Edwards Syndrome

Emotions… So many layers

/ karenstenberg / Leave a comment

 

Spring is coming. I can feel it. There’s an anticipation deep in my bones.

I can see spring is coming by the way people start driving. The way kids suddenly have more fidgety energy, and declare they NEED to get out. The way teenage boys and girls playfully yell at each other from their cars or across the street. And little purple and white flowers have started peeking out from the ground.

I’m looking forward to spring. I’m looking forward to taking the kids to the park, going on long walks, going to the zoo. Watching the boys play baseball. I’m looking forward to opening the windows and feeling the breeze through the house.

There is a busyness that comes with this season. I love to be busy. I love to go out and do “all the things”. I love people, activities and the sunshine. Daniel often has to remind me to slow down.

Don’t get me wrong I need down time, and I love cuddling up on the couch with a cup of coffee for a quiet afternoon. I love sitting in the back yard with a good book or just watching the kids and dog run freely, while they squeal…eh… screech around the yard.

For a while here I have craved the distraction of spring.

We watched the Pixar movie ‘Inside Out’ the other day. We hadn’t seen it in a while. But man… that movie… all the adults were crying!! The next day Daniel and I were talking about the movie and how it really hits a lot of deep issues regarding our feelings, and how we deal with them. As I was introspectively thinking about my own feelings, I looked over at Daniel and said “Man… I think I just like to have ‘Joy’ running my console all the time…” He just looked back at me, laughed and nodded in agreement.

Nothing makes you realize you can’t have ‘Joy’ running the console all the time like experiencing loss. Experiencing loss has made me feel many layers of emotions. Sometimes these layers of emotions have made it incredibly hard to pick out how I’m actually doing, or what I’m actually feeling.

I’ve had so many conversations with friends in the past year about how important it is to feel your emotions and work through them. Taking the time to do this is a good thing! We have an emotional God. We are made in his image. We are going to experience the full range of emotions. He doesn’t expect us to be ‘happy’ all the time. That’s just not how He made us!

And here I am facing my own advice. Isn’t that just how it works!?! I really just want to stuff it down, burry it and ignore it…but I know I need let all the painful, and complicated emotions roll in and wash over me.

The bright sun and warm winds of Spring are carrying me away from the Winter of loss.

Honestly it’s a really good thing for me that this all happened in the winter. There is so much less distraction, especially in January and February. It’s given me more time to face the rolling emptions.  More time to sit with God. More time to talk with family and friends. More time to talk with the kids. More time to talk with my husband. More time to face my thoughts.

The rain, the sleet and gray days of winter have reflected my mood. It’s a strange feeling, to look out your window and appreciate the weather and its reflection of your grief, the tears in the rain, like the tears in my heart.

As much as I love to encourage and be upbeat. I can’t have ‘joy’ running the ship all the time. I have experienced deep loss, and I need to feel that. Later in time when I am sitting with people in their loss, I want to remember how my heart felt. I need to remember the physical pain. The pit in my stomach and the looming fear of the unknown. I need to let God use all these things to make me look more like Jesus. To bring me close to Him. And also, so I can minister to others who are experiencing deep hurt. So that I can remember the pain and remember the healing on the other side. And allow the time it takes, for me and for others, to heal.

The time table of healing isn’t something we can hurry up and ‘get through’. As they say, “you can’t rush art!” And there is an art to grieving. It leaves a mark on your soul. It leaves a different reflection for each of us. It looks different for every person and experience. Our own expression, our own fingerprint, of loss.

Dealing with these rolling emotions during the cold months has allowed me more time to sit and process.

It’s a dance, to sit in the moments and feel the hurt, pain and sorrow, and then know when it needs to be time to get up and push through. It’s not a cut and dry process. It’s a back and forth  dance.

In the movie Inside Out the characters learn the importance of the range of emotions, and that experiences are often colored with multiple emotions. It’s not unusual to experience joy and sorrow simultaneously. Often our memories of different times bring up a range of feelings.

