I would like to wish everyone a happy Labor Day. I hope that you all enjoyed BBQs and pool parties with your loved ones. Today I felt very sad and had a hard time snapping out of it. I was mourning my “old” life and even more saddened that I was unable to make Labor Day memories at home as a family. For those of you that know me, know that I LOVE parties. I love ALL holidays. I don’t even care what the holiday is celebrating, if I can get friends and family together in the same room, I am a happy woman. Even more than parties, I love Evites. I would have Bunco parties, candle parties, and ladies wine nights just so I could send an Evite! I love checking them to see who has posted their RSVP and my excitement grows as the date gets closer and the “Yes” list gets bigger. Labor Day has always been one of my favorite summer parties. It’s the last pool party before the Fall parties can be thrown and the last summer themed Evite. We loved filling our backyard with children’s laughter, great friends, hours of cornhole, and pounds of carne asada. I have been gone the entire summer. I have missed every summer holiday and every opportunity for an evite. I left our home on May 8th and I have yet to go back. I miss my friends and family, I miss my home, I miss my dog, and I miss my parties. I miss a life that I felt so comfortable and happy in all the while falling in love with a new life that I am incredibly uncomfortable in and unsure of in so many ways. I am overwhelmed with joy watching our son grow and experience new things. I am in awe of how much love my husband and I have for our greatest creation. This masterpiece that God entrusted us with takes my breath away everyday.
This “new” life we have been asked to live has become overwhelmingly difficult and as of late has filled us with immense fear. As I mentioned recently, my husband has encouraged me to be raw and honest with all of you and I think this post can not get any more raw. I am feeling broken. I am feeling scared. I am feeling angry. I am looking for someone to blame, begging for someone to fix it, and running to the ends of the earth to find a cure. Most of all I am feeling alone and distant from God. I find myself yelling at him, “Where are you in all of this? Where are you asking us to follow you? What is your plan for our son? What is our story? Can you let me read the last page so I know what to anticipate?” So far he has not answered. Throughout this entire journey I have focused on God’s truth in Jeremiah 29:11, “For I know the plans I have for you says the Lord, Plans to prosper you and not to harm you. Plans to give you Hope and a Future.” I am finding myself struggling with the one verse that I felt safe in. The last few weeks have been the longest most emotional weeks I have ever experienced in my life. The plans for Owen and our lives have been outlined for us and the two directions take us down very different paths. We are being asked to do the near impossible. We are being asked to have faith and walk both paths simultaneously until God shows us the fork in the road and leads us down the path he has planned for us. We have briefly discussed this with you before but I feel the need to be completely transparent and share all of the details. Owen’s TAPVR repair has begin to show signs of repeat pulmonary vein stenosis. He currently has a gradient of 7. Three weeks ago the gradient measured a 2.5. Our surgeon told us prior to the second surgery that should the stenosis return there was nothing that he could do to fix it surgically. While his current stenosis is mild it is still present. We can not ignore the fact that there is stenosis but we can pray with all of our might that it does not get worse. The medical staff has had to prepare us for the plan should it become worse. We have had to have many discussions this week in regards to DNR and pediatric hospice/comfort care. All things any parent should NEVER have to think let alone talk out loud about. We are grateful that these discussions are happening now as we currently have a clear head and would hate to make a split decision in the midst of an emergency. What makes these conversations increasingly difficult is that we aren’t there yet. We are having to have them SHOULD it get to that point and then asked to focus on his current recovery. Daily it becomes more difficult and confusing. Tomorrow we have a follow up echo to check on the gradient. We ask that you pray for the gradient that while we hope it is unchanged or smaller, we pray that God is present in the outcome and his plan for us continues to reveal itself. We pray that Owen is given the chance to be a baby, a giggling and exploring toddler, a curious student and grow up to be an amazing man who will continue to touch lives and make a difference! We ask for prayers for Jeff and I that we can continue to have Faith in God’s plan for us and we can continue to celebrate and enjoy every second with Owen. Thank you for loving our family and fighting this fight with us.