reaching out

After returning home yesterday from going to the cemetery and funeral home, I collapsed on the bed and grief and sorrow overtook me. On one level, I am so weary of the tears, of the grief. But no matter how hard I try to stop the unceasing tears, my new companions, sorrow and grief, will not let me rest until I acknowledge them--wrestle with them. 

In the midst of such a moment of unending sadness, David surprised me. He reached up with his little hand and pressed up near the top of my stomach. It was not the familiar sharp jab of an elbow or foot. Nor was it the shifting and turning I sometimes feel. It was the feathery feel of little fingers. He was reaching out, reaching up with his little hand, almost as if to say, "I'm here, mommy." Tears of sadness became tears of joy. No doctor's prognosis, no trip to a cemetery can take away the joy of that moment. And no one in the world but me was privileged to share in that moment with my son.

Yes, in the spring, my arms and the bassinette that I bought will be empty. There will be no baby to proudly introduce like my friends do after 9 long months. But my heart will be full of tender, precious moments with my son--memories that fill me with joy--and no one can take that away.

Smith Family // Story Part 1

Smith Family // Story Part 2

Smith Family // Story Part 3

http://www.youtube.com/watch?feature=player_detailpage&v=ZBQYda-mkTM

a good quote

“Nothing that you have not given away will ever be really yours.”--C.S. Lewis

Something mildly comical

Bryan again. Yesterday was a rough day. The hardest part for me was to go to the spot in the cemetary where David's body will be buried. The grief was compounded seeing all of the other baby grave sites. Upon looking  at them, we noticed the grave of a young child that we knew several years ago that had suddenly died. Another sad moment was filling out the paperwork with the funeral director and having to write David's name down. We discussed the logistical information, and Heather later pre-registered at the hospital. The day passed, and it ended right on schedule. We don't have to live that day again. Yeah! Now that this is all out of the way, we can sit back and try to enjoy the remainder of the pregnacy and our time with David.

Now to the mildly amusing satire. While we were waiting in the funeral director's office our attention was drawn to several items that were on dispay for clients to consider for purchase. One of which happened to be a sequence of grave markers that showed how some people decide to have a caricature of their face put on the headstone. In short, the person (spouse or family member) who is arranging the funeral submits a photo to the person creating the headstone. A lithograph is created. This is used to cut the image of the person's face into the stone. My focus was drawn to the young model who was used to create the example. My mind, being as warped as it is, briefly shifted from my grief to the following thought process. I thought of her being introduced to a stranger at some kind of gathering. Over the course of conversation, the stranger asks her what she does for a living. She replies, "Why, I model headstones for a living." Now, where does the conversation go from there? Where can it go?

Tough day

Bryan here. Today is probably going to be one of the harder days. We have to go to the cemetery to pick out a plot and to look at the infant caskets. This is a horrible contrast to what we should be doing at this point which should be picking out a crib and other baby items.

I haven't written in the past couple of weeks because there hasn't been much to say or any developments to note. David (our baby) continues to get more active and is actually doing quite well at the moment, but I am fully aware this won't last more than a couple of months longer.

For those who have not been through something like this it is the emotional equivalent of being buried alive. Each day, a new shovel full of dirt is thrown on top of you. It becomes harder to breath, harder to move. Today we get two more shovel fulls thrown on us. If there's a limit to this, we haven't found it yet.

Our two children continue to be the bright light for us in this.

I continue to struggle to find an acceptable reason why this is allowed to happen not only to our baby but other innocent, blameless babies out there. The Bible states that "The wages of sin is death," meaning both physical death (this) and spiritual death (eternal separation from God-unless a person becomes a Christian). Our baby will never have the unfortunate opportunity to make a choice to commit a sin-and is therefore without sin.Why should he have to die then? Yes, we all carry the "sin gene", and he does too, but again he will have never sinned and therefore should not have to pay the consequence. This is the riddle that I cannot solve.