As things start to feel easier again, I’m learning to not feel guilty on the days when I feel joy and want to tackle the world. And I’m learning to have grace for myself on the days where the layers of feelings vary, and are complicated.

I don’t have to be happy all the time!! Sigh of relief… There is freedom in letting go.

And you know, if I feel like dancing in my kitchen, I am going to kick aside those thoughts of “you shouldn’t be feeling happy yet”, and I am going to dance in my kitchen!

I am looking forward to the warmth of spring. I am having more good days. More joy coming out again.

In a lot of ways sitting in the warmth of the sun reminds me of basking in the warmth of God’s love. I think I’ve felt this way about it since I was a child. And in this season as the weather changes there is a new depth to this feeling.

I am thankful for the different creative ways God uses to wrap His arms around us.

 

Psalm 31:7-8
7 I will rejoice and be glad in your steadfast love,
because you have seen my affliction;
you have known the distress of my soul,
8 and you have not delivered me into the hand of the enemy;
you have set my feet in a broad place.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Letter to Ava

/ karenstenberg / Leave a comment

 

I shared this letter at Ava’s memorial. Now I’m sharing it here with you.

 

Dear Ava,

My Ava Hope. My first little girl.

You were only with me for 20 weeks, or in other words, 4 and a half months. But you impacted our lives on such a deep level. Honestly it’s still hard to understand the depth. But we all feel the absence of your presence and we miss you.

My list of experiences with you are much too short. But I will still treasure them. I treasure the times I saw you flipping and wiggling all around in the ultrasounds. I’ll treasure feeling you move. I craved pop tarts and halal guys, very weird… but those things will always remind me of you. I’ll treasure all the trips I took with you, trips to the zoo, New York city, Niagara falls, and just being pregnant with you through the regular routine’s of our life. We even flew out to Washington with your brother Elijah. You were right there with me for my first big speaking engagement. It’s fitting that I was speaking on encouraging women in the Lord. My prayer is that your story will bring encouragement and hope to many women throughout my life.

There are so many things that I hoped to experience with you. I wish we had been able to gaze into each others eyes and meet face to face for the first time.

I wish that you would have flooded our very blue world with pink and purple. Even before we found out you were a girl we were teasing your brothers about the possibility of all the girl toys that would invade their playroom and the girl shows that would be on the tv. They would act so upset! But the truth is they were all wishing it would be true. You see they had prayed for you dear Ava, they had prayed for a baby sister. They were excited about you the second they found out mommy was expecting another baby.

I wish that you would have given me sleepless nights, times for priceless moments with just me and you, quiet moments with me nursing you and rocking you while you fall back to sleep.

I wish that I could have bathed and dressed you. I wish that I could have hugged you and wiped away your tears.

I wish that I could have fought with you over all of the things…

I wish that I could have watched the wonder in your eyes as you discovered your world.

I wish that I could have known your personality and the way you laugh.

I wish that I could have known the fear and pride that parents talk about when they watch their little girl turn into a woman.

I wish that I could have watched your daddy with His little girl. I know you would have brought out a new tender side of him.

I wish that I could have watched him walk you down the aisle someday…

I wish that I could have told you about Jesus and how much He loves you. But that is something you now understand better than your mommy. And that makes me smile and again brings me hope.

There are a thousand things that I long to have experienced with you, and hoped for you.

It’s funny because I will always picture what things would have been like with you in a perfect world. Because from the very beginning things were imperfect.

I will always picture you whole and perfect here. And I will always romanticize what our relationship would have looked like and how you would have fit into our family and who you would have grown up to be.

I know things would never have been as perfect as I picture them.

But in so many ways imagining the perfect relationship is so fitting for us. Because someday when I meet you there on the other side of death, our relationship will be perfect. It will be more perfect than any romanticized version of us I could have imagined. With Jesus, with the Lord where there is no more sin. No more darkness. We will be both be perfect and I will enjoy getting to know you and being with you forever.

