I sit down, stare blankly, think of something to write about, come up with a title, stare blankly some more…
And then I do it again the next day, and later again that afternoon…
It’s becoming a habit.
I had wanted to post all kinds of fabulous pictures from all of our fun fall field trips, but there aren’t any pictures. We haven’t gone anywhere fun, unless you count the oncology clinic, which the younger girls might, because they always get a gold coin to put in the gumball-type-machines full of silly little things in parent-proof-fingernail-breaking plastic bubbles. Their favorites are the stick-on fake mustaches. I’m not even kidding. I’m also not really sure if my daughters all wanting mustaches is something I should be concerned about, or if I should just be happy that they’re so easy to please. Kidding. Pretty much.
I’ve read some hard parenting-in-the-storm-of-crisis stories before, and I knew the moment we heard the words “mass” and “brain” used in the same sentence that our lives would never be the same, but I don’t think there is any way we could’ve been prepared for how overwhelmingly overwhelming it all is.
Everything has changed.
It’s such a part of life, change, and I’m such a creature of habit that I don’t always do so well with change, but the more I think about change, the more I hear myself say the word out loud and in my heart & mind, the more the lines of Kathryn Scott’s “Everything Changes” just ring so true, and, well…
Change can be good.
Mercy to the brokenhearted,
Life for those who grieve,
Joy to those whose dreams are stolen,
Imprisoned souls released.When You come everything changes;
When You speak even the darkness hides;
When You step into our frailty, Jesus,
You restore every broken life,
And everything changes.
It does, everything, it changes, and well, that most important change? That once was lost but now am found change? It makes all the difference in the world.
It’s been one of my favorite songs as of late. In fact, the album, I Belong, has been played a lot around here lately. I know, it came out in 2007, which pretty much makes it old news, but it’s recent, and current, for me.
When my heart is breaking, His mercy is there, it sustains & it carries.
He steps into my frailty, and everything changes.
— awkward lack of transition—
If I had a nickle for every time I’ve heard “I don’t know how you do it…”
I try to be quick with the truth- it’s all Him, all His grace…
Sometimes the encounter is so fast, and the words come too slow, or not at all, and afterwards I feel so convicted because the last thing I want is for someone to have the impression that I am anything resembling the word awesome. Really I want people to know that His grace truly is sufficient, and that is why and how I can manage to appear to be handling it all…
This past week was another hard one, with Ian being back in the PICU. It’s heartbreaking to see him in so much pain. It’s frustrating to hear “we don’t know why”, “you’re a mystery”, “your case is puzzling”, from doctor after doctor. It’s nerve-wracking to not know what to do next.
God is still on the throne, and He is still a God of love, and we may not understand any of the why?s lately, but we don’t have to.
We can simply trust Him, and we do.
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{ 16 comments… read them below or add one }
Ali,
In so many ways, I can identify. Though our situations are very different (our 16yo. son’s sudden, unexpected death), I have heard many of the same things you have. I’m so sorry. Continuing to pray. I can honestly say that God has been good to us and I know He is to you as well. Lean hard on Him. Thanking God for the ministry of music, too! With prayers…
Still thinking of and praying for you and your family often. It breaks my mom-heart every time I think of what you’ve been through, but I have been so encouraged by the grace and strength that you have shown as you walk your hard road.
Praying extra peace and comfort for you, that only He can give, as you go through the rest of this holiday season without your precious boy… (((hugs)))
I have no words, just love and virtual hugs. I hate those words puzzling and mystery when it comes to medicine. Grrr.
Thank you… love and virtual hugs can go a long way!
Hi Ali,
Hoping and praying God gives the doctors wisdom as to how best treat Ian for this pain.
Praying,
<
“I knew the moment we heard the words “mass” and “brain” used in the same sentence that our lives would never be the same”
I can relate to this. Not my child, but my husband. We began this thing I call the Uninvited Journey on Tuesday. Preliminary results say it is not cancer, I just pray that the second opinion confirms that. I will be praying for your son, that the doctors receive downloads of wisdom from the one who created your son that he would no longer be a puzzle to them. He is certainly not a puzzle to his maker. Praying for you as mom, caregiver, manager of all things medical, emotional, familial and financial…so many roles, so much to think about. There are no words, really, are there?…just….praying….
Uninvited Journey, yes, not only were we not invited, but we weren’t given a choice at all, were we? We simply have had to walk this journey, together with our loved ones, no matter where it takes us… but we do not walk it alone!
Yes, thank you for the reminder that our Ian is not a puzzle to the One who made him!
Thank you for your prayers, you have mine as well…
prayers for your Ian, and for your whole family. itsnt it wonderful to remember that when we know we cant go one step further, the Father is holding us up, and He is the sorce of all of our strength! i do not know why, i do not know whats in store for you all, but I KNOW we serve a Mighty God. <>
I am so sorry for all that you are going through. Praying for Ian tonight!
Hello Ali,
I also have spent the better part of the last two years in hospitals with my now 20 year old son who is being treated for brain and then spinal cancer. I too have sat down to write on a website where friends and family anxiously wait for my updates , and can not think of anything positive to say because my baby is laying in a bed suffering from the horrible effects of the treatment that will save his life. We weather the storm, know that a better day will come and give our babies strength….. I also have heard countless times, “I don’t know how you do it” my response is alway, “I wasn’t given a choice, if I had been I certainly would have said NO!” I pray for your family, for Ian and that his doctors relieve his pain.
Brenda
I’m so sorry for all that you & your son have had to endure. I hate that we can understand these things about each other, I’d so much rather have something fun in common, kwim?
I have been praying for you and your family as you travel down this difficult road.
Hugs,
Ruth
Ali, I have been reading Ian’s story and my heart has broken for you, I know all too well the struggle and the helplessness that mass in the brain, Medulloblastoma…. PFS brings. I am praying for Ian. Do you belong to the Pediatric Brain Tumor Yahoo Group? I am only on it very rarely but I know they are a wealth of info and there is a Medulloblastoma group and a Cerebellumutism group which deals with PFS. I am not sure if there is anyone in the ped. brain tumor group who has a child who has experienced similar symptoms to Ian but it would be worth asking. I am praying for your whole family as it impacts the whole family.
I just emailed you! Sending continued positive thoughts and prayers your way.
We pray for your beautiful every day. After our morning Bible study, we lift up our prayer list to God and His mighty hand, and there is not a day when the children do not remember Ian, yourself, and your family.
Life is full of intricacies and only God has the capacity to understand these things. Just put your trust on Him because He surely has plans for your family. It is indeed heartbreaking to hear about Ian. If science cannot fathom Ian’s condition, the only thing left is entrusting our faith on Him because He certainly knows.