two juxtaposed thoughts...

I'll start with my more reflective thought and end with one that makes me smile, so as to end on a happy note. If you are reading this now, bear with me as I pour out my struggling, rambling thoughts, which are a living testimony to a life that will pass too quickly and whom I grieve losing even as he bursts forth with life in the womb.

I am concluding that at any given point in time there are two kinds of people in the world. (I realize there are many ways of looking at the world and people, but today I'll focus on this.) There are those who have lived through unspeakable loss and tragedy and are still standing; and those who have only seen life unfold as they dreamed, untouched as yet by sorrow and loss. To suddenly go from the latter group to the former is like skipping blissfully along on a sunny path through a beautiful garden, and suddenly mashing through the glass of an unseen wall, with a million little shards wounding you. You look about at the beauty beyond the broken glass lying at your feet but cannot grasp it; the beauty is out of reach. If you take a step to move out of the brokenness, you only wound your feet on the path more.

You eventually are able to escape the garden of brokenness and move on, because life doesn't stop. You observe pictures of others, family portraits of others in their beautiful gardens, watching more joy and flowers and beautiful children filling their frames, always being added...my frame doesn't reflect all those who should be in my portrait, in my garden. Why God, do you keep taking my babies?

Ever since last Friday, but especially all day long today, I experienced a beautiful gift that cannot be taken from my memory and is forever etched there like a framed photo. David has been kicking me in the upper right side of my tummy, near my ribs. One by one, Jonathan, Rebecca, and then Bryan were able to feel his tiny feet pushing against me. He is here now; he is my gift now; every day he is with me, now kicking me, is a new gift I feel privileged to unwrap each day. I long to kiss his little feet...

So, my beautiful gift, waving back at me with perfectly formed little hands from my ultrasound photo, each segment of each finger so tiny, I marvel at your life. I love you. Please stay one more day. I celebrate your kicks, your life. You are leaving footprints on my heart that will forever remain. You have brought me great, wonderous joy today.

Redefining My Relationship With God...

I am reposting the following blog posting by a mom, Lisa Husmann, whose baby boy Jaxton was also diagnosed with Trisomy 13 and knew her baby would not live. Her blog is http://lisahusmann.wordpress.com. Her words reflect my own struggles, and yet she is just a little further down the road on her journey. I identify with so much of what she says. I decided put this out there as a challenge to anyone who might be struggling to re-define his or her relationship with God as I am currently. Lisa has some honest and wise words to share. You don't have to have a baby with Trisomy 13 to be challenged by what she shares...

 

"Since Jaxton passed away I have had to re-define my relationship with God. I’ll be the first to admit that I have had an easy life. I’ve always been loved, provided for and protected. God and I have always had a pretty good relationship because it has always been going my way or benefiting me in some way. Subsequently it was easy to love him.

When we got the prognosis that Jaxton would die I spent then next few months grieving, I cried, I hurt as deeply as you could imagine. Then I remembered my favored relationship I had with God and then I thought this isn’t really going to happen to me. Somehow it’s wrong or God will heal him and it will all work out fine (just like it always has). I was looking back at all the times God had loved, provided and protected me in the past and thought this was going to be another time like that. Somehow he really wasn’t going to die. We kept waiting for each prenatal or ultrasound appointment to bring good news, but it never came. We always left sadder and more distraught then when we got there, but still thinking the God I KNOW isn’t going to do this TO ME.

When Jaxton was born he never took his first breath and had to immediately be intubated. What felt like just minutes after I finally saw him in the NICU I was being asked questions about what I wanted to do as far as “comfort care”? Josh and I had no plans to just let our little boy slip away with out a fight. So we chose a “heroic care” type plan. But still I was confidently thinking, “God is going to come through. It will all work out fine. He’s gonna live!”

We did start getting positive news about...him breathing on his own, I proudly thought, “God, I knew you would come through for me!”

Even as his heart stopped beating I acknowledged his power and ability to do miracles and gave him all the glory and said “You can still do this! You can save him!”

But now Jaxton is gone.

The God I knew before… the one who Loved me, Provided for me and Protected me has forced me to re-examine and redefine my relationship with him.

In doing so I realized something about myself that not only applied to God but other relationships: If I personally didn’t benefit from a situation was I still going to do it? Was I in love with God only because of the perks I was getting? Was I going to continue to give him my whole heart like I so often claimed I had done if I personally wasn’t getting something from it? If more bad things keep happening, then will I jump ship?

This is a hard pill to swallow when you realize something like this about yourself. What are my motives on a daily basis? Unfortunately, usually they are selfish motives. What does it mean to deny yourself daily and pick up your cross? To me it means that I need to be sold out on God and expanding his Kingdom here on earth and for eternity whether it benefits me or not (but especially if it doesn’t).

I started to read a book my friend Cami gave me called Holding On To Hope. She writes about the book of Job. I realized I could relate to Job on a very small scale. I could relate to feeling privileged by God and having a beneficial type relationship. Job had many things going for him and God provided for him is so many ways. Yet God allows Satan to take away all his children and livestock and servants. Then Job says something wise… (I’ll paraphrase) “Should we only accept good things from the Lord and not the bad?”

