Somewhere Over the Rainbow

Just the other day I prayed for a sign. Hard. I wanted to see something or hear something. I wanted to know that my sweet William was with me. Nothing came. And then a friend posted a rainbow emoji on my Facebook status. It immediately took me back to the day that we celebrated William's life. It was such an emotional day. It was a day that I didn't really know I wanted or needed. He was so young and we had already had family in town the week before for his baptism. But we had a small church service that was followed by fellowship at my moms house. We decided to do a balloon release for him. When deciding how many balloons to get I realized he had been with us on Earth for 107 days. So I ordered 107 balloons. {logistically I hadn't thought of how to actually pick up 107 balloons from the store...but we did it!!} It was a GORGEOUS day. Fluffy white clouds and the brightest blue sky. We all grabbed a couple of balloons and headed outside. All at once we let the balloons go. It was a magical moment watching all of those balloons stick together and fly high in the sky. They could have scattered, but they didn't! Later that afternoon after most of the family had left, we were sitting around my moms house and a storm came through. At the end of the storm, God presented me with the most beautiful gift I have ever received. It was like He scooped me up and said "Sara, he's ok. He's home now". At that moment it hit me harder than ever : how can anyone question the power of the Holy Spirit? How can it be that just hours earlier we sent 107 colorful balloons up to the heavens and now I am witnessing the most beautiful, end to end, DOUBLE rainbow. GOD was there for me. He knew what I needed and when I needed it. My sweet boy was in the arms of the most Heavenly Father. It simply took my breath away.

Today, I may hope for a sign, but I know that I have received the most precious sign ever. A welcoming gift into the Heavens on that day...and I was able to witness it. As I sit here wanting to celebrate my sons birthday WITH him, I know he is having a far better celebration elsewhere. No tears today because the only song that comes to mind is "this is the day that the Lord has made, let us REJOICE and be glad in it!" Happy birthday William. Not a day goes by that I don't celebrate you and love you. {Here's a little history of my "signs". I lost my dad when I was in my first year of college. For some reason rainbows always followed me after that. And then I lost my papaw a few years later. When we moved to California I was having a really difficult time. One day out of nowhere, a rainstorm came through and produced a double rainbow. I knew it was the two of them reassuring me it would be ok. About a year later, on the day I found out I was pregnant with Jack, a double rainbow appeared out of nowhere...}

Peace

Peace. It's one thing I've prayed daily for. I know God hears my prayers, and yours, because the peace and strength he gives my soul is amazing.  I have always loved God, but until now I've never really understood the true meaning of needing Him.  This passage is so truthful for my situation. It is now that I need him most and I'm able to put everything I've loved and learned about Him into practice. He has shown me mercy and given me strength when I needed it most. 

Philippians 4:7-9 (NIV)

7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.  8 Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 9 Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.

It's been one month since I lost my sweet boy. Since William's passing, we received test results the surgeon ran the day of his surgery. Because of his symptoms, they believed he had William's Syndrome (nothing to do with his name).  This was something presented to us the day of, so we didn't have any time to look into it ahead of time. It turns out he did have William's Syndrome which is a rare, genetic disorder.  It is not something that we passed down to him or something that happened to him while I was pregnant. It is a complete anomaly. I'm not a huge fan of google, but it's the best way to learn about this disorder. What is Williams Syndrome

William had it worse than most; in fact, his heart was the worst his surgeon had seen in over 20 years.  He was in surgery for about 15 hours.  Unfortunately, he never came off the bypass machine.  The night he passed, most of you were helping us prayer for a miracle. What you may not understand is that even though he didn't make it, we are at peace with what happened that night.  His suffering ended and he was finally sleeping peacefully. 

There was nothing the surgeons could have done for my sweet boy.  There was no solution for his heart and he would have struggled without the surgery. Had they discovered it earlier, it wouldn't have changed anything. Most WS patients aren't diagnosed until much later in infancy. We are so thankful to our pediatrician for finding it so soon. He was (and is!) in God's hands and He needed him up in heaven more than I or anyone else needed him on earth. 

The morning before I lost my sweet William, my best friend sent me these encouraging words. 

"Stumbled upon this and had to share with you: 

In Joshua 1:9, God clearly instructs us to remember the importance of staying strong when going into battle. In fact, He commands us to be:'Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.'

Mama, you are strong. Persevering. Tough. Able to bend without breaking. Willing to be humbled to the point of humiliation. Not blinded. A hunter for wisdom. A praying-through-it woman. A courageous mama."

It's been one month since I lost my sweet William and even though some days it's easier, some days it's tougher than I would wish on any enemy. I have not broken and will not break. I look at these encouraging words and know that my heart is still so full of loving people. My life continues to thrive for my little Jack Jack and my family. 

I hope you continue the prayers and continue to send us love and words of encouragement. Some days I want to dig a hole and never come out. I want to cancel all plans and stay at home so I don't have to face anyone. Other days I'm ready to take on the world. Every minute of every day is a new challenge. 

I am SO thankful for the 3.5 months I had with him.  It may have been a short 107 days, but they were my William's 107 days. I praise God for every. single. moment. 

