Blankets

A few weeks before Nathaniel's anniversary, my head and heart were overwhelmed with thoughts of Nathaniel, the anniversary of his birth and death and the memories of our short journey with him. My everyday thoughts felt clouded. It was difficult for me to concentrate and my mind was restless. Some of my thoughts at the fore front were how we were going to honor Nathaniel's memory on July 8th. How do we somehow show Nathaniel the love we have for him in one day. An ordinary day for the rest of the world. A work day for Mel. A day that I still need to get three meals on the table, do laundry, take care of the kids, try not to lose my patience and yell, mourn the loss of my third child and still celebrate his short life.
An idea came to me. I would make blankets. It would keep me "busy" and my thoughts occupied on something positive in the weeks before Nathaniel's anniversary. I called Annette Klein, our prenatal hospice coordinator at United Hospital and shared my idea with her. I asked her if there was a need for blankets. Something like what we received when Nathaniel was born, a preemie size, soft minky fleece. She suggested small, preemie size blankets for the NICU babies. She told me that what I was doing was an incredible gift for the moms and dads who would most likely take their babies home to parent. Something I never got to do. I knew in my heart that although it was a small gesture, it was what I wanted to do for my baby who was only wrapped in his small blanket for a few hours.
Here are the finished blankets. The minky fleece was a little hard to work with for this novice sewer, but I'm happy with how they turned out.

I didn't get them all finished by July 8th which was my plan, but it was fine. I actually worked on a few of them on Nathaniel's day. The day turned out to be pretty good. I had a good day with the kids. We made a stepping stone for Nathaniel. I baked blueberry muffins with some of the berries from the orchard. I made homemade pizzas for dinner. We lit a candle for Nathaniel (something we'll do every year) and then the boys and I went to Toy Story 3. Mel was at class all day and then had to study, but we were able to connect in the evening and talk. It was a good day.

Two years

Nathaniel,
You've been on my mind a lot these past couple weeks, and especially today, the anniversary of your birth. I wish I could approach today and focus only on the love I have for you. But because of that enormous love, my heart is heavy with longing for you. I miss you. I want to see your face. I want to hold you and breathe you in. I want to feel the weight of your body in my arms. I want you here. I love you sweet boy.

The perfect ornament

Every year we buy the boys ornaments for the Christmas tree. I also buy an ornament for Nathaniel, but choosing the right one that envelopes all my love and longing for him isn't always easy. I found the perfect one this year. It's a little boy angel sleeping in front of a candle that glows when you put a Christmas tree light up through the bottom. On the back it says, "Sleep in heavenly peace". It's a beautiful reminder to me that Nathaniel is in heavenly peace. He's perfect. He's whole and he's enjoying God's wonderful splendor.

It was a good day

Nathaniel's birthday was a good day. I'd been anxious about it for a few weeks and I didn't really know how I'd be emotionally on the actual day. Part of my anxiety came from choosing just the right way to honor him. I wanted to do something special that day in his memory. Originally Mel and I talked about planting a tree, but since July isn't a good time to plant and we were going to be gone half the month, we decided we'd save the tree planting for the fall. Instead we decided to purchase and donate some toys to our church nursery in Nathaniel's memory. So we spent part of the day at Toys R Us which surprisingly wasn't stressful (with two kids) and it wasn't sad. We were shopping with Nathaniel in mind but we knew these toys would be used by other kids and it truly felt okay in our hearts.

Later in the afternoon Kyle and I picked up some helium balloons. Kyle randomly chose the colors from the bins and placed them on the counter. Red, orange, yellow, green, blue and purple. I don't think it was a coincidence. We brought them home and we wrote messages to Nathaniel. We tied our messages to the balloons and released them into the sky.

An hour or so later both Jacob and Kyle wanted to write another note to Nathaniel so we had a second balloon release. The boys wrote such sweet things to their baby brother.
"Nathaniel,
Always gentle and kind. I hope you are having a good time playing with Grace and your other new friends in heaven. I miss you and love you. I will see you again one day.
Love,
Your big brother Jacob"

"Nathaniel,
I love you and miss you.
Love,
Kyle"

It's your birthday, sweet baby

We knew you for six months, 186 days to be exact. From the day we learned you were growing inside me until the day you were born. In that 186 days you changed our lives forever. We only new you for six months and held you for a few short hours, but time doesn't determine the amount of love we feel. You are a part of us, and the depth of our love for you is immeasurable.
Our hearts will forever hold an emptiness that cannot be filled. The longing to see you and hold you will always pierce our hearts. We'll always wonder what life would be like if you'd survived. If you were still here with us.