Ava Hope-   I love your name little girl. Ava means bird, and it also means life.

Living Hope-   Your name is a reminder of the living hope we have because of Jesus. Just thinking about your name brings me comfort.

There is sorrow in this life, but with the Lord there is a greater hope little one. And I am clinging to that.

I am clinging to the foundational truth of God’s word and the hope that it gives me.

I love you Ava Hope. And I will miss you until we meet again someday.

 

Your Mommy

 

 

 

 

 

 

Weak

/ karenstenberg / 1 Comment

Weak…

This is not a word that we like to use when describing ourselves. It’s not a word that lifts me up and brings me encouragement. It’s not a word that propels me forward through the day. In fact, if you really reach down to the bottom of how I would prefer to associate that word, I would rather use it to label other things, situations or sometimes even people.

Using the word weak to describe something outside myself, well, it can give me a false sense of feeling stronger in the face of my own weakness.

Weak…  I’ve felt weak a lot in the past months. I mean don’t get me wrong I’ve been aware of so many of my struggles and weaknesses forever. But the past months have just taken a big fat, squeaky, bright highlighter to them. The glare is blinding. They cannot be ignored.

When I found out about having our 6thbaby I felt weak. How am I going to be enough for all these children? How am I going to do this?

When I found out about Ava’s diagnosis. After the shock abated a little bit, and the reality of the situation started to settle in, I wanted nothing more than to get off this train. Get back to where I planned on having a healthy baby in the spring. I wanted to stop sitting in the unknowns.

“Can I go back in time? Can I just start this whole thing over and hope for a different outcome?”

Of course, the answer to this is no.

This is my precious baby girl. This is where I am. With her. Our weaknesses exposed together. I can do nothing on my own to fix this.

I felt so weak.

I felt weak as fear would creep in at unexpected times during the day and then also at expected times like when I went to the doctor’s appointments.

I felt weak in the face of one of my biggest fears…losing a baby, a child. And in turn preparing and attending Ava’s memorial.

I felt weak when I didn’t want to get out of bed some mornings, some afternoons….some days.

I felt weak at the thought of having to go through my normal routines, when I felt like my world had stopped. I felt weak when I needed my world to stop…at least for a while.

The reality of facing my weaknesses at such a raw and real level has been hard… gut wrenchingly hard…

and Beautiful

Here in my utter weakness and brokenness there is Good News. Here, there is gospel that shines bright and lifts me up.

As the simple, elementary, yet oh so true, children’s song ‘Jesus loves me’ says:

“When I am weak, He is strong.”

I am weak, but my God is Strong!

When I felt fear and inadequacy at having a 6thchild. When I knew I couldn’t be enough, I was reminded that God is enough. He is strong. And He will give me what I need for the days ahead. And often this doesn’t mean it all falls on me. I have an amazing husband who parents alongside me. And other people in our family’s life that also love on my children, encourage me as a mom and a wife.

When I struggled with fear and wanting to give up after Ava’s diagnosis, God reminded me that she is His child first and foremost. And he has entrusted me to carry and take care of her. And through that truth He gave me peace, a peace that doesn’t make sense.

And He gave me joy. Joy that I do get to carry her right now. And joy in being reminded that He carries me. It’s hard to convey how it feels to be ‘carried’ by the Lord in a place of such deep hardship. All I can say about that right now is, it is true.

As I expressed in my last post(Ava Hope), God was with me every step of my terrifying and hard trip to the doctor’s office and hospital. He was with me through her delivery and goodbye.

When faced with the reality of losing a baby, the phrase “hurts like hell” is accurate. However, with the Lord I am not filled with suffocating despair.

I grieve with hope.

In facing one of my biggest fears God has never been absent. Some days I didn’t do much but grieve in my bed. And that’s ok, it was healthy and needed. I may still have some of those days. But God has given me new strength and mercies each morning, to face the day in the capacity that was needed. Some days the pain wasn’t so much, and some days it felt like more than I could bare. But God gave me what I needed for each of them. This is still ongoing and true.

