Sunday, February 24, 2008
Anyway, as we were reviewing all our test results, at one point I glimpsed at Olivia's file and there was the word "Deceased" written on it. That is her status here on earth. For a moment I was deeply grieved, and then I stowed it away to ponder later because I wanted to focus on the conversation. Ironically enough, I had written that word beside Nicholas and Olivia's names on some other paperwork I had filled out that same week, and it didn't bother me at the time. I think it's different if I state it that than if someone else does.
Words are powerful things. They can speak life or death over someone. As I've continued to think about what that word "Deceased" meant to me that day, I'm so grateful that it is a word that is limited to our physical life here on earth. Yes, "Deceased" is Nicholas and Olivia's status in the physical world, but in the Book of Life it is written as "Alive Forever!" Here on earth, I exist as a physical being, but I also have the Spirit of God within me. I long for the physical presence of my children but can also have a deep connection with them where they are. How precious is that?
Wednesday, February 20, 2008
I was at my chiropractor today, and I mention her here because she is a gifted healer. God brought her and her husband (who is also a very good chiropractor) into my family to make Nicholas and Olivia's physical well-being on this earth as good as possible. So Family First Chiropractic has become a place where my children and I seek physical wellness. Anyway, I discovered today that even though I thought I was making marvelous progress, I have been undoing every adjustment she's made as soon as I leave the building. You see, I have developed a bad habit of cracking my neck and back when it feels "out". Apparently, this has been the equivalent to giving myself highly inappropriate chiropractic adjustments.
And can you believe it? The Spirit spoke to me through this example. I need to leave my healing up to the experts and stop trying to fix it when it feels uncomfortable or there's been no progress. In the physical realm, this translates to "Don't be your own chiropractor!" In the Kingdom, this translates to accepting the path that God directs for my emotional healing and not trying to "adjust" it when I think I need it.
Tuesday, February 19, 2008
In my writing and in everyday life, it is my hope and my prayer that you are seeing who I really am. I'm so grateful that I have friends and loved ones who rejoice that I can be OK even while learning how to live with great loss. I'm also grateful that I have friends and loved ones who will give me room to be "not OK". I'm in a place where I feel connected with all my children and have accepted that I need to relate to Nicholas and Olivia in a different way than I do with Sabrina. It's a good place to be.
There are things I miss, though. Soft baby skin. Tiny hands and feet. The scent of the tops of their heads. Cute little outfits for them to wear. Achieving developmental milestones. Being able to hold them close, both at the same time. It's hard to live here in the physical world and only being able to see glimpses into the next world where they have gone on ahead.
Even if you're not in a place where you can accept the concept of a sovereign God, you've got to admit that things happen to people every day that are out of anyone's control. Accepting that your life may not be your own and that it is not under your control can be a scary thing. I know that without the saving grace of Christ I would be asking why right along with you. Now I ask why not? Do we only accept the good things from God and not the bad?
I cannot control what happens to me and those I love, but I can control how I react to it. And I choose to react in a way that brings life.
Monday, February 18, 2008
It was so strange for me to be home after my long vigil at the hospital. I didn't know what to do with myself; my mom, protecting me and allowing me to grieve, took care of the girls while we made arrangements and tried to adjust to this new "normal" of life without Nicholas. Keeping busy taking care of things for his arrangements was how I kept going. That was something I could do for him as his mom. Thanks be to God for surrounding Corrie and I with creative, caring people, because Nicholas' memorial service on December 2 was meaningful and beautiful.
My mom stayed with us for another week to make sure we weren't alone right after the funeral and to help us transition. We doted on the girls, appreciating every moment with them. It all seemed too easy now, with only one baby to take care of. We were so grateful for having Olivia, that "at least we didn't have an empty crib." Mom went home on Sunday, December 9. On Monday I spent the morning getting back into routine with my girls, spending time with them. I saw how much Olivia looked like Sabrina did when she was a baby and I decided to pull out the photo albums to compare. When I looked through the pictures of Sabrina at 2 months, then 4 months, I realized that she was doing things that I had never seen Olivia do, and she was already over 5 months old.
I knew. I knew right then and there that she had it too. Of course, I phoned the pediatrician right away and got an appointment for a few hours later. Then I phoned Corrie and told him I thought Olivia had SMA too and that we were taking her to the doctor that afternoon. His first reaction was anger. I'm not sure what mine was. Anxiety? More grief? I stewed all morning and then I distinctly remember as I was locking the door to leave for the pediatrician that I consciously made the decision to let it go. I said, "Okay, God, whatever You want to do, I'll go along with You, but You'll have to strengthen me to do it." I had to give it to Him. I had nothing left in me to deal with this.
