterness towards God for taking him away after we'd been through so much, at the world for continuing on without him, at those around me, family and friends, for having children and healthy pregnancies, and at myself for failing to bring a healthy boy into the world at the proper time.

You can't imagine the thoughts that pass through a grieving mother's mind unbidden. I look at people around me, and wish they would know just a hint of what I have gone through. If only they could understand a little bit. Yet, I don't what them to understand. No one should have to understand this horror.

More than anything, you want to trade for your child's life. Anything you could give, you would. I would have gladly given my life for his. Jamie would have as well.

It is so hard to have an overwhelming need to sacrifice, but not have that choice.

Every day, I dream of a world that I would have had a choice. I've dreamed of time travel, heavenly intervention, just about any fantasy you can think of that would make it possible for him to still be here. But no matter how many times I dream of these possibilities, I wake up to the real world. A world without him.

In the midst of all this, we have the desire for another child. A younger brother or sister for Matthew. Our second, yet they will live as the first because Matthew cannot. I am scared of the pregnancy; of the months in between those 2 pink lines and that first wailing cry. I'm scared I will get attached, and love that baby as much as I loved Matthew when he was growing within me. I know I will, and that scares me the most.

At the same time, I yearn for the day that baby will arrive, healthy, pink, full of life, and ours to keep. I live only for that day. All else is unimportant. It is our main focus, our only life goal, and the desire of our hearts. We are parents without our son, but one day, hopefully soon, we will be parents to another child. One who will stay with us, and that, is the reason we are able to make it through each day.

Embracing the Pain

Each day brings it's own trials. I never know what to expect when I wake up in the morning. Will I be reminded suddenly of all the feelings I work so hard to control and break down in sobs? Will a friend announce a pregnancy, or birth, throwing me into a pit of despair and aching? I just don't know. Each morning I put on my face of normalcy, but every shred within me fights against the display. Nothing is OK. Nothing is right.

I miss the hope and joy. Never before have I been without both. I was so hopeful, my entire life. Now every small piece has been scattered to the wind the moment my little boy passed in my arms. I mourn it. I miss it. I miss being happy. I miss enjoying life.

No one knows me anymore. The person they knew for 25 years is gone. I feel myself so incredibly changed. Yes, some remnants remain. Yes, more will surface as the years go by and I find my purpose again, but for now, I am a stranger to myself.

People still pray for me and Jamie. We need it desperately. People try to tell us to find our comfort in God, and to look to him. What I know they don't understand is, He feels our grief just as deeply as we do.

There is no complete comfort, at this point there is very little comfort. Only distractions. We do not wish to be rid of that which makes our days so hard. Our grief is our comfort. Our sadness is our healing. I am so thankful for each stabbing pain, debilitating ache, and agonized tear. They mean that Matthew mattered. He was loved more than anyone else will ever know. His father and I feel each throb of unending love for him every moment we live, and it's because of our grief that we are able too.

It does not get easier. You learn to cope a little more each day, but it does not lessen. I've learned, I do not want it to get "better". I want to feel that intense emotion every time I think of him. I do look forward to the day it turns to different emotions, instead of just pain. Love to replace bitterness, hope to replace despair, and joy to replace sorrow.

Do you see my mummy?

Do you see my mummy? 
If u see my mummy, 
please hold her tight for me, 
cause even though shes smiling, 
her pains not easy to see. 
Shes hidden it deep inside her, 
a smile upon her face, 
so u don't feel uncomfortable, 
or put in an awkward place. 
She will laugh and she will smile, 
sound normal on the phone, 
but deep inside shes screaming, 
''help me i'm so alone'' 
i can hear also her bother, 
cause its screaming from her heart, 
she dosn't know why this happened, 
why we had to part. 
shes all mixed up inside her, 
her body is filled with pain, 
please someone help my mummy, 
before she goes insane. 
Just talk about me to her, 
don't think that the pain has gone, 
that she should be over me, 
for her pain will go on and on. 
She held me in her body, 
then held me in her arms, 
she wanted to look after me , 
and keep me away from harm. 
But she feels in a way, 
that she let me down, 
and i cant reassure her, 
that i am always around. 
I want to hug her tightly, 
and take away her pain, 
but i cant do that from here, 
wait until we are together again. 
I am and always will be, 
the baby that she bore, 
and even though you loved me, 
my mummy loved me more. 
Don't compare me to a lost dog, 
or a granddad or a nan, 
she will help you with your worries, 
if she feel she can. 
Don't expect to much from her, 
its her child that she misses 
shes like a china doll inside, 
could crack up into pieces, 
so hold her please so gently, 
tell her not to be afraid to cry, 
and listen to her go on and on, 
"why oh why oh why?" 
She's not the person you once knew, 
yes shes changed alot, 
one day her smile maybe genuine, 
one day it may not. 
So please let me rest peacefully, 
i wont until you know, 
that my mummy need your support, 
not that silly look of "so?" 
That as i barely breathed, 
i wasn't really real, 
that its harder to have memories, 
how do u think that makes her feel? 
cause we have many memories, 
you weren't lucky enough to share, 
I wasnt a thing that wasnt meant to be, 
she carried me past the maybe stages, 
she then gave birth to me. 
So if you see my mummy, 
give her a gentle squeeze, 
don't tell her what i've told you, 
she wont be too pleased. 
She likes to think its private, 
the pain is not being shown 
but it is there believe me, 
she is feeling so alone. 