Memorial Service Information

William David Swanson

A Memorial Service for William will be held on Thursday July 24, 2014 at 11:00 am at Holy Trinity Episcopal Church (607 N Greene St, Greensboro, NC 27401).  Sara and Jonathan ask that this be a celebration of William's short life with us.

In lieu of flowers, a memorial fund has been set up for a bench that they can take with them wherever the Marine Corps sends them.  Click here to access the memorial fund.

The outpouring of love and prayers make them stronger every day. It's going to be a long road, but every minute of every day gets them a little closer to their new normal.

Sweet William

It's with a heavy heart that I write this blog update on Sara and Jon's behalf this morning. Last night around 9 PM, our sweet William died. His wonderful doctors, Drs Mill and McNull and everyone else who oversaw his surgeries, did everything they could to save him but by last night they found that his bleeding was too extensive. The decision was made by Jon and Sara to turn off the machine keeping him alive. He left us quickly and without any pain. Sara and Jon have deeply appreciated everyone's prayers, and need them now more than ever. No arrangements have been made to memorialize William but we will keep everyone updated through this blog. 

Our family has felt so loved through this process from all of you. The outpouring of well-wishes and prayers, and Sara and Jon's own steadfast faith in God, have kept them going in this trying time. All day yesterday we knew in our hearts that things were looking bad. Our prayers for William were for him to find peace in whatever capacity God saw fit, and last night we believe that He answered our prayers by letting that sweet boy go without pain or anguish. Thank you again for all the love you've shown my sister and Jon during this time.

George

Update

Surgery didn't go quite as planned. He had more blockage than they originally thought. The surgeon did clear all of the blockage, but when they took him off bypass his left ventricle wasn't functioning. He opened him back up and tweaked a few things and was able to get some function back. Because of this, he thought it was worth it to put him on ECMO (life support for heart and lungs). They are hoping this rests his heart enough for him to regain full function. We have a 3-5 day window and then there is nothing more they can do. We didn't get to see him until almost midnight yesterday so it was a long, long day for everyone involved. This morning they put him on dialysis to help rest his kidneys. They would not be taking these steps if they thought he couldn't recover. The doctor said it's 50/50.

Our God is bigger than this. William is His sweet little boy. We've just been blessed to call him ours on earth. Please continue praying for our family. We need strength to help him be strong on his journey.

Pre-op appointment

Hi everyone!  Today we had the pre-op appointment for William. We met with the surgeon's nurse, anesthesiologist, had a chest X-ray, blood work and EKG done. It was a busy day!

The nurse clarified a lot about tomorrow's surgery. The doctor will open his chest (2-3 inch incision) and he will be put on bypass. The surgery will start at 8:00am and last about 6 hours which includes about an hour of anesthesia prep. We will be at the hospital at 6:30am to get him prepped. He is the first and only surgery for Dr. Mill tomorrow.

He will be fixing two areas of narrowing. One is the aortic valve and the other is at the top of the aortic curve. They will use donated tissue to fix these areas. The pulmonary artery also had blockage, but they believe he will grow out of that so there is no need to fix it. The nurse says it is not common for babies to have this much blockage, but it is something they have seen and have fixed.

One of the biggest concerns is his blood pressure. Since his heart is beating twice as hard (literally) as it should, they are worried that once they open the valve his body won't know what to do with a normal blood flow. Depending on his reaction will depend on his time in the PICU. They are thinking he will be there for about 3-4 days for any normal reaction. During this time he will be under sedation and have a feeding tube.  He will have a lot of IVs and monitoring devices hooked up to him.

Today went as good as could be expected. Hopefully tomorrow will be the same!  Thank you for the continued prayers. I'll keep you posted as much as I can!

"When a train goes through a tunnel and it gets dark, you don't throw away the ticket and jump off. You sit still and trust the engineer."
-Corrie Ten Boom

A woman who fears The Lord is to be praised

11 days until surgery

Until then....

We carry on with our normal lives. Just because we receive devastating news doesn't mean the world stops. We might wish it could...but it won't.  We have to balance our normal lives with the huge elephant still standing in the room.

From the outside, William seems fine. His hands and feet get clammy and I panic at the mere sight of him breathing too heavy or quickly. Other than that, he's a normal little three month old!  He is starting to kick his feet, smile and move his hands all around. He coo's and babbles and is very alert.

We've gotten a lot of the logistics figured out and I am SO thankful for family that has offered to help. Our support system is amazing and we couldn't do it with them.  A lot of details are still up in the air so we are having to be very flexible and patient right now.

Emotionally, I keep reminding myself that I am strong and will remain strong for my boys. I keep going back to Proverbs 31 and trying to match up to what a wife of noble character is.

25 She is clothed with strength and dignity; she can laugh at the days to come.
26 She speaks with wisdom, and faithful instruction is on her tongue.
27 She watches over the affairs of her household and does not eat the bread of idleness.
28 Her children arise and call her blessed; her husband also, and he praises her.
29 "Many women do noble things, but you surpass them all.”
30 Charm is deceptive, and beauty is fleeting; but a woman who fears the Lord is to be praised.
31 Honor her for all that her hands have done, and let her works bring her praise at the city gate.

I've always been drawn to that passage, but now it impacts me more than it ever has. 

Thank you all again for the continued thoughts, prayers, cards and everything else. We are blessed to have so many prayer chains going across the country!!