Olivia's pediatrician took one look at her and immediately made arrangements for her to go over to Children's to be assessed. I think God had already lined up the same great doctors for her as Nicholas had, because they all happened to be on call that day too. She was admitted to the CH5 ward for assessment and diagnosis. Olivia and I stayed overnight, and it wasn't a very good night. She happened to pick up a cold and was coughing a lot. Her oxygen levels were really good, though, so once they delivered the diagnosis of SMA Type I for Olivia, we were allowed to go home on Tuesday.
We were angry, devastated, exhausted. We absolutely did not want to go through all this again. Anger was the first reaction of anyone we told the news to. Our friends and family cried out at the injustice of it.
Wednesday, February 13, 2008
We were supposed to be facing the challenges of chasing a couple of crawling children, introducing solid foods, and trying to find babysitters that will take on twin babies and a big sister. Instead, we have mysteriously returned to a place of quiet evenings, free time, and the ability to come and go without major complication. What a terrible freedom.
However, the price paid for our freedom was great, and in honor of that we have determined that we will not waste it. We will enjoy what has been given us. We will treasure the time we have together as a family. We will experience all that God wants to offer us. Nicholas and Olivia were beautiful children that loved to be in the middle of family fun. I can't imagine that they would want the world to stop because they weren't here in body to experience it with us.
Saturday, February 9, 2008
Sabrina grieves for Nicholas and Olivia. Oh, she loved those babies! They were her babies, you could hardly keep her from them. We always had to tell her to back up, or she would have smothered them with her love. Sabrina had always wanted a brother and a sister. We would ask her when she was smaller if she wanted a brother or a sister, and she always answered that she wanted a brother and a sister.
Thank God for the short attention span of a 5 year old. When she wants to talk about Nicholas and Olivia, we do, and we cry sometimes. But it doesn't last long, and she's moved on to having adventures and tearing up the living room. We've always been honest with her about what happened. She knows more about death than a 5 year old child should. But she also knows about Heaven too.
The three of us are very close now. Even closer than we were. Now that things are settling down into the routine of our new "normal", we have been seeing our little Sabrina again instead of the angry whirlwind of emotion and defiance that had been what we were living with while our gentle babies were dying. I thank God for Sabrina. What a beautiful, little bright spot of joy she is!
The next day he seemed better, and I was encouraged. He had overcome a cold on his own not long after he was diagnosed, and I hoped he could do it again. But Thursday night was an ordeal. He could not get comfortable and by 3:00am I didn't think he could cope on his own anymore. I seriously considered calling 911 because I didn't know if he would die in his car seat on the way to the hospital, but I didn't want to wake up the neighborhood and scare Sabrina. So I drove and I prayed all the way there.
I've never been to an emergency room and went right in before. Nicholas was very sick. They put him on oxygen, took blood tests and X-rays, and I was relieved he was surrounded by people who could help him. We spent a couple of quiet hours in emergency and then were taken up to the Pediatric Special Care Unit (PSCU). I relaxed in the chair and tried to get some rest. I was woken up at about 8:00am when Nicholas crashed. They started to bag him to keep him breathing, took another chest X-ray, was seen by almost every resident in the hospital, and then he was sent to the Pediatric Intensive Care Unit (PICU) with suspected pneumonia. That was to be the first time of many I would see my son on the brink of death. I think it takes a piece of you every time.
They managed to stabilize him in PICU with positive pressure breathing support. During this time, Corrie and I were pulled into a meeting room with a team of doctors to discuss his "advance care directive'. That means a DNR (Do Not Resuscitate) for those who watch hospital shows on TV. I think that was the first time we were faced with the reality of the disease Nicholas had. How do you answer questions about how far they should go to keep your child alive? We cried out to God for wisdom, because He should be making these decisions, not us. We knew that invasive techniques were not the right thing for our family, agreed that no heroic measures should be taken, and went back to the bedside of our son. He was stable long enough for me to go home for a rest. However, we got a call early Saturday morning and I went back to the hospital. His right lung had collapsed completely and they had to increase his breathing support.
After that he remained stable long enough for more aggressive measures on Monday. They increased his chest physiotherapy, added a cough assist machine and frequent suctioning to his care plan, and put him on very sensitive BiPAP positive pressure breathing support. By Thursday, the doctors determined that his lung had been reinflated. We defined our new goals to be to wean him off of supplemental oxygen (getting him to "room air") and to wean him off of high-pressure continual support. By the next Tuesday, after 12 days in PICU, he was determined stable enough to be under the care of the PSCU. That was November 13. Our days in PSCU were good. Nicholas was loved and he and our whole family were really cared for by the staff there. We were making steady progress and talking about preparing for "when Nicholas goes home". I was confident enough in his care to go home at night to see the girls and sleep in my own bed.
