Two Camps

In conversation with a dear friend lately about being an SMA family, she remarked that we as a group tend to be divided into two camps: those who chose the palliative route and those who chose a more aggressive treatment route. I hadn't really thought of it much, to tell you the truth. I've made no secret here that I have deliberately avoided the "SMA culture" and whether that is good or bad I make no judgment. It just is where I'm at right now, and if it needs to change, I trust God to move in my heart.

Making the decision on the best care for your child and your family is an incredibly difficult one. I believe we were encouraged to consider the palliative route, but I also believe that was out of experience and much consideration of the alternatives. If we had chosen a more aggressive route, we would have had support for that as well. I believe the medical team we worked with had a great respect for the decision. If you asked me a year or two ago if I would have liked to consult with families before we made our decisions who had experience from each alternative, I would have said yes. Now I'm not so sure.

My observations over the years when I have come across similar situations with different outcomes is that those who have chosen a more aggressive treatment route believe they are fighting for their children and have often already decided that those who chose palliative care gave up on their children. That they were selfish, not wanting to care for a high-needs child, or put their families through difficulty. That it was easier to let their children die. As if they had no more relationship with their child than the family pet.

On the other hand, if we are being honest, how often have we who chose palliative care for our children wondered if those who have pursued a more aggressive, round-the-clock treatment for their children had taken everyone's best interests at heart. The demands of caring for a fragile, terminally ill child can take a heavy toll on those in the family who are not prepared for the long haul.

Before you stop reading and start writing me a scathing response, hear me out. Neither judgment is fair. Why do we even have these two camps? Why is there not the respect for each family's individual decision made in the context of so many things you will never be able to fully know? Friends, those of you who are selflessly caring for your beautiful children with SMA around the clock, I applaud you. You knew what the right path was for your child and you took it, knowing that it would not be easy. Companions, those of you who gave your children with SMA as much love as they could take while still here on this earth and then bravely let them go when it was their time, I applaud you. You knew what the right path was for your child and you took it, knowing that it would not be easy.

I felt condemned for a long time, by myself and others, when I would hear of children with SMA living long past the average, but with great cost and sacrifice. Did I give up too soon? Was I selfish? I had to let that go and come to peace with the decisions we made and the care we provided, or it would have eaten me up like a cancer. I believe with my whole heart that we did the right thing for our children, just as you believe you are doing the right thing for your children. We can't make a judgment on which camp is right. God's will for each family is going to be different. But we could start supporting each other and work together toward the common goal of finding a cure for this horrible disease.

The Goodness of God

Recently, I was given an opportunity to speak to the mom's group at my church. I chose to share some of my story and what I've learned about the goodness of God. This is what I wrote in preparation - I wanted to share it here as well:


3 years ago, almost to the day, I stood on my back step with my baby girl and prayed to God that His will be done – and probably meant it for the first time in my life.

What I want to share with you today is some of my experience with the goodness of God. I don’t know about you, but I seem to need to learn my lessons the hard way. And for those of you who don’t know my story, I’ve been through some hard things in the last 3 years.

I am a mother of 4. I have Sabrina, my oldest, who is 8, and you all know Zoe, my youngest at 8 months. I also had twins 3 years ago who died at 4 ½ months and 6 ½ months.

Nicholas and Olivia were born on July 18, 2007, on my husband’s birthday. I didn’t know I was carrying twins until my 20 week ultrasound. I had suspicions because I was so big so early, but it was my second pregnancy and the midwife had only heard one heartbeat so far. We found out at the ultrasound that their heartbeats were synchronized. The technician was looking around a bit, then stopped and said, “Hm. What do you see here?” It was a while since I had had a prenatal ultrasound, so I thought I was seeing a baby. She said, “That’s two heads there.” Horrified, I said, “On one body??” She quickly reassured me that there were two babies.

And so our journey began. I had a good pregnancy, went right to the end, even had to be induced because I was so big I couldn’t stand it anymore. Life with two babies was very challenging, but I loved it. Nicholas was a dream baby – content, rarely cried, slept a lot. Which was helpful in taking care of Olivia – she was colicky and needed a lot of attention. She was so tiny; I think she felt she needed to fight to make sure she was getting taken care of.

