Belief, Faith, Love...and a Promise

Today we bury our son Isaac.

After all our prayers, petitions, campaigns, tears, and heartache. We have to endure more. There is a war in my soul...belief vs. unbelief, faith vs. doubt, love vs. anger. And I can't help but choose belief, faith, and love. Belief that through all of this terrible experience, God is in control somehow. Faith that God still loves us and cares for us, even though life sucks right now. We can't help but see the love God has for us through this incredibly painful process. We could have easily chosen to stop believing in a God that allows such sickness and pain to exist. We could have easily lost faith when our son's heart stopped beating. We could have easily chosen to be angry at the world and hate God for what He "did" to us. But, we couldn't possibly make that choice. And here is why.

We believe God is in complete control because of the timing of Isaac's passing. We weren't even ready to tell you all about Isaac until last week. We had just gotten to the point of full acceptance and pride in our son. We had just gotten to the point of accepting that even though we had a son with trisomy 13 God was in control of that situation. I just started talking to God again, thanking Him for my son, and acknowledging how Isaac was already a miracle. If Isaac had passed a week or two earlier my belief might have died with him.

We believe God is in complete control because Isaac was spared. He was spared the pain and discomfort of the life he would have lived...seeing people look at him with disgust, or confusion because of his deformities. He will never know his unimaginably lower physical and mental limitations. He will only know the warmth of the womb and the light of heaven.

We have faith that God is good, because of how everything happened. Last week we asked for financial help and in 2 days we had everything we might ever need and more!!  That money was available to me the day we needed to pay for the funeral. We prayed before we went into the hospital (feeling like there was something wrong), asking God for help with a stubborn public hospital that has too many rules. The hospital staff let me stay with Jonesí all day for 2 days, while the rules state that I can only visit from 4pm to 5:30pm Monday through Friday! They let us choose between a C-section and natural birth, while the rules state that C-sections are an emergency option only. They went out of their way to provide a private room for labor, though there are no private rooms at public hospitals. They gave us the option of an epidural for the labor, though the rules state that epidurals are to be used for surgeries only. We prayed and told Isaac on separate occasions that he was free to leave this world when he wanted. He "waited" until we were ready to handle it, physically, mentally and spiritually.

We choose to see love instead of being angry, because of all of you! We are overwhelmed by the amount of love and support shown by all of our family, friends, and acquaintances!! There are no words to tell you how much love we feel from all of you! The notes, messages, phone calls, kind words, and help we have received are truly amazing. Thank you! Thank you for helping! Thank you for loving! Thank you for praying!!

Now we rest on the promise that there is a heaven. In that heaven there will not be tears. If that is true then this also is true. We will see Isaac in heaven. If the promise of heaven is true, then the promise of no sickness in heaven is also true. That means that we will play, run, skip, laugh, hug, tickle, and kiss Isaac!! And he will see, hear, talk, walk, run, play, laugh, hug and kiss us!!

Isaac came into this world a blessing! He has left this world blessed! He came into this world our hope and prayer for a son. He leaves this world Isaac David Butz Guzman!!

The Story of Isaac

Back in January we had a 16-month-old daughter, (thing one) a new baby on the way (thing 2) and all the hopes and dreams that come along with that picture of happiness.

Then came our first ultrasound at 12 weeks. We were hoping to find out if our child was a boy or girl! To be honest, we were slightly nervous. We knew we were taking a risk getting pregnant at 41. We were ready to hear that our little bundle of joy might have Down syndrome. We were as prepared as we thought we could have been.

That day we learned that our baby was a little boy who we named Isaac! We also learned that Isaac has trisomy 13 (which was later confirmed by an amniocentesis). While we might have been ready to hear that Isaac had Down syndrome (also called trisomy 21), we were not at all prepared for this. Honestly, we didn't even know trisomy 13 existed. We were shocked, lost, grief stricken, angry, sad, and clinging to strings of hope and praying for miracles.

Trisomy 13 is a syndrome not unlike Down syndrome in that the patient has an extra chromosome. With trisomy 13 this anomaly occurs on the 13th chromosome. It causes high risk of miscarriage, numerous forms of physical deformations, mental abnormalities, and a very short expected lifespan.  

Time passed as if in a fog. My feelings were akin to those of loosing a loved one, but more complicated. I was grieving the loss of the life of my child that was still growing and alive in my wife's belly. That led to feelings of guilt. I felt like I was giving up on Isaac, though he was still growing, still very much alive. The guilt led to depression and self-loathing. What kind of father was I to give up so quickly, so easily? Along with these feelings was the spiritual struggle. Where was God in this?

You see, I knew we were going to have a boy long before the doctor told us. One night as I was praying for our child I felt God's presence. A conversation I had with God years before came to mind. Back in 2004 I had prayed and asked God for a son to carry on the Butz name. It was a desire of my dying grandfather to see his name live on to another generation, and I was praying that God would grant him this wish. God told me back then that the Butz name would live on, and that night in 2015 He told me this new baby was that promised son. Because of this promise I felt confused, betrayed, and angry. Why would God bring all of this to my mind just to give me a son that might not see the light of day? That I may not be able to tickle, cuddle, sing to, rock to sleep, play catch with, watch football with, watch grow up, or see get married?

As time moved on we have learned more about Isaac and trisomy 13. Physically Isaac has various deformities: 6 fingers on both hands, a malformed nose, ears in a lower position than normal, one ocular cavity that never formed, one kidney that is covered in cysts, a brain that hasn't fully formed, and a heart that has one ventricle smaller than the other. We most likely won't know how serious these issues are until he is born. He may come out and go straight to surgery. Every visit to the doctor is filled with nervousness and stress. 

As the raw emotions started to fade my wife and I started to have a desire to take some action. We felt like we weren't giving Isaac his due. After all Isaac was alive and well in the womb! He will be our first-born son! And we decided to treat him as such...to celebrate the miracle that he already is...to give thanks for the answered prayers for another child, and for our first son!

Announcing Isaac due September 25th!!

We also started budgeting for every possible outcome:

C-section in the private hospital $6000

Construct an extra room for Isaac $3000

Doctor appointments before birth $500

Funeral Costs $1000

Clothes and baby supplies $500

We started investigating ways we could raise this money. Then we started to see God's helping hand. SCORE International (the mission I now work for) sent us $1320! We also received help from various friends and family members amounting to $2650! At our last doctor appointment, in the public sector, we were offered a guarantee to be able to schedule our C-section with them (something that we were told before wasn't an option). Effectively a $6000+ gift!! All of this we were offered! The only person we asked was God, and he has provided!!

Now we have to ask. We have $1030 left that we know we will need if Isaac makes it home. Surely there are more things that we don't even know that we need yet. We are asking you to help us get there. Would you consider giving to Isaac, to help us provide for him all that he deserves?

You can give through PayPal by clicking on the link in the right hand column of this blog. You can also click here to give through my page with SCORE International. Everything given will be used to provide for Isaac, from diapers, doctor appointments, toys, surgeries, blankets, paint for his room, or God forbid, funeral arrangements. 

We appreciate, immensely, the outpouring of love, support, comments, and prayers. And we are completely overwhelmed by the amount of grace, mercy and love God has given us. If you are so inclined, please join us every Monday in prayer and fasting for our son Isaac. We continue to ask God for what we know He is capable of doing. We pray that Isaac is able to enjoy a long and high quality life!