If the blessing of SMA is “Living for Today”, the curse (one of many) may be the “Reluctance to Dream.”
When SMA accosted our lives over 3 years ago we knew we could never return to the world of “It won’t happen to us”. As we wait patiently for the arrival of our daughter we know it is only by the grace of God that we stand here today. It is through God’s grace that we are having another child and His grace is allowing Jadon to meet his sister. This is something we do not take for granted. In fact, I made this shirt two years ago in case we were ever blessed with another child and Jadon wasn’t here to place his hands on momma’s belly.
Jadon is not only here but he is thriving and he is very excited to meet his little sister. Kristin has been recording BGB’s (that’s Baby Girl Burks) heartbeat at her weekly doctor visits. Jadon is simply mesmerized when she plays the recording for him. We play it at least 5 times or he gets very grumpy.
We have already had testing done and BGB is SMA free.
But like I said, we were evicted from that blissful world of “It won’t happen to us.” She doesn’t have SMA but there are a thousand and seventeen other things that could be wrong with her. How do you define “wrong?” By definition there is a lot “wrong” with Jadon but he is perfect to us. He is exactly who he was meant to be. He is our son.
We really aren’t in a state of “worry”, just simply that crazy “Reluctance to Dream.” We want to dream of her future and we want to plan all the great things she will do. Those things would be OUR dreams and OUR plans, not hers and likely not God’s.
So we will try and finish her room before she arrives and we will pray for her every night. We pray with Jadon that she will be healthy, happy, smart, beautiful, and funny. She better be funny, healthy first, but then funny.
We will welcome her into our lives in less than 7 days (WOW!!) and she will be loved unconditionally. She will have the best big brother to learn from and two parents who fully understand what a blessing she is.
Beautifully put! I know exactly the “Reluctance to Dream” feeling. I never put a word to it, but you described it beautifully, thank you!
Beautifully said. I remember thinking with Henry’s pregnancy “will I have another child with Autism?”. It didn’t matter we love the boys so much. Henry is fine and so is Cameron, Autism and all! Good luck and blessings.
I am so happy for you guys! What a great Christmas gift for all of you! My prayers are with your family as you embark in this new and exciting family adventure.
We are so excited to meet Miss Ladybug. I agree Jadon will be the best big brother!! You and Kristin are the best parents a child could have. God bless you all!
Know what you mean…we were evicted from the “it won’t happen to me” world when we lost Jaime. But God is still in charge. Every day is a gift from Him…every moment. I don’t take any of them for granted. You guys are doing the same with Jadon and you will with his sister! Jadon is about to get so much more love (and no one knew that was possible)! His sister will cherish him…and he will cherish her.
Always so blessed to hear the next part of His story for the Burks family. Thank you for continuing to live out His love and share your lives with all of us. We learn and we understand. We rejoice with you now in this time of expectation knowing He has another special gift for Tony and Kristin – a little girl as “perfect” in His eyes and is your little boy. Much love to this family, each and every one of you!
The boys and I just read through this. The Jason’s hope shirt is priceless. The boys think you were smart to plan ahead, but are so glad he is able to enjoy the heartbeat and to meet BGB. We are blessed to have your family in our lives as we have learned so much. As we pray each night hearing the boys say, “and please watch over Baby Jadon” regardless of other folks we mention, Baby Jadon is never off the list…
Of course the boys and I were thrilled to “assist” with some stellar photos. We hope to have our video and photo ready for the entry deadline.
I just came across your blog, and this post so beautifully captures thoughts I couldn’t put into words. We lost our first to SMA in January and are expecting a baby girl in October. No testing yet, but I am confident she is exactly what the Lord has planned for our family – SMA or not. Thank you for your words – this was exactly what I needed to read today.
Thank you for your comment on our blog post. I am sorry to hear of your loss. It is encouraging to see that you are trusting fully in God’s plan. Jadon has been the biggest blessing in our lives and has forever changed us for the better. We will pray for the good health of your baby and your family.