We were concerned about Nicholas. At six weeks he was quite floppy, couldn’t hold up his head, and it was getting harder and harder to feed him. He was admitted to the Children’s Hospital for a few days at the beginning of September for a variety of tests. We were told that they suspected he had Spinal Muscular Atrophy Type I and wanted to confirm with a blood test. We were told we would probably only have a few more months with him. SMA is a genetic condition where the cells along the spinal cord do not regenerate, resulting in muscle weakness, difficulty swallowing, and eventually respiratory failure. It is the #1 genetic killer of infants. And all this was going on right around Sabrina’s first day of school. I remember having to leave Nicholas at the hospital so I could see her off on this important day.

What do you do after that? Have you ever had a dream broken so hard that you can feel and hear it shatter right in the center of you? We went home, sought the Lord in prayer for Nicholas’ healing, and carried on with life as we knew it. I refused to believe that God would let Nicholas die. I was firm in my belief that he would be healed, and did not read any materials on SMA or speak to families with SMA. I held on tight to my big miracle, and did whatever I could do to make Nicholas comfortable as his weakness progressed.

Just after Sabrina’s 5th birthday, Nicholas took a turn for the worse. I drove him to the emergency room in the early hours of November 2nd, praying he wouldn’t die in his car seat on the way there. He had a collapsed lung but was stabilized and admitted to a special care wing. He was only there for a couple hours before he crashed again, with the other lung collapsing and was taken to the intensive care unit. This is where the doctors started to talk to us about orders to not resuscitate and “comfort measures” (which I didn’t know then, refer to palliative care). I had no idea why they were talking to me about these things – I knew Nicholas was going to get better. They realized that I was not following what they were saying and started on a treatment plan to try to get him well enough to come home. After about a week in intensive care, Nicholas steadily improved enough to be taken back to the special care wing, where we worked on a plan to get him well enough to bring him home.

Oh my little boy was such a trooper. He fought and smiled and was the darling of the special care wing. I spent my days at the hospital and evenings at home with my girls.

By the end of November, Nicholas had no fight left in him. The doctors pulled us aside and asked us to consider taking him off of supported breathing. I couldn’t believe we had to give up but one look at him and we knew that we had put him through enough. We spent a peaceful afternoon saying goodbye to our little boy on November 27, 2007 and his spirit left us while I held him in my arms.

I still thought that my miracle was coming. If God let him die, then maybe he would raise him from the dead. But as time went on and we took care of his little body I knew that the miracle I was expecting was not going to come. I was desolate. We went home to our girls, exhausted.

Which brings me back to where I started my story this morning. A week after Nicholas died, I was spending my first alone time with Olivia in a long time. I realized that for a 4 month old baby, she didn’t do much. She couldn’t lift her head, wasn’t kicking and moving around, and wasn’t even attempting to roll over. I was sick as I realized that she had SMA too. I called my husband and the pediatrician and bundled Livvie up to take her to the hospital to confirm what I already knew.

I stood on my back step, about to take my baby girl back to the same place I just left, and the only thing I could do was give up. I said to the Lord, “Your will be done” and meant it for the first time in my life. I was too tired, too heartsick to fight any more for what I wanted. I needed God to take over because I had nothing in me for this. I had been to the abyss and back already and hadn’t been destroyed yet. God had to carry me through this or I would surely die.

Olivia was confirmed with a clinical diagnosis and had the blood test as well. We stayed overnight that night, and took her home the next day, but we were back within a couple days when she started to experience respiratory troubles. The special care unit staff told me later that seeing us come back with another baby to their unit was the hardest thing they had ever seen. And they have seen a lot of hard things. We didn’t put Olivia through all the things we put Nicholas through. We made her comfortable and were able to bring her home during the daytimes. She came home for Christmas and we celebrated it with her and all our family. Early in January, Olivia succumbed to respiratory failure and we said goodbye to her on a cold winter morning, just as the sun was coming up on January 12, 2008. Her spirit left us while she was snuggled in her daddy’s arms. Again, we went home empty and desolate.

I wanted to share with you today some of what I know about the goodness of God. The biggest thing I learned through all this is that God IS who He IS regardless of what is going on in our lives, and what saved me from complete destruction is devoting time to finding out who this God really IS.

