Sunday, September 20, 2009

A Letter from Sondra, Orion's Mama

You may have seen some of the blog posts I wrote a few weeks ago about Orion. They are here and here.

Here is a letter from his mama. I love her so much.

A letter from Sondra.

Dear friends,

My family and I can never say enough to express how grateful we are to all of you. Thank you for being there for us and helping us in so many ways.

Orion’s tumor appeared so suddenly and grew so quickly it has often felt unreal. Talking to other parents whose children have had DIPG, he had the symptoms in one weeks time that they had over months time. In the one month since he was diagnosed, he’s gone from a healthy 4 year old--to where he can only move the leg and arm on the left side of his body, and occasionally nod his head yes or no. He is currently undergoing radiation, and that at least has slowed things down so that he is not getting any worse. And we are hoping that he will regain some of his motor skills. Still, God has blessed us that he isn’t in any pain. He often gets frustrated because of his inability to move or talk or eat like he used to, but by asking him and getting yes or no head nods, he has several times confirmed that nothing hurts. It is an extremely aggressive tumor, so everything is happening very quickly.

I pray two main things over and over. One, that God, who is able to do all things, will see fit to grant us a miracle. There is no question that if he were to recover it would be one. It would be awesome to have that witness to God’s power for Orion to share with everyone the rest of his life. But God does not always answer prayers the way we expect. He gives us all that we need, if not always what we want. Also, if God finds Orion so precious that he wants to take him home sooner, then at least I know Orion will be well, and happy there with Jesus. We will miss him if that is the case, but I hope it will be a motivator for us to live for Christ that much more, so that we can meet him again with out any regrets.
One night Orion asked me something to the effect of ‘why daddy was mad at the doctors saying he was going to die‘. I explained that we all die eventually. I said that it wouldn’t happen right “now” but that when it did, he would get to go home to Jesus. That everything was wonderful there. He would have fun and not be sick, and happy all the time. Orion said, “But I like this home.” And I agree. I know that it will be wonderful when we make it to Jesus’ side, but I am enjoying the time with Orion now. I told him I was glad, and we are going to keep him here as long as possible because we love being with him, but when we do get to heaven, we’ll like it, and have lots of fun there as well. A few days before he had told me he wanted to get back to “normal.” And if God does take him home, then at least Orion will be freed to laugh and run and play again. Yet, I’m selfish. I want to see who he’s going to grow in to. I want to see him laugh and play and grow here. I want more time. Orion was the child I fought for. I wanted 3 children, not only 2. I wanted to have a unique name for him--and talked my family into “Orion“ So that they could call him the ordinary “Ryan,” But I would know that he was to be my dreamer. Reaching for the stars and hunting for his dreams. I wished for him to do great things, and have his determination carry him far…. I wanted to have a natural birth and so switched hospitals, and found a midwife in order to avoid surgery. I wanted to stay at home with him and his brother and sister as long as possible. He was so bright, I was always amazed at the things he came up with. I wanted to teach him about God, and help him become a wonderful young man. I want to keep him. But I realize how selfish all these “I wants” are. What SHOULD be more important is what God wants.

So I pray, He is yours God. Give me the spirit of Abraham, to be able to give back to you what was yours in the first place. Help me overcome my selfishness and to acknowledge that he is yours, not mine. I hope for a miracle like you granted Abraham, but he did not have any guarantees, and went to give Issac back without any guarantees, fully believing that God knew what was best. He is yours Lord. And just as I hope for the miracle, I pray that you give me the spirit to accept whatever your answer may be. That I be strong enough to guide my children and support my husband through whatever comes our way.
That is my second main prayer, that whatever the future may hold, that our faith grow stronger and we grow closer to the Lord. I’m terrified of this turning family members bitter. I want us to continue to see the blessings that surround us, and not let our grief and loneliness overwhelm us.

In the midst of all of this, we have been continually amazed at the outreach of the Lord’s family. The church truly is his hands and feet, and you have reached out to us is so may ways. We’ve received gifts of toys which Orion enjoyed when we were in the Dallas hospital. Blankets, which have been awesome. He doesn’t like the hospital blankets, so I trade out and wash one of the comfy blankets we’ve received every day. Money, which has helped in many ways. It has helped us get our vehicles running so that we could go back and forth to the hospital and let his brother and sister visit often. It also gave us the opportunity to let Ben and I be there for Orion as much as possible with out losing our home or having the utilities cut off. It has helped us get the gas to go to temple and back so that Kaitlyn and Kevin can keep in touch with us and have as much time with him as possible. And as we continue to look for treatments to extend the quality of his life, it has given us peace of mind that if we want to try a particular supplement to boost his immune system, or other wise, we can actually afford to by it. So many people have sent cards and letters letting us know how much they care and are praying for Orion, and for us. Meals have been brought to the hospital so that we can get a break from “hospital” food, and enjoy real cooking. My brother brought a beautiful prayer book put together by his class where we could read what each person was specifically praying for us. Friends and family have stopped by to visit and lift our spirits. And by family, I am including our Church family, because that is what we are in Christ, a family. Relatives that I didn’t know before this, both by blood and by spirit, have come by with food, gifts, and most importantly, prayers. We’ve received calls, letters, and emails from people we haven’t seen in years--and from people that we didn’t even know before. We never expected such an outpouring of love. And so we say, Thank you. I can truly feel Jesus’ spirit in all your actions. I can see him in you, hear him in your voices. You’ve brought comfort just by caring. Thank you. Thank you. Thank you. Whatever the Lord has planned, whatever may be the outcome, we are blessed.

A few more things that I’ve reflected on, and then I will wrap this up. I always thought about Jesus’ sacrifice, but I never really understood what the Father was giving up. When this first started, I remember praying, “Don’t let him be in pain, don’t let him be alone.” And then I realized, God the father, had to willingly leave his son in pain and alone. And for what? For those of us that forget, and take for granted. Jesus suffered greatly, but now I realize just how much the Father must have hurt too. How many other parents have also thought, “if only it could be me instead. If I could take this upon myself I would. And yet we don’t have the power to do that, to stop it. Yet God the father had the power to stop his son’s suffering. And chose to let him go through it because of his great love for ALL. Words can never give justice.

“This world is not our home.” How easy that is to forget. Whatever we face here, good or bad, IT IS TEMPORARY. We get so caught up in our day to day, it is had to see the bigger picture, that in the end, none of this will last, only how we treat people, and how we worship God will matter. We are like campers, hiding in tents in the woods, who have a beautiful home waiting for us. But we get so focused on day to day survival, that we completely forget that the home is there, just outside the woods. We spend so much energy making our tents nice, when it’s just a tent. We have a much better home waiting for us than anything we can put together here. I pray that God help me to always remember that, and live looking towards that time, instead of hiding from it.

Again, thank you for all of your gifts, your love, and most importantly your prayers.
With love,

Sondra Smith

1 comment:

Treehouse-Dweller said...

Wow. I truly admire Sondra's faith. Whatever happens, I am certain that her family will be brought closer together-and closer to Christ- through this trial. I am so glad to read that Orion is not in any pain. I will continue to keep he and his family in my prayers!