So today is one of those days where we have to place on foot in front of the other. The good thing about days is that there are only 24 hours in them. They have to end, just like every trial has to eventually end.

borrowing from Steven Curtis Chapman...

“I Will Trust You” by Steven Curtis Chapman

I don't even wanna breathe right now

All I wanna do is close my eyes

But I don't wanna open them again

Until I'm standing on the other side
I don't even wanna be right now

I don't wanna think another thought

And I don't wanna feel this pain I feel

And right now, pain is all I've got
It feels like it's all I've got, but I know it's not

No, I know You're all I've got

And I will trust You,

I'll trust You

Trust You,

God, I will

Even when I don't understand, even then I will say again

You are my God, and I will trust You
God, I'm longing for the day to come

When this cloudy glass I'm looking through

Is shattered in a million pieces

And finally I can just see You
God, You know I believe it's true

I know I will see You

But until the day I do
I will trust You, trust You,

Trust You, God,

I will

Even when I don't understand

Even then I will say again
You are my God, and I'll trust You

And with every breath I take

And for every day that breaks

I will trust You

I will trust You

And when nothing is making sense

Even then I will say again
God, I trust You

I will trust You

I know Your heart is good

I know Your love is strong

And I know Your plans for me

Are much better than my own

So I will trust You, trust You

I trust You,

God, I do

Even when I can't see the end

And I will trust You

I will trust You, I will

Even when I don't understand

Even then I will say again
I will trust You,

I will trust You,

I will

I know Your heart is good,

Your love is strong,

Your plans for me are better than my own

Yeah,

Your heart is good

Your love is strong

Your plans for me are better than my own

And I trust You

You are my God

And I will trust You

Copied from MetroLyrics.com

150

Bryan and I got to hear David's heartbeat this afternoon. 150 beats per minute...just like it should be for a baby at 21 weeks. So bittersweet...some days there are simply no words...

something to ponder

Something to Ponder

“The book of Job is not only a witness to the dignity of suffering and God’s presence in our suffering but also our primary biblical protest against religion that has been reduced to explanations or 'answers'. Many of the answers that Job’s so called friends give him are technically true. But it is the 'technical' part that ruins them. They are answers without personal relationship, intellect without intimacy…On behalf of all of us who have been misled by the platitudes of the nice people who show up to tell us everything is going to be all right if we simply think such and such and do such and such, Job issued an anguished rejoinder. He rejects the kind of advice and teaching that has God all figured out, that provides glib explanations for every circumstance. Job’s honest defiance continues to be the best defense against the clichés of positive thinkers and the prattle of religious small talk.”--Eugene Peterson

I am learning based on recent experience that the very best thing we can do when others are hurting is simply to listen and give a hug. I wish I had known this before so I could have known how best to "be there" for a friend who is hurting. People can try so hard to come up with something to say not realizing the best thing they can offer is the gift of presence. 

spiritual ears

In Sunday School, we're going through a study called One Minute After Your Die by Irwin Lutzer. We are looking at what the Bible says about death for believers as well as unbelievers. Interestingly, on Sunday, as Pastor Jeff read Scriptures from the Bible that point to the hope Christians have for new, perfect bodies in heaven, David kept leaping and squirming inside me. Normally, his most active time of day is in the late afternoon and evening. He has never been quite so active during the morning. It brought tears to my eyes to think that he was filled with such energy and was physically responding to such good news.

Did his physical ears understand what he was hearing? I doubt it. Did something in his soul leap as God's Word was read--words that describe the hope he has for a new body with no heart problems, no more death, and a home where one day we will all be together...I have to believe so. :-)