14 And God said to Moses, “I AM WHO I AM.” And He said, “Thus you shall say to the children of Israel, ‘I AM has sent me to you.’” Exodus 3:14

You see, I had entered into this journey with the mistaken belief that I had earned my salvation. Why was this happening to me? I studied the Word, I prayed every day, I was involved in a church. I was supposed to be protected from this stuff! What God has been doing in the last three years is tearing down the lie that I can (and need to) earn my salvation. God never promised that things would be easy, in fact there are many places in His Word that tell us to expect difficult things, but He did promise that He is good. And He challenges us to try Him out and see.

“Oh, taste and see that the LORD is good;
Blessed is the man who trusts in Him!” Psalm 34:8

“3 Blessed be the God and Father of our Lord Jesus Christ, who according to His abundant mercy has begotten us again to a living hope through the resurrection of Jesus Christ from the dead, 4 to an inheritance incorruptible and undefiled and that does not fade away, reserved in heaven for you, 5 who are kept by the power of God through faith for salvation ready to be revealed in the last time.
6 In this you greatly rejoice, though now for a little while, if need be, you have been grieved by various trials, 7 that the genuineness of your faith, being much more precious than gold that perishes, though it is tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ, 8 whom having not seen[a] you love. Though now you do not see Him, yet believing, you rejoice with joy inexpressible and full of glory, 9 receiving the end of your faith—the salvation of your souls.” I Peter 1:3-9

“2 My brethren, count it all joy when you fall into various trials, 3 knowing that the testing of your faith produces patience. 4 But let patience have its perfect work, that you may be perfect and complete, lacking nothing.” James 1:2-3

“12 Beloved, do not think it strange concerning the fiery trial which is to try you, as though some strange thing happened to you; 13 but rejoice to the extent that you partake of Christ’s sufferings, that when His glory is revealed, you may also be glad with exceeding joy.” 1 Peter 4:12-13

I knew deep in my spirit that there was no alternative to God. You know, how you just know something? So in my sorrow I needed to find out what kind of God was this that I served that would give me the abundance of twin babies then take them away from me one by one. I still don’t know the answer to that one. But in all that I’ve learned about God since then I’ve decided that if He hasn’t revealed it to me then I don’t need to know right now.

“21 Peter, seeing him, said to Jesus, “But Lord, what about this man?”
22 Jesus said to him, “If I will that he remain till I come, what is that to you? You follow Me.”” John 21:21-22

“8 “For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the LORD.
9 “As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.” Isaiah 55:8-9

But after all this what He did reveal to me is that it isn’t finished yet.

Have you ever tasted cookie batter before you put in the sugar? What if someone came in to the kitchen while you were making cookies, tasted your batter and told you it was terrible? You, knowing the full picture of what was going to happen, would tell him that it isn’t finished yet. That’s the truth I lean on when things around me look hopeless and taste terrible. It’s not finished yet. God has a plan, and it’s a beautiful one. But it’s not finished yet. Or better yet, it is finished from Jesus’ perspective, but we’re still in the middle of the story.

11 “For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope.” Jeremiah 29:11

28 “After this, Jesus, knowing that all things were now accomplished, that the Scripture might be fulfilled, said, “I thirst!” 29 Now a vessel full of sour wine was sitting there; and they filled a sponge with sour wine, put it on hyssop, and put it to His mouth. 30 So when Jesus had received the sour wine, He said, “It is finished!” And bowing His head, He gave up His spirit.” John 19:28-30

I went through some hard things with my babies, and I have some hard memories. But I also have some amazing memories too. God was with me in such a strong way during that time that to even hear a worship song from that time will move me to tears with remembering the fullness of His presence. The Word says that He will carry your grief and sorrow, and friends that is the absolute truth.

3 “He is despised and rejected by men,
A Man of sorrows and acquainted with grief.
And we hid, as it were, our faces from Him;
He was despised, and we did not esteem Him.
4 Surely He has borne our griefs
And carried our sorrows;
Yet we esteemed Him stricken,
Smitten by God, and afflicted.
5 But He was wounded for our transgressions,
He was bruised for our iniquities;
The chastisement for our peace was upon Him,
And by His stripes we are healed.” Isaiah 53:3-5

1 “The Spirit of the Lord GOD is upon Me,
Because the LORD has anointed Me
To preach good tidings to the poor;
He has sent Me to heal the brokenhearted,
To proclaim liberty to the captives,
And the opening of the prison to those who are bound;
2 To proclaim the acceptable year of the LORD,
And the day of vengeance of our God;
To comfort all who mourn,
3 To console those who mourn in Zion,
To give them beauty for ashes,
The oil of joy for mourning,
The garment of praise for the spirit of heaviness;
That they may be called trees of righteousness,
The planting of the LORD, that He may be glorified.” Isaiah 61:1-3

I can remember feeling so sheltered, so shielded, so protected and that was only by the grace of God. He knew what we had to walk through and showed Himself able to carry our grief and our sorrow so we could walk through it and remain whole. Not only whole, but better! I can say that I have never been happier in my life, and that is through the power of the Word in me. The Word works, my friends! You’re going to need to come to the point where you either choose to believe the Word or not. Is God who He says He IS?

