I've been wanting to post now for the past few days and kept thinking of things to write and between the crying, researching, working and chasing after kids I really just avoided it all together.
Finally I have a few minutes and wanted to share with you on the status of Berlyn. Monday was her follow up cardiology appointment since her last hospital visit. I was already having a bad morning and was hoping that this wasn't a sign of things to come. Unfortunately, for us this was a sign of how the rest of the day would go.
I asked my Grandma to go with me to the appointment to be with me and keep an eye on Aven for me. I had this gut feeling it was gonna not be news I wanted to hear alone. It didn't take the doctor long to look at her and let me know that he had a good feeling that within the next year or so Berlyn would most likely have to again have the balloon dilation performed. Hearing those words was like a stab to my chest. I tried to play it cool but was screaming inside. WHY??? WHY AGAIN??? I know what the risks of doing another one is. You risk stretching the valve again and risk causing it to leak. We also discussed the possibility of having to one day repair or replace her valve. I know that everyone says that everything will be ok and just take it one day at a time. It's just not easy to not think about what could be a great possibility down the road. I was fine up until the office door closed behind me. I just stood there and cried. I always read about this stuff that happened to other children. Never in a million years would I have pictured myself going down this road.
It amazes me that in a matter of minutes how your life can be changed forever. On Monday I felt like life as I once knew it came to a halt as the rest of the world carried on around me. It was my Moms birthday and I was having everyone over to celebrate. I didn't want to ruin the day so I tried my best to put a smile on my face and act like I wasn't breaking down inside. Sometimes you never realize things living in your perfect world that there are bigger things out there. Things that can bring you to your knees in an instant. Things that have kept you from seeing the true meaning of life and what it really means to live.
Monday night I kept looking at Berlyn thinking how can this laughing baby possibly have anything wrong with her?
Being told that there is something wrong with your child is probably one of the hardest things to hear as a parent. You start feeling so many emotions all at one time and feel so quickly overwhelmed. You go from being shocked, angry, helpless as you realize there is nothing that you can do to change the situation and have so much fear of not knowing where the next day or months will take you.
It starts to seem like everything around you begins to suffer. I have watched my friendships become closer and even some fade away. I have watched as my marriage takes a hit as we both try and learn to come together and deal with our grief on many different levels. (I tend to be more open with my feelings, I think he thinks he has to be the tough one and not show them.) There are so many hardships that come along with this kind of news that can either break you if you let them. Or can make you stronger and realize the important things that really matter.
It breaks my heart to come to realize I don't have the perfect, healthy child that I always dreamed of having and living the life I thought I would. I have found hope that although this new journey is full of many uncertainties that my faith and ability to trust God fully with this will guide me through this journey. I have found joy in the simple things and have learned to cherish each and every single moment with my family.
I know God performed his first miracle with Berlyn's life when we were able to find out at a unrelated urgent care appointment that she even had anything wrong with her heart. I know for a fact that if we didn't find out that day that she might not be around today.
Berlyn is a precious miracle to us and I thank God for her everyday for her and for the changes I have made in my life because of having her here.
I'm satisfied!...for now.
10 years ago
8 comments:
Brianna,
Reading your words from your heart make me cry, because I know. There is nothing noone can do or say to help make it right. It is a reality that we face every day and we look at our beautiful children and think why or how can this be, they look perfect... I just try to remember that God has a purpose and a plan and he will have Glory and when the rain comes, I keep looking for the rainbow. I am here for you. Hugs ...
Rhonda :)
Hi Brianna, Your words are beautiful and full of faith, and it is so true, about that urgent care trip.....that was God working already, taking care of her, giving that wonderful doctor the knowledge to detect this....God is an awesome God and he will continue to guide you, your family and the doctors in healing Berlyn...we are praying for you!
Brianna, Well, where do I begin? You understand so much of how a mothers heart is towards her children, and how very hard it is to deal with seeing them hurt or having anything wrong with them. It is hard to see my daughter having to deal with this, but I know the Lord has brought you to this place of surrender. He will not leave you alone and He will be faithful to work out His perfect plan for your life and for our sweet little Berlyn. He tells us that He has our life planned before we had ever even lived one day. He knew you and Berlyn and Johnny and Aven before you were ever born and He has each day written in His book. I know He will be there to comfort you in moments of sadness, and bring you His grace and mercy in times of doubt. He has walked the road before us and He knows how we feel. I will be there to hold you or cry on my shoulder whenever you need to, but remember He is always near to the brokenhearted, and He helps those whose spirits are crushed. I am so proud of the woman you have become and the mother He has made you to be. I love you my precious daughter, and my sweet grandaughter Berlyn.
My prayers are with you and your little girl.
My oldest son was 6 months when we were told he would be blind by age 1. Hes 3 years old and doesnt even need glasses. Miracles happen. Im confident good things are in Gods plan for your beautiful baby girl.
Just wanted to let you know that I am thinking about you tonight. I will keep you in my thoughts and prayers. Thank you for sharing your struggle with this.
Brianna, I am so sorry to hear this. I know your heart is breaking and it is only natural, especially as a mother, to worry and think the worst that could happen to our babies. But God says, "Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand." Isaiah 41:10
I might have already shared that scripture with you, but that has definitely become my life verse, especailly through this past year. Believe Him when He says to not fear and that He is going to strengthen you through this trial and carry you through! He is so faithful and He loves you and Berlyn more than anything! I will be praying for you guys! Love ya!
Just know that you are not alone, I could echo all of your feelings! We got close to the same report you did last time and even though we've done this before, it still has the capacity to turn the world upside down! God watches over these special kids!
You were on my heart and in my thoughts today and so I just had to stop and pray for you and for your sweet Brianna-I don't why-but I just felt I should and so I did and I wanted you to know that you were being thought of and prayed for! How are you all and how is your baby girl?
Praying that you are doing well.
Hugs and Blessings-
Jill
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