Now let me add a “Life is real in the Stenberg house” story here:

I finally had enough courage to sit down and rip off whatever band aid I had plastered on. I was ready to write Ava a letter. Obviously she is gone, but I needed it.

So here I am, I’m writing, I’m crying,… I look like a mess. Facing this hurts in a healthy way, it feels good to do this. In the middle of writing the letter, I hear a knock on the door. It’s an older man and a young guy. I peek out the window and see their truck. These guys have been working on getting our furnace fixed. Not too long ago they ordered a part and told us it wouldn’t be showing up for a couple more weeks….It came early.

I open the door say hello, and let them in. Those poor guys. They couldn’t have been more uncomfortable after taking a look at my face. They sheepishly explained that the part to the furnace came in faster than expected and they were here to replace it. “We will be done quickly” they said.  And they were, they ducked out of my house so fast after they were done! I thought about giving them a simple explanation, but really, I couldn’t come up with anything that would make things less awkward! I am just left to laugh about it now.

OK back to the letter and memorial.

While getting ready for the memorial we had so much help and support. We are so thankful for all the people that made a very hard day, as easy as it could be. It takes a village and ours loved on us that day and the days surrounding. It was a good day and good day in our process of healing.

Daniel sang and played a special song at the memorial and he also gave the message. I shared the letter I wrote to Ava.

We did not know if we were going to be able to make it through what we had planned. In fact, we had a backup plan in the event of an emotional meltdown! I didn’t know how I was going to get up there and share my letter without falling apart. I felt so very weak and afraid of facing that day.

But when I am weak, He is strong.

God’s peace and strength carried us up there, God’s peace and strength transcended all the difficulties, fears and the tears that threatened to take over. Because there were tears, but they didn’t take over. God’s peace and strength carried us through the service through the day.

I wish I could explain to you the feeling of being upheld by God that day, sharing about my girl and the hope we have in the midst of sorrow because of our Lord and Savior. But there are really no words to convey what it feels like when God is carrying you.

God’s message of His love shined that day.

And God’s peace and strength are still carrying us through.

I am no “super Christian”.

I have no “super faith”.

This process has been so hard and messy.

But God is rich in His mercy, grace and provision for all of His children that have faith in Jesus.

This is good news for all of us! Because He desires all of us to be His children.

He desires to carry all of us, and to be a stronghold in times of hardship, hurt and fear.

Whatever the situation now or to come. Take heart because God is enough.

 When we are weak, He is Strong.

 

2 Corinthians 12:9-10
9 And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. 10 Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.
 

 

Hope in the midst of Sorrow- News about our 6th Child

/ karenstenberg / 15 Comments

 

I am writing to share some hard and heavy news we received a couple of weeks ago now. It’s taken me a bit to even think about sitting down and writing this. Because my heart is grieving and sometimes it’s hard to get through even the simple daily tasks. 

 

Most of you know we are expecting our 6th child in May. And while it took some processing, “6 kids!!” We were excited. And as I entered the second trimester and started to feel better. That excitement just kept growing. 

 

But just as our excitement was growing, the wind has been knocked out of our sails. 

 

I went in some weeks ago now for my first ultra sound and blood test. And the results were that my little one has Trisomy 18. 

 

I had never heard of Trisomy 18 until now. Trisomy 18 is a genetic mutation, a chromosome abnormality, where a person has 3 chromosome 18s instead of only the two you’re supposed to have. And that slight imbalance, that one extra chromosome, affects almost everything with the baby’s development. It causes extreme birth defects, including, but not limited to, key organs, like the brain, heart and kidneys. 

 

It is very fatal. 

 

95% of babies that are born with this pass away within the 1styear of life. And most babies do not even make it full term, passing away in utero. A lot of babies that are conceived with this chromosome abnormality are often miscarried in the first trimester.

