The End

Its time this blog was wrapped up. Life goes on, and we have to as well. Writing this has been a challenge, & I am sorry its so long.  I am nervous to post this as it makes me feel a bit vulnerable. I am trying to take off the filter and be real. For the most part, I am writing from my perspective. I can’t say how Adrian or Charlie felt, even though it was obviously just as difficult for them.Our emotions have been everywhere these last few months. I understand more than ever what it is to have “a peace that passes all understanding" and I also understand more real fear. God does not change, no matter what our emotions or feelings are. He is always constant. That is a beautiful truth.

                                                      

This is somewhat personal, but before this happened I had been working on being content. I heard a sermon that really convicted me. I was praying that God would help me be consciously content with what had been given to me. To look at what was in my driveway, bank account, closet, home and be content. To hold things loosely. If I am discontent then I am telling God that He has not done right by me. That I deserve better. If I am content with what God has given me, life is so much more joyful and full.

“Not that I speak in regard to need, for I have learned in whatever state I am,
to be content:” Philippians 4:11

Then we were told our four year old had cancer.

I have to be content in this? NOT one of our children Lord. NOT my sweet, sensitive boy. Look how many families are in our circles…why us? The answer is so easy and so difficult. The answer is “why not”? We all deserve it, and worse. I know it’s true, but some days it’s hard to accept. It is a hard lesson to learn. We are still learning, and this only happens through grace.

There are memories that will never leave me. I remember watching Charlie’s left eye move unnaturally the first time I covered his right. I remember smelling Charlie’s hair when Dr. Bouma told me. I remember crying in a way I would have never known was possible otherwise. I could not breathe, I could not think. But yet I was thinking about everything at the same time. Thinking about him being born, of him having to suffer and of having to put him in the ground. Being faced with the very real possibility of losing one of your children is the strongest, most painful mixture of emotions I have ever felt. I am being honest, not melodramatic. You really do think that way. I remember the elation we felt when we got that phone call from our doctor in Toronto. That incredible thankfulness when we heard the word “CONTAINED”! Emergency enuculation had been booked for in two days, radiation treatments were lined up and ready to go. He was over four, had cancer for over two years. It was going to be in his brain. Contained! We were granted what we prayed so hard for. God gave us a miracle. I remember emotionally crashing a few days later. Wait a second…that is his face. I was being fickle, and I was angry at myself for being so weak. Right before the surgery,  I remember having to draw a smiley face above the eye they were going to remove, and then I watched him fall asleep on that operating table with a big grin on his face. And I remember that last day in the hospital. They took his bandage off, and did all the examinations. We were all shaking when it was over. He sat on us and sobbed. Big, deep, awful sobs for a long time. That was the worst day.

For the mountains shall depart And the hills be removed, But my kindness shall not depart from you, Nor shall My covenant of peace be removed, Says the Lord,

who has mercy on you. Isaiah 54:10

Thinking about those few memories, I can really see how God carried us. God does give us more then we can handle. Perhaps it is to show us how weak we are. Or to demonstrate how almighty He is. We could not handle our Charlie having cancer. When we are given more then we can handle, we learn so quickly that we have no control. We have no strength in ourselves. Its all grace. That was a big one for me. Looking back, I think subconsciously I always thought that I would know if something was wrong with one of my kids. As mothers we are connected to our kids, I KNOW my children. For two years I, literally, looked cancer in the eye everyday. I did not see it. All the signs were there. And that shook me. But God knew and He took care of Charlie, and us. There were so many moments where we can see Gods providential hand so clearly.

He shall cover you with His feathers, And under His wings you shall take refuge; His truth shall be your shield and buckler. Psalm 91:4

During was hard. Sometimes I think that the darkest times happened after everything was over. When people moved on, when Charlie was safe.  I really struggled with allowing myself to grieve. So many have it worse. He is perfectly fine now. We have only had a taste. For a small amount of time we thought of Charlie leaving us. That being said, cancer took part of his face and he has to live with that.

