Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God. Whoever does not love does not know God, because God is love. This is how God showed his love among us: He sent his one and only Son into the world that we might live through him. This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins. Dear friends, since God so loved us, we also ought to love one another. No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us.
We know that we live in him and he in us, because he has given us of his Spirit. And we have seen and testify that the Father has sent his Son to be the Saviour of the world. If anyone acknowledges that Jesus is the Son of God, God lives in him and he in God. And so we know and rely on the love God has for us. God is love. Whoever lives in love lives in God, and God in him. In this way, love is made complete among us so that we will have confidence on the day of judgement, because in this world we are like him. There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.
We love because he first loved us. If anyone says ‘I love God,’ yet hates his brother, he is a liar. For anyone who does not love his brother, whom he has seen, cannot love God, whom he has not seen. And he has given us this command: Whoever loves God must also love his brother. 1 John 4:7-21
I’ve been struggling to bond with this baby. Compared to how attached I was to A at this gestation, it really scares me in a way just how hard it is to bond. It hasn’t just been since we got our diagnosis at 21 weeks either, it’s been all the way through. Maybe subconsciously I knew something wasn’t right? But I don’t see why that should have made any difference, given I imagined things going wrong all the way through with A as well.
I wonder if not knowing boy/ girl has influenced it somehow. Although I did get a shock when we found out A was a girl (I would have put money on her being a boy, so that was a surprise, as well as knowing that I really couldn’t trust my instincts on baby gender!) I think being able to imagine her with an identity- picking out a name, getting girly things ready and imagining her in her girly room in girly things did help. I originally wanted this baby to be a surprise, so it’s funny that I should be saying this now, especially after spending the first 20 weeks of this pregnancy debating with M whether or not we should find out. After the diagnosis, though, I think we both just wanted to know. Not being able to find out (3 ultrasounds and no one’s been able to tell) has been hard. I feel like I could handle not finding out in any other ‘normal’ healthy pregnancy but this time round I think we both just need to know. As I might have said earlier, I think it would make it a lot easier for M to be able to bond as well.
I don’t think I would feel as guilty about not bonding with this baby if I knew the pregnancy was looking healthy so far and there was no reason they wouldn’t live a good 75 + years this side of heaven. Knowing that his/ her time is very limited makes me guilty that I’m not making the most of this time now by bonding with them and loving them as much as possible. In the book I’m reading (A Gift of Time- highly recommended so far) people are taking their babies to the zoo, reading to them, going on holiday with them, doing everything they might not be able to do later. All very well if it’s your first baby I say. I honestly don’t have time to read books especially to baby, given that I probably read 20 a day to Miss A I’m just going to have to say that I’m reading to both of them at the same time. (Hope baby doesn’t mind skipped pages and half finished books- such is the attention span of a 2 year old).
Thanks to the resources I’ve found, I’ve been beginning to…sort of…think about what we could do for/ with baby at the end, if their time isn’t going to be very long. It’s hard because we just don’t KNOW. Are they going to be stable, and will a good outcome look likely enough that we’re going to say that dialysis/ NICU are worthwhile? Or not? Or if not how long will they hold on? I know I should get going and get some little outfits, maybe a little blanket or something. I’m really struggling, as I don’t know what to buy. When do I expect them to come? Given my history I could probably go 41-42 weeks, but is it likely in this case? And what size do I buy? A was in 0000’s at birth and they were pretty big on her, but if they’re going to have a distended abdomen due to the large kidneys, am I even going to be able to get 0000’s to do up around the waist? And I don’t even know what gender to buy. I’ve seen some cute unisex stuff in the past, but nothing recently. And then I don’t want to put a girl in it, if baby is a girl. And I don’t want to buy heaps of stuff, or heaps of sizes, as I don’t want to have heaps of stuff at home if I don’t have a baby to take home. Do I take the car seat in to hospital? I bought one early, early on but it’s sitting in the garage collecting dust. I don’t want an empty car seat in the car on the way home, but at the same time on the slim chance we do get a take home baby it sounds dumb to spend $150+ on a new seat just because we left ours at home. What about nappies? I don’t want to buy a whole box of newborn ones. I’d be happier with just a handful. I don’t think Huggies will like me only wanting to buy 1/10 of a box though. Maybe I can give the rest away or something before baby is born so I only have what I need and don’t have to come home to it. I know this sounds like small stuff that I shouldn’t be making such a big deal about, but it’s bringing me to tears just thinking about it. I’ve been thinking about it once every few days recently but I only ever get this far before it gets put in the ‘too hard’ basket and left for a few more days.
I’m looking for scripture that I can read to baby though. Things to read to let them know that they are loved and what heaven will be like, how much God cares for them. I came across this passage from 1 John this morning and decided I had to make a note of it to read to baby. Most of it anyway. From verse 18 onwards it speaks mainly to me.
Verse 18 ‘There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.’
Am I afraid? Yes, hugely. I’m scared of the unknown. I’m scared because it seems no one can tell me exactly what’s going on. I’m scared of going down for my next appointment tomorrow- it’ll take some supernatural strength for me not to ring and cancel it again. I’m scared of baby lingering on and on, in some slow death. I’m scared of not knowing when to expect to deliver. I’m scared of the effect it might have on A, growing up maybe never knowing her younger sibling.
Perfect love is something I don’t have. Obviously! ‘The one who fears is not made perfect in love.’ It’s something only God can do. I have to trust that He loves this baby, perfectly, and that there were no mistakes, none at all, in this entire thing.
‘..because fear has to do with punishment.’ It’s so easy for the lies of the devil to come into this. Time and time again I have to tell myself NO, this is not happening because of anything you did. Those little lies just keep sneaking in again and again though.
‘…remember early on in this pregnancy you were wondering how in the world you were going to handle two kids, when you struggle to handle one half the time? Well you don’t have to worry about that anymore…’
Lies, lies, lies. This is probably one of the hardest things for me to get my head around, that I’m not being punished for anything. That if we’d conceived the month before or started trying a month earlier or left it a while we might now have a healthy baby on the way. That it was due to something I took or didn’t take. Should’ve taken more multivitamins, eaten less salt. NO! It’s not due to any of that. I can’t explain why. We live in a fallen world. Sickness and death is a result of the Fall. Not that that is very comforting to me right now.
I do…and this I really do believe, I don’t doubt this at all, although I am still struggling to see the exact logistics…that God will touch more people with this baby’s medical conditions and shortened life than he would if I was having a normal healthy pregnancy and having a baby with a normal life expectancy. I don’t know how he will, who he will touch, etc. I don’t know any more than that. But that I really do believe.
You’d think that would be enough for me, just knowing that. Because I am such a broken person, though, it’s not. Too many other things make this one thing I do know and believe, that should be giving me perfect peace in this situation, hard to see a lot of the time. All the fears, lies, emotional turmoil is taking its toll and really messing me up. I have to be really conscious to take time for myself to really stay connected to God to get me through this. And every day’s still a struggle. Every hour sometimes.