Dear Reader,
The following is not my story, but another’s. In fact, Peter and Chelsea Fanchi came here as college interns several years ago. They were a great addition to our staff that summer. They resumed their college careers and later married. They have 2 young children, Peter (4 years) and Maria (2 years).
A few days ago we received the following email from Chelsea and Peter. We hadn’t seen their facebook postings so were glad they contacted us. As I read their “journey”, I knew I wanted to share it with you (I have done little editing). We love and serve the same God and though our struggles are different, it is as I have always maintained; God is there in the midst of our suffering, He is the same and able to hold us together, whatever our circumstances. His Word is true and faithful, because He is true and faithful. Putting His Word into action, doing what it says, is to us life and peace. Instead of turning away from God in frustration or anger, we run to Him and find He is our Safe Place.
Please prayerfully read Peter and Chelsea’s story, a story they are living out each day, right now. Please also pray earnestly for them.
Thank you, and may God enrich you as you journey with us.
Jacque
Dear Randy and Jacque.
Peter and I are walking down a tough road and humbly ask for your prayers. Our third child is due at the end of September, in May we found out that he has a terminal form of a disease that will likely take his life within hours or days of his birth. Below are the email/Facebook updates we have been sharing with friends and family. I know we are "friends" with the two of you on Facebook, but it is easy to miss things people post there.
We think and pray for the two of you and the ministry often. It was fun to hear about Dan and Erica's recent trip to WV and to see pictures. It made our hearts warm.
Take Care.
Chelsea and Peter Fanchi
May 11th
Dear Friends and Family.
Our journey since May 11th, 2010 has been a difficult one. On May 11th we found out that we are anticipating the birth of another sweet baby boy, also on this day we found out that he has some significant abnormalities to his heart that will likely take his life before he reaches full term in September/October.
It was this news that caused/causes us so much pain, and heartache. We never imagined such a thing could ever happen… knowing your child was terminally ill in the womb and waiting… waiting for him to die, waiting and hoping he will be healed, waiting for the grief of not bringing a baby home from the hospital, waiting… It was in this three week period of grief and waiting that I found deep comfort in Psalm 139, it reads:
O LORD, you have searched me and known me.
You know when I sit down and when I rise up; you discern my thoughts from far away.
You search out my path and my lying down, and are acquainted with all my ways.
Even before a word is on my tongue, O LORD, you know it completely.
You hem me in, behind and before, and lay your hand upon me.
Such knowledge is too wonderful for me; it is so high that I cannot attain it.
Where can I go from your spirit? Or where can I flee from your presence?
If I ascend to heaven, you are there; if I make my bed in Sheol, you are there.
If I take the wings of the morning and settle at the farthest limits of the sea, even there your hand shall lead me, your right hand shall hold me fast.
If I say, “Surely the darkness shall cover me, and the light around me become night,” even the darkness is not dark to you; the night is as bright as the day, for darkness is as light to you.
For it was you who formed my inward parts; you knit me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works; that I know very well.
My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.
Your eyes beheld my unformed substance.
In your book were written all the days that were formed for me, when none of them as yet existed.
How weighty to me are your thoughts, O God! How vast is the sum of them!
I try to count them—they are more than the sand;
I come to the end—I am still with you
There are a number of things from this passage that bring immeasurable peace.
~God knows our thoughts even before a word is on our tongues~
It was and sometimes still is so hard to know how to pray and what to pray for… sometimes we just sigh… what comfort there is in a God that knows us so completely.
~We are not alone~
We can NEVER run or hid from the Almighty! He is with us, “hems us in”, and is with us no matter where we find ourselves. Such peace we feel knowing that the dark is as light to him.
~God sees our unformed substance~
God loves all of us, with a PURE FATHER’S love! He is pained by our baby’s physical brokenness, He is pained at our parental loss, grief, and sadness, Psalm 100:3 says
Know that the LORD is God. It is he that made us, and we are His; we are his people, and the sheep of his pasture.
~God stands with us~
We know that we do NOT make this journey alone, and when we come to the end (of all of life’s journeys) we are still with Him, and He with us.
After receiving our devastating news on the 11th we quickly realized that our son needed a name… WE needed him to have a name. Our son Peter, from the moment he knew we were expecting a baby, said we were having a boy and that we should name him, “Heavy,” so in his presence we call our baby son, Heavy… it is kind of his sweet nickname. Our baby’s formal names chose us more than us choosing them, (FYI, the order has not been determined).
The first name that brought us peace, and continues to, is a Hebrew name, Falito, meaning, “One who has been healed by God”. As we have begun to explain “Heavy’s” condition to Peter we have explained it to him that his brother is broken and the doctors can’t fix him. Mom can’t fix him, Dad can’t fix him. On several occasions, Peter will get his doctor kit and tell us he wants to fix his brother. We know that will not fix him either. We find comfort in the knowledge that when he leaves us our son will be made whole, “fixed” by God.
