I was talking to Richard the other day and mentioned how amazed I am at the sense of peace that we have had these past few months. I've been following several other DIPG families as they fight for their childrens' lives. Some are still fighting and some have passed into eternity. It somehow seems strange to me that we don't seem to be struggling with the depth of grief that some of them are. Some are lashing out at God and those around them. Some are struggling with guilt over things they said and did. A few are almost paralyzed with grief and fear that the same thing may happen to their other children. I have only seen or read about a couple whose experience seems to mirror our own and it is very evident in their writings that they (like us) have a very deep, abiding, loving relationship with Jesus Christ.
One of the mom's (Bonny Dales) wrote:
The gap that Roan has left behind is sometimes too hard to bridge, all we can do is pray for healing, strength and a continued faith that God has not let us fall and will continue to hold us in the years to come. This is a life sentence, although I could understand how some parents may see it as a death sentence. It is a choice we make - to get up everyday, to choose to see the world in a good way, to choose gratefulness over bitterness or jealously.
Now, I'm not implying that any of the others do not have a relationship with Christ or even knocking the stage or level of grief they are experiencing. I know that everyone grieves in different ways, at different stages & at different times. I would never dare presume that I am doing anything any better or worse than another grieving parent. However, I am humbled and amazed at the strength we have been given through Christ.
Philippians 4:13 (Amplified)
I have strength for all things in Christ Who empowers me [I am ready for anything and equal to anything through Him Who infuses inner strength into me; I am self-sufficient in Christ's sufficiency].
I draw on that strength on a moment by moment basis. There are times that I feel overwhelmed and wonder how I can face the day. Then I think about what Caleb endured during those long 5 1/2 months of treatment (and even the few months before diagnosis) and realize that I have to shake off the despair that seems to overshadow me because he would not want to see me like that. Every time he saw me cry, he would reach over, give me a hug, wipe the tears from my eyes and say, "It's okay, Mommy. I'm here. You're going to be okay." His love was apparent in everything he said and did, but was still just a shadow of the love of Christ. I know that Christ holds me in His arms and whispers, "It's okay, Angel. I'm here. You're going to be okay."
When Caleb was first diagnosed, Richard and I determined that no matter what happened, we wanted God to be glorified in all of it. We made a conscious decision that we would not walk in guilt or regret over things we did or said before his diagnosis or even things we didn't do. We chose to rejoice in the Lord and turn our cares over to Him. We praised Him for the small and the large things. I can honestly say that we were even able to praise Him when Caleb passed away, because we know that Caleb is in the presence of God and is no longer in pain. We thanked Him for everything -- the staff we interacted with, the other families we met, for Caleb's complete and total healing. We sought after God with our entire being because we couldn't imagine going through that storm without Him.
Philippians 4:4-8 (Amplified)
4 Rejoice in the Lord always [delight, gladden yourselves in Him]; again I say, Rejoice!
5 Let all men know and perceive and recognize your unselfishness (your considerateness, your forbearing spirit). The Lord is near [He is coming soon].
6 Do not fret or have any anxiety about anything, but in every circumstance and in everything, by prayer and petition (definite requests), with thanksgiving, continue to make your wants known to God.
7 And God's peace [shall be yours, that tranquil state of a soul assured of its salvation through Christ, and so fearing nothing from God and being content with its earthly lot of whatever sort that is, that peace] which transcends all understanding shall garrison and mount guard over your hearts and minds in Christ Jesus.
8 For the rest, brethren, whatever is true, whatever is worthy of reverence and is honorable and seemly, whatever is just, whatever is pure, whatever is lovely and lovable, whatever is kind and winsome and gracious, if there is any virtue and excellence, if there is anything worthy of praise, think on and weigh and take account of these things [fix your minds on them].
We have come to more fully understand the peace Paul talks about in his letter to the Philippians. It's so very hard to describe it, but very tangible to us. We choose daily to think on positive things to keep us close to the presence of Jesus.
That doesn't mean that we don't have times where we totally lose it. For instance, today marks exactly 7 months since Caleb passed, so it's a bit of an emotional day already and I've been trying to keep myself occupied. In today's mail was a letter addressed to Caleb from the dentist reminding him that his dental check-up is "now several months overdue." I started to cry and then got angry at the dental office for sending that stupid letter. I thought to myself, "That's because he's been dead for 7 months as of today. I've told you several times that he's dead and asked that he be removed from your system. What more do you want -- a copy of his death certificate?" I allowed myself to rage for a couple of minutes then turned it over to God. I sought refuge in my Savior's arms. I told Him how much it hurts to receive mail for Caleb from people who already know he's gone. It's difficult enough from people who don't know, but it's a little worse from people who do. I took the letter to their office, spoke gently to the office manager and again requested that we not receive any more mail for Caleb. I teared up again, but remained calm. She apologized, took care of the situation, and I left.
There have been times when I'm alone that I cry out to God. "I don't understand why this had to happen. I want my baby back. What is Your plan to make something good from this?" I'm not mad at God, but the situation and still I yell. I cry. I scream. I know God can handle it. He knows my pain better than I do. He has experienced loss on a much greater scale than I can ever imagine. I let Him calm me down and give me peace in the midst of the tempest. And I know that whenever I need Him to do so, He always will.
Caleb is always in our hearts and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard & Caden