I used to think of God as this person who sat up in the clouds and with a point of a finger he could zap anyone he pleases with the trial of his choice. The entire time I was pregnant with Em I never really thought "why me?, or why us?", I just figured that this was just some crazy hard trial that God thought that we needed to go through, and that it was going to have a really cruddy ending but we would somehow come out stronger in the end, and that we would somehow manage to cope with losing a child.
But then Em was born. And she was perfectly fine, and still is. And to this day I really can't get over it. Every time people see us they keep reminding us of how much a miracle she is. Don't get me wrong I 100% know that Em's life, and her health are one ginormous miracle. But with that has come a lot of guilt.
I'm a member of a Facebook group called, "Parent's for Hope" which is essentially an online support group for families with children who suffer from any of the four forms of Holoprosencephaly. Almost daily there is someone on there talking about how their child is on feeding tubes, or breathing machines, families whose children have severe cleft pallets, single nostril noses, and sometimes just one eyeball in the middle of their head instead of two. When you have a condition that effects the mid-line of your brain, it basically has a good shot at effecting the symmetry of your entire body and all its organs, and yet Em has escaped unscathed. There are also people who like us, found out prenatally about the diagnosis and now have the rest of their pregnancy to worry about what their lives are going to be like, post birth. And almost weekly there is someone on there who talks about how they've lost their child, or how they're getting close to that point.
I feel guilty that so many people going through this have it so much worse than we do. Through this I think the biggest thing that we've learned is that God truly does hear our prayers, and that he is merciful. As imperfect as Derek and I are, He still heard our prayers, and blessed us with this healthy little girl. We will never stop being grateful for that. We'll probably never fully understand why He chose us to be the ones with the healthy child. Maybe He needed to show not only us, but our family and friends too that He works miracles, and I'm here to say that He does! I hope that we can always live our lives in a way that keeps us worthy of this miracle that we've been given since that's the only way that you can really ever show gratitude to Heavenly Father- by being obedient.
^ Remember when I chopped up Jay's binkies? Nap time was rough that day so I ran to the store and bought a new one before bedtime... Luckily he knows he only gets them in his crib now, so at least we've cut back on the usage (#imawimp)
Things to know about Em at two months:
- Full nights of sleep aren't as consistent as we thought they would be... but we did get 5 nights in a row last week!
- Jay loves playing with her in his crib in the morning and after nap time
- She weighs 10lbs 13oz and is 22 3/4 in
- She doesn't fit in newborn clothes, but we make it work anyways
- She has started laughing, or at least making happy noises
- We can pretty much get her to smile on demand
- Her hair that's growing back is coming in brown- so I think we're only getting one blonde baby
- Her nighttime tantrums are easing up, so we're all super grateful for that
- I officially put both kids to bed last night without help from Derek (#winning)