Lamentations

Lamentations 3:1-32

I am the man who has seen affliction by the rod of his wrath.
He has driven me away and made me walk in darkness rather than light;
Indeed, he has turned his hand against me again and again, all day long.
He has made my skin and my flesh grow old and has broken my bones.
He has besieged me and surrounded me with bitterness and hardship.
He has made me dwell in darkness like those long dead.
He has walled me in so I cannot escape; he has weighed me down with chains.
Even when I call out or cry for help, he shuts out my prayer.
He has barred my way with blocks of stone; he has made my paths crooked.
Like a bear lying in wait, like a lion in hiding, he dragged me from the path and mangled me and left me without help.
He drew his bow and made me the target for his arrows.
He pierced my heart with arrows from his quiver.
I became the laughingstock of all my people; they mock me in song all day long.
He has filled me with bitter herbs and sated me with gall.
He has broken my teeth with gravel; he has trampled me in the dust.
I have been deprived of peace; I have forgotten what prosperity is.
So I say, "My splendor is gone and all that I had hoped from the LORD."
I remember my affliction and my wandering, the bitterness and the gall.
I well remember them, and my soul is downcast within me.
Yet this I call to mind and therefore I have hope:
Because of the LORD's great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness.
I say to myself, "The LORD is my portion; therefore I will wait for him."
The LORD is good to those whose hope is in him, to the one who seeks him;
it is good to wait quietly for the salvation of the LORD.
It is good for a man to bear the yoke while he is young.
Let him sit alone in silence, for the LORD has laid it on him.
Let him bury his face in the dust--there may yet be hope.
Let him offer his cheek to one who would strike him, and let him be filled with disgrace.
For men are not cast off by the Lord forever.
Though he brings grief, he will show compassion, so great is his unfailing love.
For he does not willingly bring affliction or grief to the children of men.

Officially Trisomy-13

Bryan here again. The gray clouds seem fitting today. As you can see below in Heather's posting we just received the official diagnosis that this is the worst case scenario: Trisomy-13. The results came in a phone call from the doctor who had just received word of the test results. Though we have known this was to be our lot in our hearts for several weeks now, the certainty of our baby's pending death make it difficult-especially when he kicks. The challenge in the coming weeks and months will be to view each movement as a blessing/gift, not as the reminder that one of them will be his last. While I don't know if that will be possible, I do know and retain the hope that he will not suffer much as he is born into heaven-should he die before or during childbirth. If we are blessed to hear a few cries from him at birth before he passes, then that's a blessing too. Who knows, maybe he will get to take a look or two at us before seeing Jesus face-to-face.

For anyone who has gone through this or is going through this (or something similar), the book Heaven is for Real has been a tremendous encouragement for us in this process. Google it. It will change your outlook on life (and after-life ;-)). I have only read/heard parts of it so far, but Heather has told me about some of the more interesting parts. This book is a must read.

So, here's the big question. How does someone get through something as awful as this? Here's how I am dealing with it. The one-day at a time approach doesn't cut it. On days like this, it is one step at the time. When that is too much, it is one breath at a time. It is important to keep the daily routine going. Complacency is never a good thing-especially now. Get out of the house. Don't suppress the grief. Don't wallow in it either. Deal with it as it comes. Don't feel guilty when you have a good day or week.Hold onto and lean on those you love.  Humbly accept the help and solace of friends and family-even when you don't feel like it.

Our church family, family and friends have been so good to us. It brings tears to my eyes. They make us keenly aware that we are not alone in this trial. They are going through it with us.I remember that; for those of you in this (or a similar) situation remember that. It sure is nice not to be alone in this!!! In writing this, I realize that not everyone who reads this may have these same relationships available, but there is a greater source of help: God.

The brutally honest question to ask in this is why would I turn to the one who caused this to happen for comfort? That is a very good question. The only way that I can explain it is that he's still God, he's still the creator of everything, I still belong to him, and he is my (heavenly) father. Nearly all fathers deeply care about their children. So my sadness is his sadness. He shares in my pain. I don't know why he chose to let this happen to us, but I still need to accept it.This is not to say that there are not very frank discussions going on between him and me about this from time to time. But the neat thing  is that he nearly always replies. Unfortunately, it is more often something that doesn't set too well with me-but it is always the truth. I still find it mind boggling to know that I can have this relationship with the creator of everything and that he has cares for me individually. His vastness doesn't make me feel small and insignificant, rather it makes me feel comforted-like a warm blanket. As I remark in the wonder of all this, my focus shifts from this bleak trial to God. My spirit lifts. This must be how the persecuted Christians in other countries find joy and contentment in spite of their circumstances.

the phone call

Our perinatologist called today and confirmed what we've all suspected all along...Trisomy 13. David's terminal diagnosis. The finality of it all and the tears that followed were the book ends to a day that has felt heavy and sadder than most. Strange that the doctor would call today. Then again, maybe not.

