My One Fear

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 πŸ˜‰ 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 πŸ˜‰ 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. πŸ™‚
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 πŸ˜‰) 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! ☺️
Enjoy!

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 πŸ˜‰

www.gofundme.com/hopeforannalise

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The Day I Wasn’t Expecting

Tomorrow is a very big day. And more than likely, some tears will be shed. Fortunately, they will be happy tears…. For the most part.
It is one of the days that I was not expecting to have this year. I was not expecting to have my first Mother’s Day with a living child. I was not expecting to be able to participate in parent dedication at our church.
When we first found out we were pregnant, we were really excited when the preschool director at our church gave us the envelope of information about parent dedication. We were so excited to be able to dedicate to living our lives in a way to teach our future child about the Lord. Then that day in October came that shattered our hopes and dreams. We put that envelope with information in a place where we wouldn’t be able to see it to remind us that it wouldn’t be happening this time around. We completely took that off of our radar.
It wasn’t until about a month ago or so when they reminded the church about signing up for parent dedication that we realized, “Hey! We can do that!!!” I am so beyond thrilled that we even get the chance to do this. I wish there were words to even explain how joyful and grateful that I am to be able to participate this time around. I am so blessed that God has given us this much time with Annalise to where we are able to do this. “Great is the Lord and most worthy of praise…” (Psalm 145:3)!
Then on top of the amazing experience of being able to participate in parent dedication, it’s Mother’s Day! It’s like a 2-for-1 special for us!
If you would have asked me back in October through mid-February how I was going to handle Mother’s Day without my child here with me, I don’t know how I would have responded. I wasn’t even thinking about that back then because I was just so focused on how to handle the grief and loss that we would have to experience. I didn’t want to think about those types of days when happy things were supposed to be taking place.
So this Mother’s Day- I’m sure I will shed some tears. Mainly because I feel so incredibly blessed and grateful to have Annalise here with me on this day. But also because, even though I have not experienced the pain of losing my child yet, I have gone through the process of thinking I would.
So… my heart goes out to all the women who have lost a child- whether it was early in the pregnancy, later on, or sometime after birth. Those children are not forgotten. You, as a mother, are not forgotten. I so admire these women. I can only hope that when the day comes for me to be apart of this amazing group of women that I can prove that God is faithful through it all… that He is so, so good and that He is worthy to be praised. I pray that He is glorified through everything.
My heart also goes out to the women who don’t have children or who are incapable of having their own. I pray that you find strength through this hard day and remember that you are so loved and so valuable. There is always a place and a future for you. Thank you for being some of the strongest women I know and reminding me that God’s plan for our lives is the best plan and that He is in complete control. There is always hope.
My heart is so happy for the women who do get to experience this day with their children though. You are more blessed than you probably realize. It’s so easy to take things for granted when you are surrounded by the love of your children everyday… but I encourage you to just take the time tomorrow to pray for those people who can’t or won’t be able to spend the day with loved ones. Even for all the people who don’t get to spend Mother’s Day with their own mothers.
Because tomorrow is more focused on parent dedication for us, Kev decided that today was the day we, as a family of 3, would celebrate Mother’s Day. So after taking my “morning nap”, I woke up with this site right next to me:
She even signed the card for me! 😜
Β 
The ring is perfect.
Β Β Β 

Our 3 birthstones, with hers in the middle, will always be a constant reminder that she has brought Kev and I together in a way we never thought would happen. Through our journey with her, we have learned so much about love, joy, peace, faithfulness, hope, perseverance, the sovereignty of God, and so on. We never thought we would be put on a journey like this together but she has made our world a much better place. ☺️ She’s a constant reminder that when we put our hope in the Lord, when we cast our cares on Him… His plan is always perfect and He is always in control.
It’s funny how God works sometimes. For the last several days, I have been singing a song to Annalise that I have not heard since I was a little girl. (I sing to her when she is falling asleep and for some reason, this little tune has been helping calm her down and putting her to sleep faster.)
It goes like this:
“Lord prepare me to be a sanctuary; Pure and holy, tried and true. With thanksgiving, I’ll be a living sanctuary for You.”
What a reminder!!!
Our purpose in life is to live each day giving Him the glory and honor that is due. No matter what may come our way, no matter the circumstance, no matter the trials we face… We should be giving Him the praise and worshipping Him.
We should be saying- “Lord, prepare my life to be a sacred and holy place of worship. Help me to give thanks in all circumstances so that I may bring You glory.”Β 
I pray that everyone reading this has a blessed weekend, whatever your situation may be.
Now that I have made you read the heavy stuff that was laid on my heart first, we can get to the part that everybody loves: πŸ˜‰πŸ˜œ
Updated pictures of our little celebrity. (I can officially call her that now that she has been on the local news! πŸ˜‰)
Anyways… as of May 8th, Annalise now weighs 9lbs 9oz. She is getting even more sassier and even more vocal. (We love it!!!) Like I always say… We are so incredibly blessed.
And now the time is here! Enjoy!
Have a blessed weekend!

—anchoring our hope to the one who has already scripted the perfect ending—