The second name that brought us peace, and continues to, is also a Hebrew name, Jessiah meaning, “God exists, a gift from God, God sees all” As we have traveled this journey the past few weeks we have experienced the miracle of prayer. May 11th we were struck with such grief we physically could not stand, two weeks later, we were able to say with a praise filled heart, God is good, even in the midst of such pain… God exists… As we have shared our son’s story with friends, family and those in our community, people have been struck by it, reminded of God’s love for them, reminded of who God has created them to be. There is a song on the Christian radio station (a station my dial doesn’t happen to frequent… I listen to lots of preschool selections J) that I happened to pick up a few weeks before we found out about “Heavy’s” health problems. It took on a new meaning for me after we had our news,
MATT MAHER- HOLD US TOGETHER
Love will hold us together,
Make us a shelter to weather the storm
And I’ll be my brother’s keeper
So the whole world will know we are not alone
Our church family has truly sheltered us with love. We have never felt alone… phone calls… play dates… babysitters… meals… hugs, hugs, hugs. This has been a testimony to the power of God’s people as we share life with one another and to the power of the Holy Spirit moving among His people… a Gift from God…
On June 7th we had a follow up ultrasound and found out that our son’s condition has worsened, he is only anticipated to live for another week or two, with only 10% chance of making it three weeks. We knew that this appointment would not be an easy one, but we were hopeful that it would give us something to prepare for, and that it has. We are beginning to think through the last parts of our journey with “Heavy” and to be honest, we feel heavy about the decisions that are before us and the road that we must travel. We covet your prayers.
On the night of June 6th/morning of June 7th, I had a dream that I held our son… and he was whole, perfect, smiling, a soft pink baby with fuzzy hair…a Gift from God, He has already healed him… I am thankful that Christ has overcome the world.
Since May 11th, our baby’s pictures have been framed and serve as the centerpiece on our dining room table, we talk freely about him and the journey we all are on with each other and our support network. Little Peter tells his brother jokes and stories and gives him all sorts of hugs; Maria loves to “pat baby.” We are cherishing each moment with him. On June 7th Peter and I saw him swallow two times on the ultrasound… a living moment, in our hearts FOREVER!...
We are thankful for the life that we have been given, we know to a fuller degree how precious it is. We are thankful and filled with wonder as we think about our two healthy children. As we hold them tight and love them deeply, to have brought them home is truly a gift…Life is a mix…
We hold fast to the promise that our God is a redeemer and a place of rest for our souls (Matthew 11:28-30). And it is here that we wait… and try to live as we wait… please wait with us and pray with us…
~Chelsea and Peter Fanchi
July 23rd
The following is a conversation I had with (little) 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. --------------------------------------------
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-----------------------------------------------
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.--------------------------------------------------------------------
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.”
August 11th:
On our way to the ultrasound on Wednesday, Peter and I were talking about what specific questions we wanted to ask, and how we were each feeling going into this appointment. We agreed that it seemed quite strange that these advanced ultrasounds have begun to feel quite routine.
We both had only one question, “Doc, can you tell us what to expect?”
Earlier in the week, while the kids were napping I was attempting to finish reading a novel I have been reading for a while, I couldn’t get the name, arthrogryposis out of my head. It was driving me crazy. I figured that the only way to get it out of my head was to google it and find out more about our son’s disease. I was thrilled to find out, as I was reading that we had been perfectly informed. Our doctors had left out not one detail on the condition our son has. This was a comfort to me and only increased our already high confidence in our team of specialists. I also looked at images of children with this disease so we would be visibly prepared for our son’s appearance. Some of the pictures were clearly post-mortem images, others of adults who live everyday with the disease. I am glad that I took the risk and that God protected my heart so that it was a helpful experience, and not a scary one.
The ultrasound revealed to us two changes in Heavy’s condition. First, is one of the valves in his heart has begun to leak. This was expected, only the doctors had expected it would happen much sooner. The other surprise is that our little guy turned around… he is now breach! We go back in on the 30th of August and our doc is going to attempt to flip him manually. Even though we are LESS THAN THRILLED that he is breach, it is pretty cool that he is strong enough to flip himself over, he keeps on surprising us with his strength and determination.
As we were discussing with our doctor the changes in Heavy and our question of what we can expect, he said a very sweet thing. His words were, “your son is pretty remarkable, he continues to exceed everyone’s expectations.” He also told us that Heavy’s outward deformities will be mild and that in some cases this disease can be pretty ugly.
We are very proud that our son is a fighter, that he has exceeded expectations the experts have placed on his little life. It seems his personality, even now, fits our family and that is not only encouraging to us but is also a testimony to the prayers lifted on his behalf.
Please continue to lift our family in your prayers, especially in these ways:
*We are beginning to feel anxious about the upcoming birth. Heavy’s arrival seemed to be such a long way off, and now we are approaching the 6 week mark! It is a bit messy in our heads to prepare for the pure excitement of a birth and the courage to let the Lord scoop him up from our arms.
*Emotionally, physically, and spiritually we feel like we are in the eye of the hurricane. The huge storm has rolled through once catching us off guard and knocking us over. We have cleaned up that mess, rearranged the items that were blown around, and prepared for the backside of the storm as best we can. Now we wait. We feel at peace, and full of thanks for this time of waiting, we are cautious not to wish it away and with it Heavy’s life.
*We are so thankful for the random emails and cards from friends, family and total strangers. Through them we have been uplifted. Thank you also for sharing our story with those you know, it brings us more comfort than we can express with words to know that however short Heavy’s life on Earth may be, his “story” will have a lasting impact on our family and those who have chosen to walk this journey with us.
*Heavy is once again in the breech position as we mentioned earlier in the update. Our doctors think they can flip him to a head down position. This will happen during the week of August 30th sometime if necessary. Please pray that he summons the strength and coordination to do it once more and only once on his own.
*Join us in praying that Heavy would be strong, strong enough to be born alive, strong enough to live to meet and be held by his family.
