This one I love more than I could imagine possible. For some reason this week I am super sentinmental about the journey we have been on, Maybe its because in our special needs circle of friends we are watching another marriage deteriate from the pressures of how hard this journey truly is. Sometimes it can feel like nothing can quite destroy or unite a marriage like the destruction of the health of your child, be it mental or physical health. That gleaming moment when you think ” YES we are having a baby” and then the shear terror that fills you as you learn your child will require so much more than you thought. Can your marriage survive all the heartache that is coming.
Then as in my husband and my case, you learn the intial diagnosis of an extra chromosone is NOTHING, in comparison to the litany of medical complications she will have that have ZERO to do with her extra chromosone. I found this picture tonight of when she was 2 and had just finished open heart surgery. I think that is the hardest my husband and I ever cried. It was the first of many times we would hand over our baby girl not knowing if they would hand her back to us. We were novice participants in the world of all things medical at this point. We had no idea how much the future would ask of us with this little soul. I also know that we can never hear ” kick start my heart ” by motely crew without thinking about this day 🙂 We had it on repeat until the surgery was over 🙂 .
I hate that she is so strong and brave now when it comes to doctors and needles. She told her teacher the other day of some upcoming blood work she would have to do. They were going to have to take it from her wrist, and her teacher winced. When our tiny one saw the saddness and conern in her teachers eyes she put her hand on her teachers shoulder , patted it ,and said ” it’s ok don’t worry…i got this..i big i brave i strong. When her teacher told me she and i both had the same heart crushing reaction.
I hate that I can’t make it better for her. I hate that I can only say ” it will just hurt for a second” .
I don’t take it for granted that our marriage has survived 10 years of in and out of hospitals and doctors visit… where it seems each time we go, we add another notch in our belt of ” things we never expected”. We didn’t expect our daughter to have a compromised immune system , we didn’t expect cirroshis, or for her to be checked for cancer every six months, we didn’t expect that her liver wouldn’t be able to process proteins that her lungs need, we didn’t expect her heart would need to be sown up. But we also never expected the immense beauty we would find in each of these setbacks. Like the verse says ” Consider it pure joy, whenever you face trials of many kinds, because you know that the testing of your faith produces perserverance. To quote Lysa Terkeurst, ” I’m glad these verses don’t say “feel the joy” but instead, “consider where some glimpses of joy might be even in the midst of all the hurt”. I can honestly say I have found glimpses of joy even in all this hurt confusion and fear.
There has been beauty from all the ashes. We have known a love like I could have never dreamt of even in my ” fairy tale love stories”. We have become very very comfortable in our own skin and the skin of our daughter. It has developed character in our son that we could have never taught him in a normal life journey. This constant beating down has brought out the fierce protective side of our marraige and our little group of 4 family. We fight daily to secure this love we have been entrusted with. It has been the most glorious jourmey and I marvel that we were gifted with such a blessing. I am so so thankful for this journey, It has reduced us to dust, but as I am reading in the book by Lysa …when something has been reduced to dust it can be remolded into something even more glorious. I am so thankful for every brutal crushing moment because we are being made into something more beautiful for His glory.