What is their site again? I can’t access it from the above address. Love to hear their story. Thank you!

I’m not sure what his twins (yup, twins) were going through, but it was with their hearts. But they have been doing great and unexpectantly on January 9th, their daughter Gracie passed away. I was reading their site and thought of you and Loi and Nathan.

Their story is beautiful and at times painful. But I think you can appreciate it all. Even though y’all don’t know each other, I think you can find some comfort in their prayers.

http://www.caringbridge.org/cb/viewHome.do

Thinking and praying for y’all everyday.

Your faith is very admirable and strong. Thanks for sharing your words. We will continue to pray for peace for YOU and miraculous healing for sweet Justin.

Hadden will always have a slight speech impediment but we barely notice it. His motor dysfunction is greatly improved. He is very bright and tends to be on the hyper side. Shannon calls him “her little guy” and looks forward to seeing new photos of him. He is a little rascal and his teacher says he is the life of the classroom.

I know Justin was sent to you for a special reason. It is not up to us to know that reason but only for us to learn from it. Cherish each day with him and learn from him.

Doctors, surgeon, nurses, and physical therapists tell us that there is hope that he’ll regain function of his arm. They also said that he may have some motor and speech impairment, but physical and speech therapy should help him reach his potential. Does your grandson still have motor or speech dysfunction?

Jen

“What could have been” can still happen for Justin. He is so tiny and his brain can heal. My second grandson had a stroke when he was 5 months old. We felt as if it were the end of the world for him but it wasn’t. He has a motor dysfunction and was a little slow with speech. Today at 6 he is smart, active and a delight to have. Keep your faith and love Justin as he is and not for dwell on what might have been.

Prayer to you all

Thank you for your beautiful thoughts. I hope that you will continue to pray and allow faith to help heal your wounds. With every obstacle we face and overcome is strength–emotionally and spiritually. I will pray for you, also. Thank you for being a voice of support through our trying times with Justin. I want to do the same for you.

Love,

Jen

In our own lives recently we’ve had to believe that things - all things - happen for a reason, even when they are painful and when we would, given a choice, arrange them another way. The other alternatives just lead to despair.

I’m always encouraged to see you keep fighting and loving and praying and believing. I know I have battled some of my own demons in the last few days - it’s so tempting to think that difficult circumstances in my life are what they are because I did something wrong or lacked faith or prayed the wrong way or whatever… but I truly believe God is merciful and kind. Even in the face of fear and pain and loss, he bring blessings.

I hope you will all have peace and strength and abundance as you take each moment and each day as they come to you, and I hope you won’t lose sight of the blessing that is each new day and each smile and each breath of your child.

Love,

Nikki

Thank you. I’ve read some of your blog, too, and I remember one post saying how you don’t want to read other heart moms’s blogs because it creates a sense of fear of what could be for Jillian, and it brings you great sadness when you do read of other children’s sad stories. But, knowing that another heart mom is going through the same emotional turmoil that I go through gives me great comfort. In the beginning, I really thought that these surgeries are such standard surgeries that only good could come from it. But, no one warned me that each child recovers differently. I’ve come to a point, now, where I don’t ask of the risks and the likelihood of it happening, anymore. Because, the risks are there. And, somehow, Justin always gets all the odds.

My Justin, he’s so beautiful. And, with all these negative odds, I hope there will be some positive odds working in his favor (like his rhythm problem fixing on its own; the electrophysiologist said there’s a chance!).

I told the priest that I don’t know how to pray because it’s not up to me what happens to Justin. What is meant to happen will happen. All I can pray for is his strength so that he can get through all that he must go through. The priest told me to pray for whatever is in my heart, and to keep that faith, and keep asking for every miracle. I did as he told me and then wondered if I wasn’t believing enough, if that was the reason why Justin is enduring all this.

There is this constant conflict I experience with trying to find blame. But, there is no one to blame, Dina. I can’t even blame myself. Helpless is the right word. I’m a fully capable, educated 27 year old who is helpless. **Sigh** I find this so frustrating. And, helpless in the worst sense in that I cannot help my child when he needs me most.

So, here I am, moving forward. Thank you for all your prayers and encouragement.

Hug your girls a little more for me today, OK?