Ironically, we're all terminal, you know. David's life will be lived out in a short time. My prayer is that he would somehow know he's loved--first by God, then by us. It is hard to accept that he will not live a full life with us. Maybe he is the lucky one. He will escape all the pain of this world. I pray something good and beautiful will come from his life. What are the rest of us doing with the gift of life given to each of us, for whatever time we have? Something to ponder...

9 days ago

Last Tuesday (9 days ago), we went back to the perinatologist--the dreaded dark room where all of our continuous bad news is delivered. We prayed long and hard before going in and simply asked God for no more bad news. For the first time in a long time, God answered our prayers. Surprisingly, there was no additional bad news. In fact, all of David's important organs and systems look fine (except, of course for his heart--which still beats strong and steadily with only 2 chambers). His brain looks fine, his measurements are normal, his internal organs look fine, and he has more than doubled in size since early October and is now 9 ounces. He has none of the other problems that they might expect to detect in a baby that appears to have Trisomy 13. I guess we honestly expected to have additional bad news that would be final supporting evidence for Trisomy 13. So even though nothing has changed, no more problems have emerged. This made the doctor conclude that we definitely needed to have the amniocentesis to confirm the suspected diagnosis of Trisomy 13.


I had tried to avoid having an amniocentesis due to the risks of loss and infection, the scary long needle, and simply because of the pressure my OB had been putting on me to have it. I hate being pressured into anything. But the high risk doctor was not pressuring me; he said that it would be beneficial to know with certainty the prognosis prior to childbirth simply because if David had no chromosomal abnormalities and "simply" had a heart defect independent of Trisomy 13, then I would need to give birth in Seattle by C-section. In Seattle, they would be able to do immediate intervention and care for a tiny heart patient like my baby. However, if the amnio confirms Trisomy 13 as we all suspect, I will give birth to David in Missoula and treasure the minutes and hours we have with him, whether he is stillborn or born fighting for life.

So we wait...probably sometime early next week we'll get the results. In my heart, I am not holding out hope; the signs all point to Trisomy 13. But at least we will know with certainty and can close the door on the "what ifs." Instead of counting days, I am joyfully counting the kicks I can't stop writing about. They are my son's way of letting me know he is still fighting...somehow still living on a tiny two-chambered heart that is miraculously beating.

my grateful thought from the eye of the storm...

I just had a moment of gratitude, strangely, after reading a plethora of blogs written by parents who are suffering on their own journeys: parents of Trisomy 13 and 18 babies; babies lost for unknown reasons early through miscarriage; babies lost through stillbirth; babies born severely disabled; grieving mothers who simply long to carry a baby in their womb beyond the first trimester.

I have said many times lately that hoping for one more baby but never having one is better than what we are going through now. But I think I am changing my mind on that. I am truly grateful to be carrying David Samuel Henry, a very active little boy. I can't imagine if I had never felt him move. I look forward to the afternoons and evenings when he is most active. I feel so blessed to have actually made it through the first trimester and still be carrying him, of being pregnant with him.

I've been down the dark road of early miscarriage; sometimes that experience, although extremely devastating, felt more merciful--made more sense. I reasoned that if something was wrong, God knew it and was being merciful to us and the baby. Even knowing we won't be able to keep David on this earth, somehow I am still in awe that he is still with me right now. If I had lost him early in pregnancy, I would have never known that I had a son. Or his mid-morning stretches or afternoon kicks. I can't wait to be with in Heaven, where there will be no fear of saying goodbye.