Either Nicholas caught a cold, or he was at the end of his strength, but on November 25 he started to quickly decline. I remember the date well, because Corrie & I were at the Cargill Festive Party and I got a phone call there that Nicholas had shown some problems, but was stable. When we got home, I called again and he was sleeping OK. Why do kids always get sick in the middle of the night? I woke up around 3:00 and felt the need to phone again, and the nurse told me she was just about to call. Nicholas needed me, he wasn't doing well.
I drove to the hospital for what seemed like the millionth time, cranking up the music really loud and shrieking at God that this was not fair and I didn't want to do this anymore. However, by the time I got there, I was focused on Nicholas again and ready to submit to what God wanted for him. I faced a long night of walking with Nick through the valley of the shadow of death. He was so fragile - if they took the BiPAP mask off he would immediately decline and they would have to bag him and give him oxygen. Somehow he stabilized again the next day, and I spent Sunday night by his side. I was so grateful that Corrie could be with Sabrina during this time. We worked together as a team for our children.
Monday morning Corrie and I found ourselves once again in a meeting room with a team of medical professionals. They told us that there was nothing more they could do for Nicholas, and asked us what we wanted to do. Asked us!!! What did we know? We all decided on giving him another 24 hours and see how he did, because we just couldn't make a decision at that point. Monday night I called Corrie to the hospital because we had a long episode of trying to keep Nicholas going and of course we wanted to make sure Cor was there if Nick died. Again, he stabilized, and we faced another meeting Tuesday morning. We decided that Nicholas had fought long and hard and he was just too tired to keep on going. We decided to remove all life support. How does a parent make that decision? When we went back to his room, he was so pale, so still, and looked exhausted. We knew we had to let him go.
The medical team removed all the machines in the afternoon and gave him some medications so he would feel comfortable and not anxious. It was so wonderful to see his face without that hateful mask on it. With the amount of dramatic declines he had experienced over the last couple of days we expected Nicholas to pass away quickly, but his little heart was strong. We had three beautiful hours with him, holding him, talking to him, rocking him, singing to him. He grew paler and paler until he opened his eyes and smiled. He breathed his last breath in my arms at 5:00 in the afternoon of November 27, 2007.
Friday, February 8, 2008
The Spirit reminded me that God values weakness, and that physical strength is something that is valued by the world. My children were not disadvantaged because they lacked physical strength.
One thing I was able to observe in Olivia is that as the disease progressed, she became more peaceful and content. She was at the developmental age where her natural desires were to explore her world and to resist being held back for any reason. However, I would walk into her hospital room and on many occasions she would be quietly laying there, watching TV or observing what was going on around her. She was tranquil and looked deep in thought. I hoped that at those times God was ministering to her heart and telling her things that I will only know on the other side. Olivia had always been a fighter with an incredibly strong will, and I saw how her acceptance of what was happening to her body had transformed her. What a beautiful and powerful lesson.
Thursday, February 7, 2008
How can I possibly be doing OK? Grace. I'm being carried by God's grace. I'm firmly in the hand of God's grace. What does that mean? To me, it means that as long as I continue to bring everything that has happened to His throne and tell Him how I'm feeling, and leave it there for Him to take care of, He gives me what I need each day. That's the grace of God.
Don't get me wrong - I'm doing my grief work. I visit with Nicholas and Olivia. I look at their pictures, the little movies I made. I know they have died and that they are never coming back. I cry, I wail, I carry sorrow. But I'm OK. What an amazing gift.
So as long as you anticipated Olivia's needs and took care of her first, Nicholas was OK with waiting for his turn (what a gentleman). Only when they both wanted to eat at the same time would they cry together. What people don't realize about twins is that it's not crying at the same time that is the hard part, but that they cry one after another. Taking turns until you realize you will never have a moment to yourself again.
But we settled into what was our new "normal" and accepted that this was going to be our life for a little while. Our mantra was "this won't last forever" or "it's getting better every day". And it did. I got to the point where I could feed and care for the babies at the same time (in short bursts). Some of our fondest memories are of me feeding both babies at the same time on this giant twin nursing pillow we had. We were doing it! We were parents of twins!