Our comfort comes in knowing that you are rejoicing with our Heavenly Father. The day you were born, He called you by name. The name He chose for you and put in our hearts. He gently spoke, "Nathaniel John" as He called you home. You didn't open your eyes here on earth, but I believe when He called your name you opened your eyes to Him and He made you whole. I picture the angels singing sweetly to you and praising our King.

Although our hearts will always ache for you, we will see you again one day. We hold onto this hope. We love you Nathaniel and remember you especially today, your birthday.

A year ago

A year ago today I walked into my OB clinic for my routine 20 week ultrasound. I sat in the waiting room with my friend Cari because Mel was at Air Assault school. I remember exactly what I was feeling as I sat there and waited. I was excited to see my baby and I thought the highlight of this appointment would be finding out if it was a boy or a girl.
When I was called back for my ultrasound things started out very normal, but quickly changed. The technician stopped talking after only pointing out the top of the baby's head. She moved around and looked at other parts of the body, but I couldn't make out what she was looking at. And then she left the room. I turned to Cari and said, "I feel like something is wrong." I'm sure Cari thought the same thing but she reassured me that everything was okay. An OB walked in and introduced herself and then said that something was wrong with the baby. She wanted to refer me to a perinatal specialist. I asked her what was wrong. (In my mind I was thinking my baby was horribly disfigured because I wasn't able to see any discernible body parts on the ultrasound. This was partly due to the technician not knowing how to react and not being able to say anything to me.) The OB said it looked like the baby possibly had a form of dwarfism or a chromosome abnormality. She was sorry. And just like that the dreams we had for our family were crushed. Suddenly we were walking down a completely different road than the one we were on just ten minutes prior.
I can remember every detail like it was yesterday. I remember what I was wearing, what the weather was like. I remember going to Jacob's track practice that evening trying to fight back tears and avoiding the other parents. I remember having to tell Mel on the phone, but not wanting to worry him. I remember laying in bed that night feeling my baby kick and not wanting him to because it was a constant reminder that something was wrong with him. The positive about remembering today? The silver lining? I don't think there is any. This was probably the most heart wrenching, confusing day of our journey with Nathaniel. Looking back though, as hopeless and desperate as we felt, God was in control. This wasn't a surprise to Him. He knew Nathaniel long before we did and He knew his condition long before the doctors diagnosed him. Some days are still very difficult and God knows this. He's still here wiping our tears and holding us when we need it. And He always will be.

Grief

Grief is such a strange thing. Sometimes emotions can be all over the place. I'll find myself going along feeling good and then the oddest thing can bring my thoughts to Nathaniel. Sometimes thse thoughts are of gratitude and thankfulness to be blessed by Nathaniel and other times it's questions of "why" and "what if." Maybe part of it is the time of year. I was carrying Nathaniel at this time last year. I would have been about eight weeks pregnant, blissfully unaware that the baby growing inside me wouldn't survive. That even if every other part of his body was healthy, his frame would not allow him to live. I struggle with this thought often. He wasn't sick. His heart wasn't failing. He would have had thoughts and a personality and we didn't get to see it. When he was born he never opened his eyes. He never cried. He never moved his body. I know if he had opened his eyes or cried it would have been more painful to see him go, but I feel cheated that we didn't have that. He was so active inside of me. His kicks and movements were gentle because of the size of his arms and legs, but they were frequent. The morning before his birth he was very active. Every ultrasound showed him moving his arms and legs and wiggling around. He was happy. He was alive. What I wouldn't give to go back in time and have those moments again.

Yesterday Jacob asked me where Nathaniel is buried. This is the first time he's asked since right after Nathaniel's birth. I decided it was time to explain cremation to him. I reminded him that when a person dies, their soul goes to heaven and their body stays here on earth. I explained that some people are buried in the ground and that others are cremated. I told him that cremation is a process that changes the body to small particles or dust and that we can keep it close to us in a small box or urn. I told him that Nathaniel was cremated and showed him his box. Jacob took the box with both hands and held it close to his body. He ran his fingers over Nathaniel's name and birth date. (I'll cherish that moment.) I told him that I was sorry I didn't tell him sooner, but that I was afraid it would be confusing to him. He said it wasn't confusing at all. He gently put Nathaniel's box back on the dresser and gave me a hug. I'm so thankful he understands and I didn't scare him with my explanation. I really worried about that.