There are some of you here today that have hard things in your life right now or hard things coming up that you think you should be protected from. And you are! But maybe not in the way that you are expecting. I challenge you to ask God for a new perspective on that hard thing in your life. He loves to answer prayers like that. He tells us over and over in His Word to trust Him. But I have learned that you cannot trust what you don’t know. Taste and see that the Lord is good! Seek to know Him as He really IS and discard the things that you have believed about Him that aren’t truth from His Word.

It took me two years of learning about who God IS to trust Him when He told us to try again for another baby. Corrie and I are both genetic carriers for SMA, so any child we conceive will have a 25% risk of having the same genetic condition Nicholas & Olivia died from. We knew we had to do something or spend the rest of our lives here on earth in the hell of self-protection, trying to keep ourselves from being hurt again. God told us to walk by faith, and not by sight, and so we did.

“1 For we know that if our earthly house, this tent, is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. 2 For in this we groan, earnestly desiring to be clothed with our habitation which is from heaven, 3 if indeed, having been clothed, we shall not be found naked. 4 For we who are in this tent groan, being burdened, not because we want to be unclothed, but further clothed, that mortality may be swallowed up by life. 5 Now He who has prepared us for this very thing is God, who also has given us the Spirit as a guarantee.
6 So we are always confident, knowing that while we are at home in the body we are absent from the Lord. 7 For we walk by faith, not by sight. 8 We are confident, yes, well pleased rather to be absent from the body and to be present with the Lord.”
II Corinthians 5: 1-8

And God was faithful. We named our miracle Zoe Grace, for in the step of faith we took in bringing her in to our family, she brought us new life, abundant life.

10 “The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly.” John 10:10

Would I be here speaking to you of my happiness if God hadn’t given us another healthy baby? Yes. Maybe our reward wouldn’t have been Zoe but it would have been something else that would have been just as wonderful.

7 “Instead of your shame you shall have double honor,
And instead of confusion they shall rejoice in their portion.
Therefore in their land they shall possess double;
Everlasting joy shall be theirs.” Isaiah 61:7

6 “But without faith it is impossible to please Him, for he who comes to God must believe that He is, and that He is a rewarder of those who diligently seek Him.” Hebrews 11:6

God tells us over and over He wants to give us the desires of our heart.

4 “Delight yourself also in the LORD,
And He shall give you the desires of your heart.” Psalm 37:4

But we also have a responsibility to seek Him in showing us what the true desires of our heart really are. Only God can discern the thoughts and intentions of the heart. We think we know what we want, but no one knows us better than our Father.

9 “ The heart is deceitful above all things,
And desperately wicked;
Who can know it?
10 I, the LORD, search the heart,
I test the mind,
Even to give every man according to his ways,
According to the fruit of his doings.” Jeremiah 17:9-10

12 For the word of God is living and powerful, and sharper than any two-edged sword, piercing even to the division of soul and spirit, and of joints and marrow, and is a discerner of the thoughts and intents of the heart.” Hebrews 4:12

I could talk all day about the things I’ve learned about God, but what I want to leave with you today is that God is good because He says He is. There are things in our lives that aren’t good, some of them are our fault, and some of them are not, but He has also promised that Jesus would redeem them all. How great is that?