So in regards to Jaxton… I’m still devastated, hurt, very sad and a different person than I was before he entered my life. I promised the Lord that I would wholly surrender to him… and that meant to give Jaxton over to him as well. But I couldn’t give him over with a hard heart--it had to be genuine. Although my heart wasn’t 100% genuine (as if any mother’s heart would be) I had an understanding that Jaxton’s purpose on earth was fulfilled and I was at peace with that.

Today I buried my son. It was the last time I was ever going to see his little white casket. I still could not believe he was not with us any more. That he was here and now he’s gone. This made it all so final.

The God I knew before… the one who Loved me, Provided for me and Protected me… is still the same God. It’s just different now. It’s a different love. A deeper love. A comforting love. //  It’s a different way of providing. Providing friends and family to watch Jake. Providing support. Providing physically and emotionally. Providing a beautiful baby for me to love for 14 days. Providing peace that he is in heaven. //  A different Protection. Protecting my heart. Protecting my relationships. Protecting my wholeness. It’s all just so different.

I could go on and on about how God provided for us during this time, But I’ll leave it short and just say HE DID! and still does even today. That’s why this next part is so hard to admit to.

YES, I have a strong faith in God. I have grown to love him and all I’d be lying if I said everything was back to normal. My heart has been a bit hardened when it comes to praying, but especially for healing: Unfortunately, I am in a stage where I tend to roll my eyes when someone asks for a prayer for healing. Hoping they get a good outcome but wondering “Why bother to pray for it, God’s gonna do what ever he wants anyway.” It saddens me that I feel this way, but my wounds are fresh from being vulnerable and getting hurt. I put my whole heart into believing God could and would heal Jaxton. It might take time to trust in the powers that God has and not be hurt or jealous when I hear of a baby who is healed. I’m being honest and I know it’s hard to hear. It’s hard to say. It’s hard to admit. It’s embarrassing. I’m on a new journey trying to understand the God I very much LOVE and TRUST. I look forward to what I learn about him and for him to show me a new side of his love for me.

I am still getting used to this new relationship. The comfortable and cocky relationship I was used to for 29 years is gone. Thinking “everything will work out” and “it will be fine” is long gone… Maybe that’s good though. Comfort leads to complacency and what good is just being comfortable? World changers aren’t complacent they are uncomfortable. I am excited to see what the Lord has in store for me in the future!  :)   So once again I will quote Job, “Should we only accept good things from the Lord and not the bad?” I have already seen the way I have changed as a person, the way the world has changed because of my son. It was bad for me and my family to lose him but good for the world that he was here. I look forward to seeing him again and that makes me smile. I am thankful for God letting us know that it won’t end at just the 14 days but I’ll get to spend eternity with Jaxton and Jesus!!! What a wonderful thought!"

The Fog

Just a mile and a half from our home are the Bitterroot Mountains. As autumn covers the earth, the rich evergreens are mixed with the yellowing Tamarack trees, forming a puzzle-like pattern on the mountains. On clear mornings as I sip my morning tea at my kitchen table, I enjoy watching low-lying clouds lift into the deep blue sky just above the mountains.

Not so today. When I awoke, I could see that the entire valley was immersed in thick fog. Visibility was no further than 300 yards. It was a heavy, gray fog...as heavy as my heart when I think of death separating me from my precious baby in the near future. As I sat at my computer this morning, looking out the window, I thought about how I know with certainty that the mountains are just beyond the fog. I felt hemmed in, edgy, longing for the fog to lift and let in sunshine and a clear view of the mountains on the other side.

What a picture of life and faith. I know that once David leaves this life, he will be just beyond the veil of fog that separates us from heaven and eternity. Death is that foggy veil. I'm thankful that Jesus triumphed over death on the cross, and that one day, the fog will be gone forever...

A fondness for family

Bryan here. I think that we have transitioned from begin in a state of sheer horror at what is happening to a state of profound sadness. The unending grief that binds these two emotions has become tinged with hope and an appreciation for what we do have. As we continue to experience the death of our child "in slow motion", we become increasingly aware of the value of life. With each passing day, the baby's kicks become a little more noticeable as Heather's belly grows. While we are keenly aware that one day in the not too distant future the kicks will stop, we do experience joy that couples the sadness. We think about the reality of eternity that awaits us all. The brevity of our lives on Earth does not measure up to even be a "blink" in our overall existence. God has promised to make our baby perfect. In 1 Corinthians 13, the love chapter, it states "when perfection comes the imperfect disappears". Since absolutely nobody is perfect here on Earth, then this is a reference for those taken to heaven following death. That sounds pretty darn good to me! The moment David dies, whether in Heather's womb, during child birth or just after, he will awake in heaven with a perfect body, mind and soul. This "hope" that we possess sure lessens the sting of this situation.

As can be imagined, it has brought our family even closer together. The little day-to-day irritants really don't matter anymore and actually seem silly. Our relationship (Heather and I) has become much tighter. The relationship with the kids has deepened considerably as well. They are truly a joy and a source of strength.

