A life of purpose

Yesterday, Hope turned a month old, and I couldn’t help but think and reflect on where we were a month ago. I often think about my “birth story” and feel a mix of emotions. It was a long and drawn out labour. I was admitted to the hospital on Friday, and I didn’t have Hope until Sunday evening. I can relive a mix of emotions from being relieved and excited when we finally met Hope after months of uncertainty, and cringing while remembering the pain – both physical and mental.

I will spare you the nitty gritty details of Hope’s birth, but there is one part of our story that I think about almost every day and have felt the need to share. It was my interaction with one of the many nurses I met over that long weekend. With being in the hospital all weekend, I had met quite a few nurses – some that were wonderful, and some that would talk your ear off while you’re in pain. You know the ones. But there was this one – one that I will never forget. She was the one that came in to tell me it was “time” and she rolled me into the OR to deliver. She was the one that kept telling me to open my eyes when I would push because it would make it easier (HA!), and she was the one that roughly tried to give me an iv after the birth. But those are memories that will eventually fade and probably not really be a thought in my mind in years to come.

This nurse rolled me back into my room and congratulated me on the delivery. At this point, I hadn’t really seen Hope. At the moment I delivered her, the doctors let me see her for a second and then whisked her away to the resuscitation room. They were cleaning her up and said they would bring her into my room before bringing her upstairs to the NICU for the night. As you can imagine, I was exhausted at this point, and feeling extremely sad that I didn’t get to have my baby there with me – that I didn’t get to hold her right away. It was just me, Lawren and the nurse in my room.

After congratulating me, the nurse said something to me that I would never forget. She said to me that Hope was beautiful and was normal looking. I thought it was weird that she said Hope was normal looking, but she mentioned that being a high risk hospital they’ve seen it all. She then said to us… “good for you for carrying her to term. I couldn’t have done it and would have ended the pregnancy.” She proceeded to tell us that she has 4 children, and knowing that she’d have another child that would have special needs would be too much for her family.

I sat there, shocked. I literally gave birth 5 minutes ago, and THAT is what she said to us? I calmly responded and told her that we believe that God is the only one who gives and takes life away – that we have no right to make those decisions. She awkwardly agreed with me, but again told me how hard it would be for her and her family.

And the thing is, even without having 4 children, I could understand. I could understand that it would be hard and most likely “inconvenient” for anyone really. I had those thoughts the second I was told that Hope would face many challenges. I couldn’t believe that I was one of those women who would be asked if she wanted to interrupt her pregnancy – never did I imagine that I’d ever face a pregnancy like I did. I thought over and over again about my midwife asking me at my 12 week appointment if I wanted to do genetic testing, and responding with “no, regardless of what happens we are keeping the baby”. As much as I believed what I said 100%, I underestimated the weight that those words carried. We were all of a sudden faced with a situation that no one would ever want, and all of a sudden I found myself questioning whether it was kind or cruel to bring a child into the world that would face challenges, and in my mind, have to suffer. I surprised myself that those were now thoughts that consumed me.

All this to say, the Lord used this situation to not only renew and refresh in me the value of life, but also to grow in compassion for those who were faced with those same difficult choices. You can believe and know deep down in your core that God is the creator and sustainer of life – that He is the only one to give and take away, but we can never know the depth of someone’s pain unless we’ve been faced with a similar situation – and even still, every situation is different.

All that to say, Lawren and I believe that no matter what Hope is faced with, the Lord created her fearfully and wonderfully, and He has a great purpose for her. He will be the One to have His hand on her, sustaining her day after day. That goes for any child – the moment they are conceived, there is life and there is great purpose. Whether that child comes out healthy with everything working “the way it should” or is faced with disabilities. I believe that He will (and already has!) glorify Himself in Hope’s little life. She’s already impacted so many people and it’s been amazing to be a part of that. Early on when we received the news of her diagnosis and my prayers would be lots of “why is this happening!?” the Lord continually led me to the passage in John about the blind man. In John chapter 9 people are asking Jesus what this man did, or what his parents did in order for him to be born blind.

Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.”- John 9:3

I may never know exactly why God is allowing this in our lives, but what I do know is that He will use whatever means He chooses to show how great and powerful He is – even if that means using a little girl named Hope.

When I remind myself that we are His vessels created to honour and glorify Him, all of a sudden this situation doesn’t sting as bad.

And speaking of celebrating LIFE, here is Hope at 1 month old, simply perfect ❤️ (that first picture 😂)

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The S word

Seizures.

Never have I hated something so much. The thing is, we knew Hope would have them, but nothing could have prepared me. During one of our many Mount Sinai clinic visits (while I was pregnant) the doctors told us that Hope’s brain was wavy around the edges, not smooth like it should be. As a result, she was at a high risk for seizures. Knowing she would have seizures consumed my thoughts more than any of her other “problems” they listed. We prayed and prayed for healing, and if not healing, then the right medication to control them; and we prayed that if she would have them for them to start in the hospital, if anything, so we’d kind of know what to do. They did.

3 days after she was born we arrived in the NICU in the morning to be told that Hope had already had 2 seizures that morning, and my heart sank. We saw her third one, and the rest that she had that day, and honestly, I felt ok. All four of her limbs would shake and her mouth would tighten up, and 30 seconds later it was all done. Lawren was able to record her having a seizure and because of that, the doctors prescribed her on anti – seizure medication fairly quickly, and the seizures stopped.

I thought I took it very well – I felt strong. I knew these seizures would come and I thought I handled things well. Very matter of factly.

Unfortunately I didn’t handle things so well when the seizures started again – but this time I was at home, with no doctors and nurses around, and the seizures looked different. A couple of days ago we noticed that when Hope started to wake up, her face, eye and arm would begin to twitch for a couple of seconds. We didn’t know if it was just normal baby twitchiness but something didn’t sit right. I took a video and sent it to our neurologist at Sick Kids. They called me back rather quickly to schedule an EEG – he didn’t like what he saw – and that pushed me over the edge.

I then lived in a total state of fear. Every time she started to stir because she was waking up, I was sick to my stomach because I knew we’d see one. I cried all day, overcome with the strongest state of anxiety I’ve ever experienced. There’s nothing you can do – I would just have to watch her have one. I felt so helpless.

Today she had her EEG and things went well. We were amazed at how well she did and she lay on a table and the lady glued a bunch of leads to her head. A couple of times she squirmed, but then I would touch her leg and she would stop. I feel like she’s already used to having so many tests that the more she is touched, the more relaxed she actually is! Unfortunately an EEG can only spot a seizure while you’re having one – which of course she did not have during the test. However, they again noticed that her brain waves are abnormal – which we knew, and because of the videos I took, they knew what she was having at home were indeed seizures.

The update: they decided to increase her medication a little bit, and instead of once a day we will administer it twice a day so that it is in her system more evenly. After a couple of days, if she is still having seizures, we will include another medication on top of what she’s taking. Thankfully, that medication doesn’t have any side effects and the doctor hopes that she will eventually be on that one only.

During this whirlwind, at the right time, I was reminded of the verse found in Proverbs 37:5

Commit your way to the Lord, trust in Him, and He will act.

Guys – let me be real with you. Trusting in the Lord is hard, and waiting for Him to act is hard. So hard that I’m not going to pretend I have it altogether. When I think of the mountains and the valleys, I realize that I have been so deep down in that valley it’s only God that will help me out. It’s like I’m trying to climb out of it with everything in me, but nothing I can do will be sufficient to bring me to level ground because I get too tired. Too weary. Too depleted of my own strength. And then He reaches down and rescues me – He really does – it’s like once I’ve hit the point where I can’t do anything anymore, He reaches out His arm for me to grab hold of. He fills me with peace, and it’s this continual act for me to choose to remember how He has been my help before and how He’ll do it again. And that becomes what spurs me on. But oh boy, it is hard some days.

Thank you for continually praying for us. We love seeing the way God has already worked in her life, and are trying not to get worked up over things that come/may come. Please continue to pray that the medication she is on would help to control her seizures, and there wouldn’t be any side effects as a result.

And now, because she is too cute, here are some pictures to brighten your day…

Xox