How do you survive your day knowing that at any given second something could go wrong and that child could pass?
Let me tell you. It’s not always easy. It is definitely very, very hard at times. I’m not going to lie to you and say that everyday is really good and that I’m always so happy. Because let’s be honest… When I’m sitting at home alone with my baby girl while daddy is at work/school… Emotions take over.
It is absolutely terrifying looking down at my child and knowing that she could pass at any given moment. I’ve been thinking lately about how this is possible for any given family… Even without the child having any conditions. There’s SIDS or car accidents or sickness or whatever. But when you are TOLD that your child will pass… that there is NO way that they could make it for however many years… it’s a different kind of terrifying. Normally, you feel like you can protect your child (to some degree) from death… But when your child is diagnosed with a life threatening disorder… There is NOTHING you can do to feel like you are preventing God from taking them home. You just have to “live life normally” until the day God takes them. How do you even do that?
Believe me. We want to give Annalise the most normal life possible. We are trying so hard. But then I realize that sometimes… We aren’t. We have never left her side since she was born. One of us is always there with her. It’s not that we don’t trust people or don’t want a date night/time alone…. It’s because I have this internal fear that when I’m gone, that “any given second” thing is going to happen. And I know I would absolutely regret not being there with her when she passes. We also haven’t felt comfortable enough with traveling to see family because I’m so worried that something would happen and we would be hours away from all of her doctors.
It’s things like that, that explain the different kind of terrifying I’m talking about. I would love to be able to just pack some bags and go on our first family vacation. Take her to places she might not get to see later in life. But because there is always that frightening thought in the back of my head, it’s not allowing me to feel comfortable enough to do that.
Therein lies my dilemma- She has been doing so well so far, so who is to say that all of a sudden something is going to change just by leaving her with someone for a couple hours or going out of town? Why can I not just cast those fears onto the Lord and let Him be in control?
It’s hard (at times) walking by faith and putting all your fears and worries on Him… but through this journey, I have learned that doing just that, could have some amazing outcomes. I mean… Look how far we have already come since we put our faith in Him since the very beginning. So why can I not just let this one fear go?
I’ll be honest… I’m still working on letting this fear go. Simply because I don’t want the situation to turn into a painful event. But now that I’m really thinking about it…. I remember that if it were to turn into a painful event… that painful events are not just about pain. They are about gain as well…. the gain of more joy in God. When we know our fears and burdens have been lifted from us and we are at peace, we can see and feel the worth of God. We know that all future pain will bring us even more of God. When we cast our fears and worries onto Him and believe in His promises… I know everything will be worth it and okay.
So here I am… Admitting to you all that this fear has taken me longer than most to place in His hands. But as of right now, I’m letting it go. And I’m excited to see where it takes us.
Like always, now is the time to update you on the main reason you are reading this 😉 Little Miss Celebrity!
As of May 17th, Annalise is now 3 months old! She has made it 1/4 of a year!!! And she has hit the double digits in weight finally! Yesterday (May 19th), she hit the 10 pound mark for the first time! We are so excited that she’s finally growing like she should be!
Because she has been doing so well, we are finally at the point where her at home nurse only needs to visit once a week!!! We finally got started with working with a therapist as well! She will visit about once a month (with a few extra in between) for the next 6 months. By then we hope that Annalise will be able to lift her own head and gain those neck muscles to where she can be in a regular car seat! Right now during tummy time, she gets so mad because she can’t lift it by herself (she tries soooo hard and just can’t since it’s still too big compared to her body). So lately we have been lifting it for her. And when we do that… It’s pretty comical. She throws her head from side to side trying to get our hands off her head but we know that if we would let go, she would just face plant. So clearly we don’t do that 😉 She is definitely a wiggle worm- always moving her arms and legs. We have been working with her on grabbing onto toys and what not as well.
She continues to realize that she can cry louder and longer if she really wants attention… and to us- it’s completely adorable. What parent thinks their screaming/crying child is adorable besides us? Crazy how things like that can be so easily disregarded and taken for granted. ;p
When it comes to doctor visits… We revisit her neurosurgeon next month and see her neurologist in July. She gets to see her pediatrician in a couple weeks for her 4 month checkup/shots. And finally, we will be doing another little eye exam in July as well. That’s on top of her normal visits from her at home nurse and therapist. 🙂
We can’t wait to see how much more she conquers this summer!
Well… I can’t really think of anything else to say right now (mainly because it’s time for our afternoon nap 😉) so I suppose it’s time to catch you up on a week and a half worth of pictures. (If you follow us on her Prayers for the Pragels Facebook page, you will see those same pictures along with others :p sorry!)
We will start way back from Mother’s Day /parent dedication day to today. There is a huge sneak peek of our family photos we had done last week as well! ☺️
And here’s your sneak peek!
I hope y’all have a great rest of your week! Have a fun and safe Memorial weekend as well!
Love you all! Remember to anchor your hope to the one who has already scripted the perfect ending 😉