The following is a conversation I had with Peter before his rest time, this week.
“Mom, can I hold Heavy when he is born?”
“Of course you can, if he is breathing or not, you can hold him.”
“How can I hold him if he is already in heaven.”
“Just Heavy’s insides will go to be in heaven.”
“Will his insides look like a caterpillar?”
“I am not sure what his insides will look like.” (at this point I am not sure why he is asking that question)
“Will he be flat?”
“No, your brother won’t be flat.” (now I get it! If Heavy’s insides are in heaven, then he must be flat… like he is destuffed… deflated) J
“Heavy’s spirit will go to be in heaven. Peter, I want you to think of something for a minute, but don’t tell me what it is until I ask, ok?”
“ok”
~Thinking, thinking, thinking~
“Were you thinking about pizza?” I ask him
“No.” he explains in a very dramatic voice, “I was thinking about trees, and that some trees have holes in them, and I am wondering why that is.”
“Peter, I had no idea that is what you were thinking about! The thinking part of Heavy, the part of him that lets him feel, tells him when to laugh, when to cry, smile, be happy…. That is the part of him that will go to be in heaven. The moment that Heavy stops breathing his spirit ~the thinking part of him~ will go right to heaven and he will have a perfect and unbroken body waiting for him. That is the body we will get to see when we meet him again in Heaven someday.”
As if everything is clear in Peter’s little world again, he replies, “oh. lets read our book now.”
We then read our book before rest time, all the while Peter has his arms around my 30 week sized tummy, snuggling and rubbing his baby brother Heavy. At some point during the chapter we are reading his head migrates to my shoulder and he falls asleep there with his hand on my stomach.
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Our Heavy has a diagnosis, arthrogryposis. According to our neonatologist, perinatologist, and midwife this really is a “garbage term” of a disease. There is quite a spectrum. There are some children that have this disease who go home from the hospital with their families and live a life that is typically wheelchair bound and in a special needs environment.
Our doctors have told us that Heavy is not on this end of the arthrogryposis spectrum. His variety of the disease is fatal because of the number of additional anomalies that are present in his body.
We have begun to make a life plan for him. What procedures we are and are not willing to perform in the short time we are given to spend with him. Because we believe that he will be instantaneously made whole upon death, we are looking forward to quality time with him in place of quantity of time.
Our medical team has advised us that we will have hours or up to a couple days with Heavy. Our plan is that family will be notified when we are in labor, they can quickly come to the hospital and as soon as he is born they will be ushered in so he can meet his family and we can enjoy him together.
Our due date is September 27th
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When we found out that our son was broken, we found an intense need to name him, to name his something that had significance and meaning for his and our situation. We considered naming him Falito Jessiah (one who has been healed by God; God sees all, a gift from God, God exists). However, we have realized we can only refer to him as Heavy. Peter named his brother from the moment he knew of his conception. We have found so much comfort in this name, and in the prophetic voice of our son.
Heavy has indeed been a heavy load to carry. It has been difficult emotionally, physically, and to a degree spiritually. Our neonatologists told us that our son will be heavy when he is born because of the extra fluid his has in his body. My aunt Kristie passed long a page from the devotional, “Names of God” to us, referring to how “heavy” is a name related to God. The following is our summary of the devotional.
The voice of the LORD is over the waters; the Glory of glory thunders; the LORD is over many waters. Psalm 29:3
King David’s third son Absalom, had beautiful hair. Scripture says that his hair was, “heavy upon him” (2 Samuel 14:26)
The Hebrew word that is used to describe the heaviness of Absalom’s hair is directly connected to the word scripture uses for “glory” when it addresses God as the “God of glory” it’s the word kabod, and it essentially means, “heaviness and weightiness.”
In scripture when the word El and Kabod are used in Psalm 29, the image that is painted in the writing, is a picture of God that displays undeniable heaviness, weight, gravity and substance to Him.
Throughout the journey our family is taking with the birth and giving over of Heavy to God we want God to be glorified. We want His story told, how he has walking with us, carrying us when we can’t walk and surrounding us with his presence that is felt through his Spirit and his people.
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If you are choosing to pray for our family during this time. We are asking for these specific prayers:
When Peter was born we felt that we were able to bond with him even in the midst of our labor with him. (roughly 10 hours). We were only in labor with Maria for four hours. She was born so quickly that we didn’t feel like we were able to bond with her as she entered this world.
We would like both of our sets of parents to be at the hospital waiting for Heavy to be born so they can meet their grandson. They will be traveling from St. Louis (10 hours driving and 1 ½ hours by air –plus airline wait time etc), and Fargo (3 ½ hours driving). It is our sincerest hope that he is born alive and they are able to come in with our children moments after he is born and we can drink up his life together.
It is at our core to believe that birth is a natural occurrence in life. That if a mother is not sick, or injured that she does not need medicine to deliver a baby. God created a women’s body to do it. As a mother I have actually greatly enjoyed the whole process of birthing our children without the use of medicine but rather listening to my body and being surrounded and supported by those who I love and love me (Peter and our midwife, Kathrine Simon).
So here is our very specific prayer request:
Please pray that Heavy is born alive. We want to meet our son and have him meet his family.
Please pray that the birth is be long enough for us to recognize it as labor, notify family and for them to arrive at the hospital in time for them to meet Heavy alive.
Please pray that given the emotional weight that this birth carries would not cloud my strength to deliver Heavy in a natural manner.
Please pray for us as parents of Peter and Maria that we will continue to give them what they need as a four year old and a two year old. And help them to process this in a healthy way.
Please pray for our next ultrasound Wednesday, August 11th at 2:15pm.
~Peter, Chelsea, Peter and Maria
Psalm 89:1
“I will sing of your steadfast love,
O LORD, forever;
With my mouth I will proclaim your
faithfulness to all generations.”
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