Thursday, April 18, 2013

The Worst News

Please Note: I will continue typing a small paragraph at the very beginning of each post about our recent, day-to-day interactions or stories with Isaac, while he's here with us. The "real" posts will begin Immediately after, starting with the title of the blog post. 

Thursday, April 18, 2013-

-This morning I told Sydney that we had some errands to run and needed to get ready for the day. When I told her we could stop at the park for ten minutes on our way, she got so excited, ran over and wrapped her arms around my tummy/Isaac and said: “I love you too, Isaac!” and then she started tickeling “him” (my tummy) and laughing. I love this simple conversation she has with him, though I don’t get to hear Isaac's side of it like she does :).
-Yesterday I walked into the living room where Sydney was watching a little show where the curtains were blowing at night time and the little girl got scared. Sydney ran over to me and said “Cover baby brother!” and put her hand on my tummy as if to cover his eyes or protect him from this “scary” part of the show before running back over to the couch and covering herself with the blanket. :)
-I love when I can write a thank you letter and include Isaac’s name at the bottom when I sign it. He is part of our family now and forever, but now is the time he’s actually here in person to receive the few material possessions that will be his and thank people for it :). They make me soo happy.


Isaac's story: Post 3

The Worst News
"It was two weeks later that we learned the information, which we'd received at that appointment on February 7, was not the worst news." (Ending from last post).

Here it is- "the worst news"
In a letter I sent out to my family on Tuesday, February 19th.

Dear Family,


You hear about those life-changing phone calls, or at least you see them on TV or in the movies-Whether it be the death of a loved one, a bad accident, or a call from the Doctor, with lab test results.


I've never received a phone call before that told me so much about our future, yet also so, so very little.


The call came around lunch time yesterday, Monday, February 18th, from the Doctor. The lab results had come in. I origionally had wanted to go in with Scott and hear the results but I was so confident and full of peace that when she asked if I wanted to hear them over the phone I said yes with no hesitation. As she told me the results, I was kind of shocked, but at the same time didn't seem phased. Then, when I told Scott, it all sunk in.


I woke up this morning with numb skin around my nose, and puffy eyelids. It hadn't worn off since last night.


The blood tests came back positive for Trisomy 18. The test, which is still considered a "screening," is 99% accurate.
You can google search it just as easily as I could copy and paste the information about it to you, but here is the main information regarding our son's life.

The doctor told me that if our baby boy would make it to birth (most don't), he will have a 50% chance of dying within the first week of life. Given the critical conditions of the body with Trisomy 18, most babies cannot thrive, with nearly every organ affected. The remaining 50%, who do not die in the first week, she told me, would die before their first birthday. Some cases, a very small percentage, have made it past a year, mostly being girls, and even into their 20s or 30s - depending on the level of Trisomy 18, but this is a very small percentage. Trisomy 18 is for the most part, considered fatal, given the terrific state of the body.

I don't know if I've ever had a time in my life where I've felt so suddenly lost and so sad. But thanks to priesthood blessings, I am doing better. I can imagine our family's future, but I have no idea which future is in store for us. Given this information there are still too many unknowns, and there is still always room for miracles.

I think the thing that hit me the most is that now this miracle we were/are hoping for has become a matter of life or death for this baby. I believe if the baby is meant to live a life on this earth, God could and would heal him according to our faith and according to his purposes. However, we all have a time in which we are appointed to die, and no amount of faith can change that part of Heavenly Father's plan.

And so for me, the question is: Does Heavenly Father want this child for greater work on the other side?? Or does he want our son to contribute to His work on this earth? This is what I can't answer and so the reason I felt so lost, and unsure what direction to take as far as what to be hoping for or having faith in.

I've learned sooooo much about faith up until this point, and after my eyes were opened even wider yesterday, I've learned even more. I feel much better today than I did yesterday when I felt so lost, scared and sad, although if our baby didn't already consume my every thought before, he certainly does now.

It has really helped me to be open minded about the 2 possible outcomes for this child- and I am accepting of either one- life or death.

I was praying all along that if Heavenly Father would heal our son, I would give him, as well as myself, to the Lord to build up His kingdom and help bring others unto Him. I feel that that is the ultimate "will" of God in any circumstance - to bring to pass the immortality and eternal life of man. And so that is how I went about this whole experience, praying for a miracle so that we could help build the kingdom.
Now I can see that maybe the miracle would be to at least get to meet our son, for a week, a month, or a day---and then as promised, I would given Him to the Lord to build His kingdom- only not here on Earth. I had never thought of that option before, but now it is real.

Scott and I want to name our baby boy as soon as we can so we can begin to gain a stronger, more personal relationship with him while he is still here, however long that may be.

I am still praying for a miracle, that he be healed, however I've learned that it's not having a lack of faith to still believe the alternative might occur. Of course, we desire for our son to be made whole, and to be able to raise Him. And that is what we will continue to pray for, but we will not lose any faith if that is not the outcome.

We need faith stronger than before. It is soo hard. It's soo hard to have this kind of faith in a situation like this, but that will make it all the more a miracle if that is what's to be. If nothing else, the miracle will be the amount of faith we gained through this experience and will continue to gain for the rest of our lives. We are dedicated to it. We are grateful for it, and we are grateful for this experience in our lives to build ourselves up unto the Lord and become stronger, more faithful sons and daughters of our Heavenly Father. This really is the hardest thing I've ever been faced with in my own life, but I really am grateful for it, as hard as it is, because I know the reward of enduring it with great faith- will bring the greatest joy I've ever experienced.

I could go on forever with my thoughts and feelings, each and every day I could, but I'm sure I've already said too much.


Thank you for reading and thank you for your support.


We love you all and are sooo grateful for your prayers and other means of support.

Thank you for fasting with us on the 10th, it was a very cool experience. We could really FEEL, the power from everyones fasting and prayers. I've never experienced that before. So thank you!


After typing this I feel like it was all very morbid and down, but really, we are strong and we will be ok! AND we haven't lost faith in a miracle! But even without what we would consider a miracle, we know that God knows best and we are ready and willing to take on whatever it is He has in store for us! We will just do it. It's as simple as that.


Love you all,
Steph
Scott and Syd

6 comments :

  1. You have true faith...you have faith in the Lord's will and are willing to submit to it. And you are grateful for this trial even in the middle of it. That is beautiful faith. Thank you for your example!

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  2. You give me strength. Your faith is contagious; thank you for sharing your sacred experience!

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  3. Thanks for sharing Steph. Beautifully written. Thinking of you and your sweet little family.

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  4. Thank you Mary, Shadow and Farrah! You guys give me strength through your comments and support! So thank you!!!

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  5. You inspire me on an incredible level. Your strength, faith, and dedication to your family during adversity (and during the other times as well) makes me refocus and evaluate where I am and where I want to be as a mother, wife, and daughter of God. Your family is very lucky to have you. Thinking of you and praying for you

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    1. That is so very sweet of you. Thank you so much for your kinds words and prayers Kristin!

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