We admire the stoic. I know I always did. We don’t like messy. I have learned that being stoic does not mean a while lot. Its all there still. One of my weaknesses is being a brooder. I would hang onto hurts. If there was an insensitive comment about Charlie was going through I would keep it handy in my mind. If I wanted to get angry about something a reason was in easy reach. That was sinful and letting these things go feels so much better. Right now I am so aware of these faults in myself. I am not some sort of pillar.  I also thought that families who have gone through a trial would be different. That they would be so close. After it was over, fuses were short. We got a bit snappy. Charlie turned into a mouthy little monster. Jeanie regressed and un-toilet-trained herself. Clark cried and hung on me. Somehow we smiled our way through Christmas parties, got through new years, even though we did not want to face 2012. We were tired, and we were broken. We were shown how weak and pathetic we are in ourselves. Again, God carried us through and He slowly has healed our little family.

As a father pities his children, So the Lord pities those who fear Him. For He knows our frame; He remember that we are dust. Psalm 103:13-14

This has changed everything, it really has. How we view things. How we parent. Even our house rules changed. To be honest, I do miss before sometimes. Its silly and selfish, but I’m just going to say it. I still miss what Charlie’s face looked like before.
But, we are doing so well. We see simple things as huge gifts. Charlie is signed up for school this fall! He went to his first birthday party last week and was so proud of himself. Spring is coming. All three kids are loving this weather and are playing outside all day. We have one the leading hospitals in our backyard. I have the most steady, supportive husband. We have three beautiful, healthy children. What a blessed life we have, and we stop and actually notice these blessings now. We have so much joy. We are being taught to be content in all things.

And we know that all things work together for good to those who love God, to those who are the called according to His purpose. Romans 8:28

I know I have said thank you before, but I am going to again. You have no idea how your support would lift us up. Thank you so much for loving us and for praying for our little boy. One of the best ways to feel loved is when someone loves your child. Some people who commented on this blog I don’t know at all. I would love it if you would add me on Facebook, if you have it. I’ve learned from you all. If anything, you have taught to me to not forget. To keep those fighting sickness and diseases in my prayers. Send a card. Write a e-mail. Make a meal. Give the gift of simply listening. Love them.

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulations, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God. 2 Corinthians 1: 3-4

I am going to publicly thank a few people. Thankyou to our parents. We are so thankful for supportive, godly parents. You all helped us more than you can know. Thankyou to our siblings. Thankyou to three lovely women. Within two days I either had an e-mail or phone call from each of you. The moms who have lived cancer or tumors with one of their dear children. You all have no idea what that meant to me. You understood my emotions and never judged. Thankyou again to the Boumas, you know you are Charlie’s favorite eye doctor. Thankyou to Charlie’s Sunday school teachers. Sunday school was really a bright part of his week during all this. Thankyou to my two prayer “sisters”, my coffee klutz group and my two “older” kind and wise friends. The pastor and his wife for visiting that first Sunday. I could be here all day. The list goes on and on. People have SO cared for us. The meals, gifts for Charlie, cards and kind words…church family is such a blessing.

I am going to point one person out, and she might not like it. J But Belinda is a wonderful, dear person. I mean this is a GOOD way, she would not leave me alone. E-mail after e-mail. She asked about Adrian and the kids. She never told me what to feel or what to do. She just listened and completely understood everything I was going through in the moment. They have lived those feelings, and much worse. Thankyou for taking the time to care for people you had never met. God knew I needed you. You can find her HERE

As of the writing of this post, Charlie will see the doctors in sick kids every four months a “budding exam”. It’s a exam to check for cancer seeds in his real eye. Every few months we go to the prosthetic eye doctor for fittings or for a polish. We do not know what the future holds for Charlie. We can rest in the beautiful truth that God knows and He is already there. He is held in the palm of our Fathers hand. I pray that Charlie will be an empathetic person. That he will know God and make Him known.

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Jesus Christ. Philippians 4:6-7

We have been gifted children, and their souls are our responsibility as parents. From what I understand about heaven, we believe there will be recognition there. We pray that one day, many years from now, we will meet Charlie again in glory. Where there will be no tears. Where there will be no worries. Where we will see God and praise our Saviour together in perfect unity.

Where the only “imperfections” will be Christ’s hands and side.