NEGATIVE!

Amazingly happy to announce that God has yet again showed himself faithful.


Matthew's blood work came back NEGATIVE for Downs syndrome. With a 99.1% accuracy rate, we are astounded and amazed to hear such wonderful news. Thank you all for your prayers and please continue to pray for the long road ahead with his CHD.

Acceptance

Lately, I have been struggling, grasping and embracing the multiple facets of acceptance. Never before have I encountered the desire and need for each type of acceptance as I have over the last week and a half.


I've gone through worrying about and coming to terms with each type of acceptance: personal, social, and heavenly.


The first few days, Jamie and I faced the overwhelming trial of personal acceptance. For my dear husband, it was little to no effort to jump that hurdle. After recovering from the initial shock of the news, he immediately adopted the mindset of this is our son, regardless of the health and mental problems he comes into the world with. When people have asked how he is doing, he replies "I'm a rock", and he is, for me and each step we face: steady, straightforward, reliable and understanding. This is not a prideful or arrogant response, but a very honest one. I am amazingly grateful for him!

For me, it was a longer and harder journey. I have worried many times, if this little boy has downs, would I be able to love him the same. Yes! Will I still be proud of his accomplishments and feats? Yes! In public, will I be ashamed of his issues, and treat him differently? No! Will I be able to love his different appearance, and adore each feature as it is? Yes! Each question has raised in my mind, and each has been answered adamantly. I now realize fully, that I will love and adore Matthew no less than if he is born with typical chromosomes. Instant, gratifying, abounding love will flow without hesitation the moment I see him.



Secondly, I have been incredibly worried about acceptance in the eyes of my friends and family. When I first discovered I was pregnant, I imagined all the possibilities. Play dates with friends and their little ones, showing off my cutie pie for the first time at church, and family gatherings with our new little boy. My imaginings have included many ooo'ings and awww'ings. All of these were dashed when I first heard the words "downs syndrome".

Any fears have been sated thanks to an overwhelming amount of support and encouragement from those around me. Not just support, but very clear and passionate excitement for Matthew to arrive, however he may be health wise or in appearance. That has been an astounding help for me to realize everything will be OK. Matthew will be loved dearly not only by his parents, but by all of those around him, and I cannot wait to see that.


When I first took this before the Lord, I didn't fully realize the gravity of His involvement in this whole situation. To me, it was a problem that Jamie and I had together that needed prayer, and to be hopefully fixed by Him. It was almost as if, in my mind, that we had created this child, and something had gone wrong, so you take it to a specialist, and pay him in prayers to fix the problem. So, so, so far from the truth.

He is the one who created Matthew, and has analyzed, planned, and drawn each tiny part of his body, mind, and soul. Matthew was never ours until the Lord gave him to us. We in reality, had very little to do with his creation. He has had the little guy in his hands since before the beginning, and has loved him so much more for each little unique piece than Jamie and I ever could or ever will. He knows each nook and cranny of his little heart, and the ins and outs of every part of his still-forming body. There is no greater acceptance, than of the Creator and His creation. If ever Matthew needs to find acceptance in the world, he will only have to look to His heavenly Father to find it.



Today we wait for the results of the downs syndrome blood test. I am so in between on what I believe the answer will be. One moment I think negative, one moment I an convinced positive, but truly it doesn't matter.

The biggest worry I have right now is concerning his CHD (congenital heart defect). The type he appears to have is called an AV Canal complete defect, which means there is a hole in between all 4 chambers of his heart. While still very operable, he will definitely need surgery in the first 6 months of his life. We go for an echocardiogram with a cardiologist from Hopkins this Friday, and will be able to get a more definitive diagnosis as well as find out if he has any other heart issues. The cardiologist will be able to tell us a time frame to expect surgery, and to talk about birth options.

We are looking at a very good possibility of him being a preemie, and/or having to stay in the NICU (no way to know how long).


All in all, regardless of the outcome, all I want is for him to be here with us. The struggles and difficulties mean nothing compared to the excitement of being new parents to our little boy. We are ready.