 

We’ve been informed it’s totally random. It’s not something that is hereditary. There is no one to blame. I didn’t eat bad romaine lettuce and Daniel didn’t eat too much raw cookie dough. Its super unlikely to have this happen.

 

It’s like winning the bad lottery. 

 

We hoped that this would be a mistake, a false positive. But when the blood test was compared to the ultrasound findings the diagnosis was confirmed. This past week we went in for a second ultrasound, and the doctor said they could see the cysts forming in the brain of our little baby.

 

Receiving the news that unless God starts knitting differently in my womb we are going to have to say goodbye to this little one has been heartbreaking. This is never a road I anticipated walking. The unknowns and the questions, mixed with the reality of the diagnosis can make the walk overwhelming, scary and debilitating.

 

How do you prepare for a birth and a funeral at the same time?

 

News like this clouds most thoughts through the day. And some moments I’m grieving, and some moments I am filled with God’s peace, and some moments I have no choice but to laugh at my boys and their silliness or funny comments, and then I’m back to crying. 

 

I am grieving, but I am not grieving without hope. 

 

Weather the Lord decides to make this little one whole and healed in heaven or decides to heal this one for life here on earth, I know with certainty that this little one is in the Lords hands. And for that matter so am I and my family. 

 

Processing through this has just highlighted so much to me the brokenness of the world we live in. This is not punishment for Daniel and I or this baby. This is not “fair” or how things are supposed to be. 

 

This happened because you and I live in a world that is broken. Broken by sin.

 

Ever since sin entered the world at the time of the fall with Adam and Eve, the world has had a sin condition which has resulted in separation from God, and things falling apart. God created the world, He said it was good, and then we got involved and corrupted the whole thing with our sin.

 

Sin is trisomy 18. Sin corrupts this world with defects, just as Trisomy 18 is corrupting my beautiful little baby with defects.

 

And so, this world is broken and filled with hurt and I am reeling from the consequences of that right now. 

 

However, as Christmas approaches and we think of this season that is, or should be, filled with joy, I can’t help but be reminded of why we are filled with joy. It’s not the food, or the presents or even spending time with family and friends. All of that is wonderful and joyful. But the real reason we can have joy in this season is because Christ came. 

 

Christ came and walked the hard road to the cross and took our sin, shame and brokenness so that we can have forgiveness and reconciliation in Christ. So that He can restore and make things new. 

 

Christ came to make things right, Christ came to restore our relationship with Him and the Heavenly Father. Christ came to heal our brokenness and hurts, and to make us whole. Christ came so that we don’t have to bear the weight of our burdens and sin. Christ came so that some day we will live with Him, where there is no more death and no more sorrow, no more trisomy 18, and He will wipe away the tears from our eyes. And things will be as they should be. 

 

Christ came and walked the hard road to the cross, so that I can walk this hard road now with hope and His peace. 

 

Because of the gospel I can praise the Lord in my grief. Because of the gospel I can say that God is good. Because of the gospel I have hope and assurance in my sorrow. Because of the gospel I can have peace in the storm. 

 

John 14
 
14 “Let not your hearts be troubled. Believe in God; believe also in me. 2 In my Father’s house are many rooms. If it were not so, would I have told you that I go to prepare a place for you? 3 And if I go and prepare a place for you, I will come again and will take you to myself, that where I am you may be also. 4 And you know the way to where I am going.” 5 Thomas said to him, “Lord, we do not know where you are going. How can we know the way?” 6 Jesus said to him, “I am the way, and the truth, and the life. No one comes to the Father except through me. 7 If you had known me, you would have known my Father also. From now on you do know him and have seen him.”

 

We have shared with the kids about the baby and the situation. They are sad. Silas’s response to the news “But Mommy, I wanted to play with this baby!” Me too Silas, me too.  But they are doing well. And looking forward to Christmas. 

 

I will try to be open about this hard journey we are walking right now. I’m not sure how long or short it will be. 

 

When I feel like it and when I don’t feel like it, God is right here with me. 

 

We covet your prayers through this time. And are thankful for all your encouragement.