And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away. Revelation 21:3

In Christian love,
Adrian & Katie Pennings
Charlie, Laura-Jean & Clark

Some beautiful blogs to read and people to keep in our prayers:
Jack Westerink

Micah

Josh

Please remember the following children and young people from our church in your prayers:
Sweet little Cole, beautiful Avery, Gavin the brave and our dear Postma family.

Eye making 101

Charlie has his new prosthetic eye!

A lot of people have questions about Charlies fake eye. We don't want it to be a taboo subject around here or have him feel shame about it so we are very open.

Adrian, Charlie and I when to Toronto for two days this week to have Charlies first eye made and fitted. We stayed over night in a hotel since there were four appointments in two days. Dad and Mom to himself AND a hotel pool, Charlie was as excited as any four year out would be.

The night before Adrian found the clinic's website and told me to check it out. I am glad that I did, as it saved me from some disappointment later. There were pictures of children with fake eyes on the website, and you can instantly see what eye is fake. I had been picturing and hoping for Charlies face pre-cancer. Even is the eye matches perfectly, there is no way to put "life" or emotion into a fake eye. It was really good that I saw those pictures. We went into it choosing to be happy and thankful for what medical advances COULD do for Charlie. We can not dwell on what he lost.

(This obviously has pictures of eyes, so be fore-warned)

Tools of the trade. Its 50% art and 50% science. These doctors are artists. Its very impressive to watch.

They first took a little black circle and started to paint the iris. They dilute and mix the paint until they are happy with the perfect match.

The reason we had to go in four times was they will not make an eye off of a picture. "We do not make a copy off of a copy" Charlie would sit in the chair beside the doctor and the eye would be held up to his face every few minutes.

Charlie explaining a lego magazine to the doctor. : )

Little model.

The different pupil sizes. The black bits on the bottom is what they paint on and they they snap the round piece over top.

There are only 20 clinics in Canada that make prosthetic eyes. Only 4 of them will deal with children. Kids are hard because they all fight fittings. The doctors have to do a lot of guess work when it comes to the kids. Its hard to get the eyes in and out of kids and the "perfect fit" is next to impossible.

I will not show pictures of Charlie with his eye out. Charlie can decide when he is older if he wants people to see that or not. We thought the empty eye would sag shut, but it actually remains open. The muscle in the eye socket is pulled around that orbit and sewn in place. It looks like the inside of a mouth. When we saw it for the first time there was a few teary-eyed seconds where I thought "Oh, my baby". But then that was gone. I don't know if its possible to not be able to look at your child. He is the same, we love him the same and it is not gross at all to us. Charlie and I have looked at all the close-ups and discussed it. When Charlie asks questions we look though the "eye file" on our computer and it really helps Charlie work through it all.

The fittings were not the greatest. He fought hard and it took Adrian and I both to hold him. Technically, taking eyes and and out does not hurt. But the doctor said it feels weird and kids will automatically close their eyes tight. Then the doctor has to push really hard on his eye area to get it in or out. Charlie has a touch of a black eye today, only because the doctor has to push so hard. Once the kids get used to the idea and understand that it does not hurt, then the doctor can make the eyes fit nicer. The Doctor said "eyes are like a fine wine" (HA). They will get better with time.

After the first fitting they vein the eye. They take something like yarn, shred it, and paint on the fibres.
Again, trying to match his real eye.

Most people think a fake eye is round, but its shaped to fit over the implant (attached to the muscle) perfectly. That way the eye is able to move back and forth a little.

Then they painted the white of the eye to match as well.

And the finished product!

As of right now, you can see that the eye is to big. His socket is still healing and one day he might wake up and the eye looks to small. Everything has to settle still. Its not going to look its best until everything is healed and Charlie knows to relax during the fittings. But for the first time around, we think it looks pretty good!

These eyes cost 2000$ each. And having the moulds made while he is put under cost another 500$. The government covers 75% of these costs and Adrian's work benefits will cover the remainder. We are blessed. There is no set amount of time kids need their eye replaced, as it all depends on how fast they grow and how everything settles. The first prosthetic will last somewhere between 9 months to two years. After that its around two years for children and 5 years once he is an adult.