I always had questions about Nicholas - is he too sleepy? should he be this quiet? is he normal? And for a while I was reassured that he was our dream baby to offset his spitfire sister. Corrie always had questions about Olivia - does she cry too much? does she have colic? is she normal? And I reassured him that some babies do cry a lot and they grow out of it. My deepest concerns about Nicholas were confronted the day our midwife came for the 6 week follow-up visit and told us that he needed to see a pediatrician right away. He had no muscle tone, couldn't hold up his head, and was very floppy. We had also had a harder and harder time feeding him as he seemed to have trouble coordinating his swallowing in certain positions.
We saw our pediatrician the next day and he agreed with the midwife and made arrangements to admit Nicholas to Childrens' Hospital for neurological and metabolic testing. Looking back now, I know that anyone who examined him knew right away he had SMA. However, as parents we of course were ever hopeful. Maybe they were wrong - maybe it was just a vitamin deficiency or something.
What is it like to be told your child has a fatal illness? It's like exploding internally. Your brain blows up and you can hardly understand what is being said. Your heart shatters and you're not sure if will keep on beating. Your lungs need to be told to keep breathing. I was by myself when the neurologist came to deliver Nicholas' diagnosis. I couldn't understand what she meant - was he going to die? In weeks or months? She replied, "...not weeks..." What did that mean?
After Corrie and I talked later, he went home and looked up everything about spinal muscular atrophy on the Internet. I didn't want to know what he had learned, I only wanted to believe that they were wrong. We held on to hope fiercely - maybe God will heal Nicholas and this will be just a bad memory. I remember coming home from spending 4 quiet days in the hospital with Nicholas, and it was like coming out of a cocoon. I was exhausted, emotionally wrecked, Olivia was crying nonstop, Sabrina was acting out, and my little boy was going to die. For the first time in a long time, I went to bed and didn't want to ever get out.
God met me that night because I found I had the strength to get up the next day. There were children to care for. I thought I had entered into a new level of relationship with God back when I was really anxious about how I was going to care for twins, but I continued to discover that the levels of relationship with Him are as infinite as He is. He met me in a real way when I cried out to Him. I had within me the knowledge that God is good, that he loves us passionately, and that those things do not change with our circumstances. Our circumstances don't define the Truth, but the Truth can carry us through our circumstances if we will yield to it. Every day I told Him how I felt about things and He gave me what I needed to get through another day.
The time with our babies was so rich. They were wonderfully cute, and once we got past the newborn stage, much easier to care for. We had a daily routine and we all had each other. As a twin mom who had carried both babies inside her for 39 weeks, I craved being with them together. I treasured the quiet times we spent as the three of us. Usually we had arranged it that two adults were always around to each care for a baby, but in the middle of the night I got up and cared for them on my own. We would all sit together in the dark while they had their night feed and I snuggled them both. When they were both done and sleeping again, I tucked them both into their crib and went back to bed for a while. It's amazing how during those times all you can think about is getting your sleep, but when you look back you can see how precious those quiet times were.
Olivia had bright blue eyes like a little bird. Her hair was like soft little feathers. Once she found her voice could be used for talking instead of crying, she made sounds and noises nonstop. She was always discovering how she could make a new sound. Even her favorite toy was noisy. Nicholas had big deep blue eyes like pools of water. He had a wide smile that lit up his whole face, and liked to observe what was going on around him. We used to joke that he liked the Showcase Showdown of the Price is Right, because he would either wake up just in time, or fall asleep in the swing to the sounds of beeping on the TV. He also used to like to sit in his bouncy chair and watch me in the kitchen. When he talked, it was precious, because it takes a lot of air to talk and it was probably hard work for him.
They shared a crib; Olivia's side was the left side and Nicholas was on the right. I think they liked having a cribmate, because once they were asleep, they stayed asleep until it was time for them to eat again. They were such good babies. Bathing them was easier when there was one adult for each of them, but when it was just me, I would first bath Nicholas while Olivia watched from her bouncy chair. He would be ready for a nap while I then bathed Olivia. Looking back, I can't believe I was able to care for two babies at the same time! I would triage situations - if they were both crying, then I usually soothed Nicholas first because he usually just wanted a little snuggle before going to sleep. Then I could take longer with Olivia, because she needed more help than he did to fall asleep. She was just too busy to settle down on her own.
Getting out of the house was a challenge, but could be done. Again, I would get Nicholas ready first because he was content to wait, and get Olivia ready at the last minute. Sabrina was often a big help and got ready on her own or kept the babies occupied. Nevertheless, we didn't go out all together very often, because it was so much work. I do remember Corrie, Sabrina, the twins, and I all going grocery shopping at Superstore once. We used two carts, each with an infant seat, and actually made it through the store and bought groceries! What a triumph!