So here are some tips for a busy mom to get a daily dose of the Word, that truth about God that will sustain you through all the storms of life:

• Sitting down and reading your Bible may be obvious but is not the only way to the Word. Television and internet ministries are a great source to hear the Word while you are trying to get things done.
• I’m actually an auditory learner and I didn’t make a lot of headway in my Christian walk until I invested in teaching on CD. Joyce Meyer has been one of my favorites, but Charles Stanley, Chuck Swindoll, and Kenneth Copeland are fantastic too and all are on radio, TV, internet, and Podcast.
• I would download the podcasts and CD’s on my iPod and listen while on the bus, going for walks, and cleaning the house. There’s also a great podcast called the Daily Audio Bible that takes you through the Bible in one year.
• Reading books about Biblical topics that quote the Word count too. There are many concepts that I only really learned through reading authors like Philip Yancey and CS Lewis.
• Let’s not forget Christian fiction. Francine Rivers allowed me to visualize what godly relationship should look like and helped me to understand a new perspective on God’s love. The Circle Trilogy by Ted Dekker is an incredible allegory of how Christ came to save us from sin.

I’m not saying that you don’t need to read your Bible, because you know you do! But don’t make it a law that “thou shalt sit down with thy Bible”. Seek to get the Word in you every day in any way you can.

The Word for the Day

For the LORD will comfort Zion,
He will comfort all her waste places;
He will make her wilderness like Eden,
And her desert like the garden of the LORD;
Joy and gladness will be found in it,
Thanksgiving and the voice of melody.

Isaiah 51:3

Remembering Olivia

It's hard to believe it's already been 3 years since your spirit left us early on a cold winter morning. Olivia, I really would have loved to see you grow up. You were so much personality put into one tiny little package! It's been a consolation that you and your sisters look so much alike but it's just not the same here without you.

Sweetheart, know that you are missed and cherished dearly in our hearts. I look forward to the day when we can all be together again - what a wonderful day that will be!

Happy New Year!

Just as predicted, 2010 was a year of big changes and big blessings for our family. We started the year by declaring that we were going to "trim the fat" in a number of areas, and I'm happy to report that we were successful! So successful that we want to continue to get better and better at it.

Our biggest blessing of the year, of course, was the arrival of our Zoe Grace on March 25. She has been a delight right from the beginning, a true gift of God's goodness. She was tested for SMA at birth and 9 long weeks later we received the joyous news that she is healthy! She is truly "life abundant". I have enjoyed this maternity leave so much! I connected with the Mom's Group at my church, accomplished some projects around the house, invested more time in Sabrina, and oh yeah, spent a whole lot of time with the happiest baby ever.

The biggest change of the year was Corrie's move back to MPI and selling his tow truck. After 6 years of being self-employed, he took a term position as a driver examiner "just for a couple months" and is now permanently employed as a tow truck operator for the salvage compound on Plessis. He gets to drive a brand-new tow truck and get paid for it!

The biggest project of the year was our attempt to sell our house and move to Neepawa. A move to a country setting has been on our hearts for a while, and shortly after Zoe's birth we thought it was a good time to try. We finally decluttered and organized the basement, and completed the projects around the house that we had been putting off. After a month in a hot market with only one unsatisfactory offer, plus a number of other roadblocks that came up, we realized that God was telling us it wasn't time yet. So, we settled back in to making a life for ourselves right where we are.

We were able to spend more time with family this year too. There were a number of trips to Neepawa, with me being on mat leave, and one big road trip to Kelowna with our truck and camper. We took about 5 days to travel there, stayed there for about 7 days, and took 5 days to travel home, camping all the way there and back. It was wonderful! And a very good time to reconnect together as a family and with Corrie's family in BC.

We're looking forward to what 2011 will bring. I love the passage in Isaiah 61 that speaks of the good news of the coming Saviour:

"The Spirit of the Lord GOD is upon Me,
Because the LORD has anointed Me
To preach good tidings to the poor;
He has sent Me to heal the brokenhearted,
To proclaim liberty to the captives,
And the opening of the prison to those who are bound;
To proclaim the acceptable year of the LORD,
And the day of vengeance of our God;
To comfort all who mourn,
To console those who mourn in Zion,
To give them beauty for ashes,
The oil of joy for mourning,
The garment of praise for the spirit of heaviness;
That they may be called trees of righteousness,
The planting of the LORD, that He may be glorified.”
And they shall rebuild the old ruins,
They shall raise up the former desolations,
And they shall repair the ruined cities,
The desolations of many generations.

I always think of the part about where Jesus has come to proclaim "the acceptable year of the Lord" at the start of a new year. The acceptable year of the Lord was the jubilee year, a time of celebration and freedom. Jesus came so that every year is the "acceptable year of the Lord". Isn't that good news? Happy New Year!