His plan

God knew long before we ever did that Nathaniel would have Achondrogenesis and He was at work preparing our hearts long before we even realized what He was doing. It started about four years ago. Mel and I had a conversation about what we would do if we were ever faced with carrying a baby that we knew would die or have a condition that would leave them severely impaired physically or mentally after they were born. We weren't even pregnant at the time and had no reason to have this conversation other than we knew a couple who was faced with this situation. We both agreed that if it happened to us, we'd carry the baby to term (or as long as we could) because it was God's choice to decide the outcome or our baby's life, not ours. We obviously had no idea then that we'd be faced with this choice years later.

Last January my women's group was doing a study about God's purpose for our lives and the chapter we were reading was about surrendering to God. The author wrote that as we surrender to God, He will prepare and reveal the plan he has for our lives. I needed to and was ready to surrender everything to God- my strongholds, my marriage, my finances, my weaknesses. I felt God speaking to my heart asking, "Everything? Do you really mean everything? Do you surrender your children?" I don't believe God means surrender as in sacrifice, but rather to let Him be the guide in every part of our lives. To let go of the reigns and let Him take control. In the back of my mind I thought about what I would do if something happened to one of my boys. What if one of them had a serious illness or had a bad accident. How would I handle it? What would this do to my faith? Would I get angry at God and turn away from Him or would I surrender the situation or burden to Him? I initially reflected on this thought but as time passed, I soon forgot about this question God placed on my heart. It wasn't until a few days after Nathaniel's diagnosis that I remembered it. It was clear that I needed to surrender Nathaniel to His Maker, the one who created Him. The one who could heal him. The one who would see us through this. I strongly feel that my purpose and God's plan for my life while I was carrying Nathaniel was to share my story. I usually struggle with sharing my faith and I'm not good with expressing myself but I feel that being open and honest about our journey and sharing what God was doing in our lives was what He wanted. I know that Nathaniel's life had purpose. God didn't cause Nathaniel to have this condition, but he used his short life to touch others. Maybe people who never prayed before prayed for his healing. Maybe sharing our faith has made others come to view their faith in a different way. We'll never know all the ways God used Nathaniel's life for His glory. That's part of surrendering. We don't always know God's plan and we don't always understand it, but we have to trust it.

There isn't a day that goes by that I don't think about Nathaniel, but as time passes it seems that each day is a little easier. However there's something about the holidays that reminds us of the loved ones who are no longer with us. So as we enter the Christmas season I feel a new sense of loss. Now, seven months after learning the dreams for our family have changed, I continue to remind myself that I need to surrender it all to God. I need to trust that He has a plan for us and I find comfort in knowing that as we grieve and as we hope for our future, He's still in control of it if we let Him.

Nathaniel's Service

Six weeks ago today, we had a service to celebrate Nathaniel's life. It was so beautiful and perfect. We had a very simple display in the front of candles, Nathaniel's picture, his blanket and two flower arrangements. The music was exactly what we wanted. My cousin Rachel sang "Your Faithfulness" and "Captivate Us" (with her sister Jennifer) and it was so beautiful. We also chose to sing "Blessed Be Your Name" and "It is Well."
Our associate pastor, Pete Parker said very encouraging words about Nathaniel, about Mel and I as parents and about our Lord and Savior who promises eternal life and the hope that He is with us through all our struggles and sadness.
I wrote the following letter to Nathaniel just days after he was born and I read it at his service.

Precious Nathaniel,
We celebrated the day we learned you were growing inside me. We celebrated as you continued to grow and we prepared for the day you would be born. When we learned that your body wasn’t growing the way it needed to, through our devastation we continued to celebrate you and your amazing little body that was forming. We celebrated your kicks and movements and seeing your precious body and face through ultrasounds.
The night you were born, we didn’t mourn. We were in awe of you. You were perfect in your own way. God knit you together in my womb and we were finally able to see His perfection. Your sweet face, your tiny lips, your long fingers and your precious toes- we felt overwhelming love and pride for you.
Today, we continue to celebrate you and your life and our Maker who created you. We know you are safely in His arms and you are whole. You never knew pain, or fear or discomfort and for that we are so thankful. You went from the comfort and safety of your Mommy’s body to the warmth and beauty of heaven while your Daddy held you. Although our arms ache to hold you again, we will continue to celebrate your life and we will praise God for blessing us with you. You will always be a part of our life, our family, and our hearts. We love you sweet child, our son.

Nathaniel's Picture

Here's Nathaniel's ultrasound picture from Monday (29 1/2 weeks gestation)

Here's a picture of Kyle shortly after he was born. We think the similarities are incredible.