Smiles, Tears, Prayers, and Peace

I watched my little boy on the black and white screen as he sucked his thumb, kicked around, and just looked as cute as could be. There are very few things that bring as much joy to my heart as getting to see Matthew. It makes me long for the day that I finally get to meet him after all these years.


The tech was incredibly nice, laughing along with me at his antics, jokingly telling Matthew he was being difficult and uncooperative, and making me feel like an excited mother instead of an appointment to get through.


She started asking some odd questions, but I was so caught up in watching my son that they didn't even phase me: "Is there anyone on either side of the family who is below average height? As in little people?" I adamantly responded no and laughed because his father is 6'2". She began to remeasure the back of the head a couple times, and grew more quiet as the ultrasound went along. Again, this really didn't phase me much. I was in the "oh nothing will happen to me" state of mind as most first time moms are. My Matthew was and is perfect, so there was no way they'd find anything wrong.


After about 15 minutes she excused herself to go get the doctor, this was the first thing that registered with me as wrong. Tech's never get the doctor unless something is wrong, but I ignored that little pinch in my mind and oooed and awwwed with my mom over the pictures she had printed out for me.


As soon as Dr. Lantz walked in the door my heart sunk. He had a very worried and grim look on his face. He was about to have to tell a young expecting mother that there was a couple things that appeared to be wrong with her precious baby.


Very calmly he explained that there was a hole in Matthews heart between all of the chambers, and this would most likely require open-heart surgery within the first few months of his life.


OK. I can deal with this. I asked some questions, tried to keep my head clear and alert before breaking down, but there was more.


He explained that there was also a thickened nuchal fold (the skin at the back of the babies neck), that was a sign of Down Syndrome. This hit me like a bag of bricks. The type of heart defect that Matthew appears to have also is a sign of Downs Syndrome, and the fact that he has both means there is a very good chance of him having this chromosomal abnormality. He then explained that he was a little worried about the bones, as they were all measuring 3 weeks behind (normal limits is 2 weeks behind), and this can be a sign of dwarfism.


So, I am looking at having a child with a major heart issue, Downs Syndrome, and could possibly be a dwarf? Wow. Not what I expected in my wildest dreams.


I am amazed that I did not break down right there and then. I held back my tears, had my blood taken for a test, and tried to hold it together before we got out of the building. I made it to the elevator before I started to cry.


I honestly cannot tell you all of the thoughts that went through my mind over those next few hours. There were some of the most unthinkable thoughts, and some of the most fear induced.


I called Jamie desperately 3 or 4 times before I finally got a hold of him. "Somethings wrong with the baby" was all I could get out at first. I asked him to come get me from my parents house, as there was no way I could drive. I stayed on the phone with him till we got to my parents house, so I could keep hearing his voice.


I walked in the door, went upstairs to the dining table, and sobbed. My dad came and gave me a hug, and I waited for Jamie to get there. I had been laid bare, in utter desperation, and there was only one person in the world who could make me feel safe again. Jamie has been absolutely amazing the last few days. To him, nothing has changed except we may have to walk a slightly different path with Matthew than we had expected. He believes Matthew will not have the Downs, but if he does, then so shall it be.


I barely got through that night and next day. I went numb. It was the only way I could stop crying. I hate to cry! It makes me feel so weak and vulnerable. A feeling I am not used too, but sometimes, Life needs it's tears.


I finally started to feel better on Sunday, with the help of overwhelming encouragement from everyone, and from my friends at church, including our pastor and his lovely wife. We love them! Each new morning brings more peace and acceptance.








Sunday night, after driving home from dinner with my grandmother and Jonathan, I sat in the driveway for a good long while and just cried out to God.


I prayed and begged for the selfish things: for Matthew not to have Downs, for his heart defect to not be as serious, for all the odds to mean nothing when those test results come back. Not so that Jamie and I don't have to go through all that, but instead, that Matthew would be a healthy little boy and be able to grow up with only the normal obstacles. That was my hearts cry. I am willing to go through it all. The pain, the suffering, the learning, and whatever else comes our way. He is 1000x worth it.


After my selfish requests, I asked for strength to put it all in his hands. To put my precious child in his arms, and to accept whatever He decides for Matthew. As a control freak, nothing has been harder for me than letting go and trusting God. Even in the small things it's hard for me, much more so with my son. 


Peace. I asked for Peace that I couldn't understand. There is nothing quite like being in the middle of a crisis, and feeling that peace wash over you. He has blessed me each day after with his loving peace, and I can tell you, there is nothing that could have helped more.


He has little Matthew in his arms now, and when he is born, he will hand him to Jamie and I, perfect in His own design, shaped and molded just for us.