Adrain and I do not have to touch the eye at this point. I don't think we could get it in and out even if we wanted to right now. We will have be learn all that. Charlie has to go back in 6 weeks so the Doctor can see how things are looking and make adjustments.

The little tool used to remove and place the eye.

Making a joke. : )
Charlie gets to keep his old eyes. This is his temporary prosthetic. The kids are fascinated by it and the three of them have been fighting over a fake eye, of all things, today. It has now been put away for a while. haha.

Its great they give the kids their old eyes. He is very proud to show people.

So that's it. The first round is over. This is Charlie's normal, eyeballs are table talk now.
I am going to wrap up this little blog soon. I'll write one more post soon and then its done.

Thankyou all.

Something blue...

Charlies eye is going to be made this week!! : )

The last appointment went great. It was a really positive experience for all of us. We are so thankful for that. Once he was sleeping they took out the conformer, measured his eye socket, made an impression and returned the temp. prosthetic (its straight again haha) The measuring was all done by the Ocularist. Charlies head doctor (who removed the eye) also went in and checked the eye socket and looked in every corner of his good eye. She said that every time he comes in they will check his good eye. We like that. We met with the Ocularist first and talked for a few minutes just about making appointments and such. He seems like a doctor we could easily have a long term relationship with. We also met with Charlies head doc again and once again she said his other eye looks perfect. His eye socket healed up perfectly. "I don't worry about Charlie anymore, he has graduated". Beautiful words. We have to go in every 4 months for a full eye exam to check for new growths. Then 6 months and so on. I am glad they don't let the kids go too quickly. It was cute, when Charlie woke up he covered his good eye right away. He said with discust, "that  doctor can never just get it right." He does not quite understand that his "new eye" will never see.

Wednsday and Thursday we go to the ocularists' office two times per day. I don't know what they are doing at each appointment, all I know is that we are coming home with a gorgeous, new blue eyeball. We are so excited. If you would have told me three months ago I would be thrilled over a fake eye, well, ...... : ) 

Adrian is planning for us to sleep over. It is going to be fun! I'll admit, maybe its the girl in me, but I am slightly nervous but very interested about all the eye popping in and out that is going to be happening. In a few months Charlie popping his eye out very normal around here. We have been talking a lot about this new eye and I told him he will be able to take it out. He had this huge smile on him face thinking about that, here we go....

So that is where Charlie is at right now.  Emotionally we have been doing wonderful. We are thankful & have peace.

I will post some before and after pics soon.  : )

Red Eye

I was looking through old pictures again and found the pictures that showed Charlie’s cancer from when he was two years old. I have about 8-10 pictures where its clear. It boggles my mind that I thought nothing of it at the time. I would think in passing “the light is reflecting strange”. Its hard not to feel guilty. Its so obvious. Working on that as well… : )

I thought I would show them … the more people who know what this cancer looks like (in pictures) the better. You can see it when the flash on your camera goes off and “red eye” is produced. Its tricky because I have lots of pictures after these ones were taken and both eyes went red. Must be the angle and the fact that the cancer was just starting maybe? This is the very first one I found showing it.
 (sept. 2009)

(Christmas time, 2009)

Anyways, that’s that. Tomorrow we are headed to SickKids again. Charlie is being put under and having his eye socket measured and a mould made. We are all really excited to be starting the process of making his new eye.

Charlie being four:
He learned how to move his fake eye with his finger. He moves it in front of the mirror and thinks it’s the greatest thing. Then he went and got it stuck in the very far corner. Oh brother. We ask him to fix his eyeball. He sighs and tells us in a longsuffering tone of voice, “Dad…Mom….this eye is only plastic. Its ok.”

Emotionally, last week was hard. I’ll spare you the details, but I am finding that after a big upheaval in your life its hard to just settle down afterwards. Even when the cancer is gone, the feelings stay and its easy to feel lost. It really changes you. One hour I would look at his now very cross-eyed face and laugh and the next I will cry. Poor kid. : ) But it will come. We have so much to be thankful for, and we are.
　
God is good. God is always good.

 
Belinda has been such a blessing. Please pray for Micah & his family, tomorrow is scan day. http://www.belindandken.blogspot.com/2012/01/i-am-thinking-about-scan-day.html