Wednesday, February 6, 2008
The hard part about living a life where your loved ones are in Heaven is trying to keep them alive here on earth as well. I like using the word testimony when referring to Nicholas and Olivia because I want to authenticate them. They did exist here on earth for a time. I also want to acknowledge that they are a part of our family even if we cannot perceive them with our senses. This is their story from their mother's point of view. Hopefully, one day their story from their father's point of view will be told too, because they have a great dad.
Corrie and I had gone back and forth for the four years since we had Sabrina on whether or not we would have more children. We had never felt strongly enough either way to make a final decision. The way I had remembered it, I loved being pregnant and really wanted to have the experience at least once more. However, both Corrie and I were apprehensive about going through again the intense self-sacrifice that a baby requires. After all, Sabrina was old enough to be fairly self-sufficient and we had a lot of freedom as a family. Around Sabrina's 4th birthday, Corrie and I finally decided that it would be good for her to have a sibling.
It must have lined up with God's plans, because we got pregnant right away. I was amazed at how quickly I grew, because I was in maternity clothes only two months into the pregnancy. We all joked about me having twins, because I was so big so fast, but our midwife reassured us that second pregnancies often showed a lot quicker.
In February 2007 Corrie and I went for my 18 week ultrasound. I had to go in by myself for the measurement part of the ultrasound, and not long after the technician started, she said, "Hm. Let's stop for a minute. What do you see here?" It had been 5 years since I had seen an ultrasound, and then only once, so I thought I was seeing a head and a little body. She replied, "There are two heads there." I was alarmed and asked, "On one body??" She reassured me quickly that there were two babies, two whole babies.
I started to cry. I was completely shocked and overwhelmed. We called Corrie in, and as soon as I saw him, I started to cry again and said to the technician, "You tell him..." Of course, Corrie looked like he had braced himself for bad news. The technician told him we were having twins. He was so excited! I felt so much relief that he was happy for us. He had to phone everyone with the good news right away.
Talk about changing all your plans! Changing your life, your dreams, your expectations! We immediately realized that everything had to change to prepare for the arrival of these two little ones. We sold our beloved VW Jetta and bought a minivan. We sold our little camper that went across Canada with us because it only slept 4. We sold the boat that only sat 4. Corrie sold his quad that he never had the chance to ride. We sold our tiny little house in Elmwood and bought a lovely house in North Kildonan. All in four months!
Being pregnant with twins was an amazing experience that I never thought I would consider doing again, but would do again in a heartbeat. I loved telling people I was having twins. I loved how big I was. I loved the abundance of carrying and sustaining two lives within me. It wasn't without its challenges, of course - I had to eat and drink constantly to ensure that I had enough calories for good growth; I had to get lots of rest; and at the end I was so enormous that I couldn't walk far, I couldn't sit at a table, and heartburn was my constant companion. Nicholas was nestled inside me on my left hand side, head down like the good boy he was. Olivia was out front on my right hand side, in a breech position with her head constantly in my ribs. I used to say that she would come out with a dent in her head from my ribcage. In the middle was a wonderful jumble of feet.
Our twins were finally induced at 39 weeks because it seemed like they had no plans of ever coming out. They were born on the morning of Corrie's birthday, July 18, 2007. Nicholas' arrival was fairly uncomplicated, but they had to pull out Olivia by one foot. I of course didn't see it, but Corrie did and he seemed quite traumatized for her. He spent some time with her in the NICU so they could make sure she was OK. She was so tiny - two pounds smaller than her brother! We were all healthy and didn't have to stay long at the hospital. When the time came to take them home, it felt wonderful to be the family with twins. We walked through the hospital with two babies and enjoyed the attention.
Olivia's gift was hope. We had been through the terminal illness and death of a child already and found out that it does not kill you. The hope of good things to come for our family was what sustained us and carries us still. There is comfort in knowing Nicholas and Olivia are together in the arms of Jesus, and we carry in our hearts the hope of being together as a family again in Heaven. The circle is unbroken.
After Nicholas died, we turned our hope toward Olivia. She was our consolation, our saving grace. Once we found out that she was to share the same fate as Nicholas, the Spirit gently reminded me that my hope needed to be in the Lord. My hope is in the Lord and I lean on Him to define it for me.
Can the death of a child bring a gift? My marriage has been strengthened. Our family has been brought closer together. I have a deeper and more intimate relationship with God that I never thought possible. We know how much we are loved. Years and years of prayers have been answered.
Would I trade all that to have my children back? Some days, yes!! Most of the time, I don't know... How could I interfere in a decision Almighty God made for our family in love and infinite wisdom and think even for a minute that I could do it better?