I don't know why God allowed for this to happen to us, or to anyone for that matter. I'm sure that I never will completely know. Sometimes, there are no answers-or any answers that we can comprehend. Yes this angers me at times, but I am just a man. I think of my pet dog/wolf. When I leave for work in the morning, he has no idea why I am leaving or what I am doing. He does not have the mental capabilities to understand such simple things. So it is with me. What do I know. My job is to follow, obey and to trust God. His track record isn't too bad, you know. As long as there is chocolate in Heaven, I will be ok! :-)

our baby

We are naming our baby David Samuel. David--because his big brother Jonathan always wanted a brother named David. In Heaven, we hope they will experience a heavenly version of the kind of bond that King David and his closest friend Jonathan shared on earth. His middle name is Samuel because we know the Lord will be taking him Home either during pregnancy or just after birth. Therefore we are giving him to the Lord, knowing he will serve our King, just as the prophet Samuel ministered in the temple after his mother Hannah dedicated him to the Lord.

David has a constellation of symptoms consistent with Trisomy 13, the most notable of which is a 2-chambered heart. Babies with Trisomy 13 rarely make it to their first birthday, and most die sometime during the last trimester of pregnancy. With David's severe heart condition, we know what we are facing. Each day with him is a gift. I will have the privilege of carrying him until--in the blink of an eye--he will be taken home to Heaven. We are heartbroken that we will never know him in this life the way we know our other children. I have wept buckets of tears over all the unlived moments we will never share with him. I pray that the moment he passes into the arms of Jesus he will also be embraced and held by my Granna until I one day go home as well. Maybe she can keep singing him the lullabies where Rebecca and I left off...

Singing Jesus Loves Me and others sacred things

Tonight at bedtime, Rebecca and I sang "Jesus Loves Me" to David. I huddled over my belly in the dark as best I could, while Rebecca put her face next to my protruding stomach as we sang. Actually, the sweetest part of all was when Rebecca changed the words as we sang to: "Yes, Jesus loves David; yes, Jesus loves David; yes, Jesus loves David; the Bible tells me so." Leave it to Rebecca to think of something so sweet as that.

I must have sung that song a thousand times or more to Rebecca and Jonathan. Between now and when the Lord takes our precious son to heaven, I plan on singing every song and lullaby I can think of to the baby I will birth but can't keep...with the help of the daughter I wasn't privileged to birth or sing lullabies to until she was a year old. The irony is staggering. To think that of my three children, I've only had the privilege of being a Mommy to one of my children from birth to the age of one. (We adopted Rebecca at 11 1/2 months and have been blessed to have her since then.) Sigh. I have no words...only gratitude for each day during pregnancy that we have with David. A lifetime of love to squeeze into only months...if not for the promise of Heaven--with our David--we would have only despair. Hold your babies tight and cover them with kisses for the gift of today.

One month ago tomorrow...

One month ago tomorrow, we received news that no parent ever wants to hear. Something was wrong with our baby. The baby I had always longed for and ever gave up on having. Only 3 days before, we had celebrated that I had made it past the first trimester uneventfully. Only three days later our hope and joy quickly crumbled. The ultrasound tech immediately detected a very high measurement of fluid at the back of the baby's neck in a test called a Nuchal Translucency (NT) scan. All babies have some fluid, but many babies with Down Syndrome or other chromosomal abnormalities have an increased amount. Statistically, it is much more likely to have a baby with Down Syndrome if you have an abnormal result.

Just days before, in preparation for what they would be looking at on ultrasound, I had researched images on the Internet. I knew what a healthy baby looked like. I also memorized the dark gap of fluid in ultrasound photos of babies who had problems. It was surreal. Seeing your unborn child pop up on the large screen on the wall is breathtaking. Seeing the dark gap of fluid come into view behind MY baby's neck left me speechless. This can't be right. I'm not a professional. Surely I'm not seeing things right. Stay calm. I always rush to a worst-case scenario. Breathe. The ultrasound tech leans forward and gets a little less chatty. I gulp. She presses the wand harder and harder into my belly, trying to get better views of the baby. After more and more of this, she takes some notes and says, "I'll be back in just a minute."

"Something's not right," I told Bryan. After nearly 10 agonizing minutes of the tension building, the tech returned and sat down.

"Is everything all right?" I barely mustered enough strength to ask.

"Well, there are a few things that are concerning," she went on to say. She noted that the NT measurement was 8 mm. Anything beyond 2.5 mm puts the baby at increased risk of possibly having one of the chromosomal abnormalities mentioned above. Eight mm is a huge red flag. So huge, they didn't even both doing the blood test that is normally taken in conjunction with the ultrasound.  The tech told us the doctor was in a satellite office and wanted to meet with us the following day to go over the results with us personally. Gulp.

They left us in the room for as long as we needed. We collapsed into each other's arms and wept.


The next day, as the doctor spelled out in more detail the bad news from the previous day, in the middle of it all came a beautiful moment. All the while as the doctor talked, our baby kept squirming around on the screen. Suddenly, our baby started sucking his little thumb. That was our golden moment in a very dark pit. I am holding onto the little things now...