Where Two or More Gather in His Name

Last night Mel and I were watching a movie with the boys when we got a phone call from my cousin Jennifer's husband Scott. He was calling from a healing conference they were at with over 8,000 other people. He asked Mel if they could pray for Nathaniel. I'm not sure exactly what dialogue was exchanged but the next thing I know Mel is motioning for me to come in the other room. I come in and Mel whispers that they've linked our phone connection to the PA system. We are actually hearing the live healing service with about 8,000 people in the audience. We listen as the "speaker" prays fervently for Nathaniel. He prays specifically for Nathaniel's body and cells to heal and his lungs to grow and other beautiful words about him. This goes on for a few minutes. It was all very powerful and not what we expected to experience on our Friday night at home. We are so thankful for the people who continue to pray for our son. Thank you Jennifer and Scott for doing this for us.

Matthew 18:20:
20 "For where two or three have gathered together in My name, I am there in their midst."

Blessed

I was thinking the other day how blessed I am to have my two boys. Immediately I thought, no, I'm blessed to have my three boys. Somehow through all of this I feel blessed to be carrying Nathaniel. I don't understand it, but I know and feel that Nathaniel is a blessing. Sometimes I think about how different everything would be if I'd never gotten pregnant. If life had carried on as usual. Despite all the pain, the heartache, and the fear, I know that carrying Nathaniel and seeing him and holding him in my arms will change me. It will change Mel. Whatever meaning, whatever purpose his short life has, we will forever be changed and blessed because of him.

Our Baby

I recently had my 20 week ultrasound. Mel was in Indiana at Air Assault school and I had gone to the appointment with a friend. It never occurred to me that our baby might have a problem. With my previous pregnancies, everything was normal. We had always opted out of additional genetic or chromosome testing and this baby was no different. The appointment began normally, but soon changed. The technician stopped talking and stopped pointing out what she was looking at. I knew something was wrong. She never told me the sex of the baby, but said she needed to show the pictures to the radiologist and she would be back to discuss it. I knew this wasn't typical and was getting scared. She returned with an OB who informed me that she saw some things that were concerning. The baby's limbs were shorter than they should be. She didn't give a lot of details, but said I needed to have a level II ultrasound with a perinatologist and speak with a genetic counselor. I was devastated and scared. Through tears I asked if they could tell me the sex of the baby. It's a boy.

I left there feeling numb. I wanted to know more. What the possible conditions are, what the prognosis is. But I would have to wait and worry. That evening I was a wreck. I debated whether or not to tell Mel over the phone because he was close to completing his training and I didn't want him to lose his focus. Of course when he called that night I broke down. I only told him that the doctor was concerned with some things on the ultrasound. I left the information vague, hoping to lessen the blow. We agreed that I would go ahead and make the appointment with the perinatologist as soon as possible, even if Mel couldn't be there. We both needed all the information we could get so we could understand what we were dealing with.

I had my second ultrasound the following day, thankfully, because the waiting was almost unbearable. My friend rearranged her plans so she could come with me again. I was and am grateful for that. The ultrasound technician was wonderful. She showed me everything that she was looking at and pointed out cute things the baby was doing, like moving his hands up to his mouth. I could finally see my baby and all his features. He was a real, living, moving baby doing the things babies do. Although I felt better about seeing the baby, the news that followed was devastating.
I learned the baby has Skeletal Dysplasia. It's a broad term for over 200 different conditions involving bone growth and development. The doctor believes our baby's case is very severe and that he likely will not survive after birth. Our baby's chest cavity is very narrow leaving little room for his lungs to grow. When he's born, he will have difficulty breathing and ultimately respiratory failure. I was told most infants with this condition die at birth or shortly after.

It's been two days since I received that news. Mel and I are trying to deal with what this all means and how we get through this. The one thing we know for sure is that whatever time we have with our boy is precious and he will know nothing but love from us and his brothers. Right now, my body is giving him the oxygen he needs and he is comfortable and happy and thriving in every other way. He is our son and we will cherish every moment we have with him, however short it is.

We've chosen to name him Nathaniel John. Nathaniel means "Gift from God" and John means "God is Gracious." When I feel our baby kick I think of the story in Luke 1:41 where Elizabeth is pregnant with John and she is greeted by Mary who is pregnant with Jesus. When Elizabeth hears Mary's voice, John leaps in her belly at the presence of Jesus. I like to believe our little Nathaniel is in the presence of Jesus and being cradled in His loving hands. When he kicks, it reminds me that Jesus is here. He will see us through the days and months ahead. He will hold us when we need it and carry us when we feel we can't go on.