Being Raw

photo 1I 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.

20130902-225744.jpgThis “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. 20130902-214526.jpgThe 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.


23 thoughts on “Being Raw

  1. As the mother of a boy with CHD and other issues, reading this made me cry thinking of ur boy and ur family. I wouldn’t wish what ur going thru on my worst enemy and I want u to know that you are not alone. The “what ifs” will be the death of all parents of sick kids and I have found them more debilitating than the actual illnesses to deal with. Having faith and being patient are not my strongest skills but I am a work in progress. That being said, I hope ur little one gets through this hurdle an enjoys some kid time before the next hurdle approaches. I find myself being thankful for him being a horrible teenager because I know that tomorrow isn’t promised and when my son is weak because he was out in the heat or he needs his oxygen or a wheelchair because he just can’t make it to the end of wherever we are going ( and he’s 5’7″ with size 13 feet!) I am again filled with the pain and anxiety remembering that we are fighting terrible cardiac diseases that even 10 years ago our kids just didn’t survive and how tenuous this journey is. Good luck to all of you my luv – take photos and do something fun every day without fail – even if its just an ice cream!! Xx

  2. Keep your head up mama! I have been in your shoes,Owen is strong and will keep fighting with his parents by his side! He needs his family and friends to keep smiling and never lose hope! He knows how much you love him! I believe in miracles. …

  3. I can only imagine what you both are going through. Keep your faith that God does have a plan. The love you have displayed is an inspiration to anyone that reads your blogs. Owen has changed so many lives -forever. We pray for all three of you every single day. His ROAR is heard around the world , and beyond.

  4. Alissa you, your husband and your handsome son are all in our prayers. As blessed as you are to have Owen, he is just as blessed to have you.

  5. It’s difficult to imagine, when one is not walking the same path as another, what a person is REALLY going through and I thank you, from the bottom of my heart, for sharing your hopes, fears, feelings. Know that you are doing the GREATEST work of your life in these days and that our God will sustain you. In deep love, Carol

    This I recall to my mind, therefore I have hope. The Lord’s loving-kindnesses indeed never cease, for His compassions never fail. They are new every morning; great is Thy faithfulness. ‘The Lord is my portion,’ says my soul, ‘therefore I have hope in Him.’ Lamentations 3:21

  6. Don’t despair. I read each and every word you have written, and I have to be totally honest, this is the saddest I’ve been since I started sharing this journey with your family. And the only words I could come up with, was DON’T DESPAIR. I know it’s difficult, and it’s very easy to question the Lord. I know, I was there many years ago. But I learned many lessons along the way, and one of them, was not to lose hope. I thank you from the bottom of my heart for being so very honest with all of us. I wish I would’ve done this, when I was in a situation. My heart and prayers is with you, and your family.

  7. I dont have any answer for you I wish I did .Keep god in your heart he will help you ,all my prays and faith sending to you and your family.

  8. God is taking you through a journey that He knows will help many many people in the future. When Owen survives all this, he will grow up to be a “great man”. You and your family will have a testimony that will touch the lives of many. I just prayed for him again…his smiling face imaged in my mind. I hope you know that all your emails have already been a blessing and a source of strength for me. I’m sure it is for others. I probably met you at your mom’s and Matt’s wedding…but now I know you. God is with you. He circles you, He cares for you, He guards you and He guides you. He is with you now more than ever.

  9. You are in our prayers, my heart goes out to You and Your Family. I have to tell You how much I believe in the power of prayer and I believe in Miracles. Everyday we will continue to pray for baby Owen’s miraculous recovery. I BELIEVE xxx

  10. I love the three of you. I believe that God will intervene on Owen’s behalf. You remind me of a phrase from Philippians 2:15……”in which you shine like stars in the universe”
    That is whom you are to me. You are my role models, and I will pray for a happy and wondrous event until you no longer need my prayers. Owen, you are a my hero.

  11. I don’t know you but I want you to know that I am praying for that sweet baby, and the two of you. Your blog was inspiring and I know God has you in the palm of His hand. I pray that you would feel His presence in a BIG way over the next few days. I pray for clarity as you and your husband discuss the heart wrenching decisions you may be making. Most of all I pray that you will keep the faith and that God would reveal His plan to you and that you will be able to rejoice and be happy again very soon! I’m sorry you are facing this horrendous situation. I will be lifting you all up in prayer! XOXO

  12. Just want you and Jeff to know that you are all in my thoughts and prayers along with my family. Your strength is truly amazing and how you have been able to stay strong, even in a moment of venting, you are still so courageous. Owen has the most beautiful Mom and Dad, that he is truly a blessed little boy. Whatever the outcome, for a child to feel the love YOU have given, is something few children ever feel.
    Much love and many prayers.

  13. I cannot begin to imagine what you are going through…your words tear at my heart! I have been following yours and Owen’s story for a while now ~ prayers are constantly going up ~ Jeremiah 29:11 is my favorite verse ~ I hope that you do not lose hope or faith during this journey that God has put you on…I can tell you that you have touched many people during this time. My prayer has and will be continue to be: May God continue to give you and Jeff strength, peace, and comfort knowing the He is there with you every step of the way. May God continue to guide the doctors into making wise decisions in the care of Owen ~ and may He continue to bless Owen and give him peace and comfort as he goes through all that he has to endure. Not only have you been blessed to be his parents, but he is sooo blessed to have 2 people who love him so much! God Bless!

  14. Thank you for sharing the realness of Owen’s journey. In the midst of so many emotions and after going through all you’ve experienced all I can think of is.. you’re human. It has been a hard road for all of you and it is easy to understand that despite all of the cheerfulness you try to communicate, the time you put into writing this story, taking care of Owen and being there for him, sleeping, thinking, breathing “hospital life” day in and day out has got to wear you down sometimes. And even with God’s help, you know this isn’t an easy task He has given you. So.. what does He expect of you? surely you won’t do this alone, and surely He won’t expect you to stand tall every minute of the journey. It is OK to feel weak if this will make you ask for His help, it is OK to fall if your next move is to gather your strength and rise to fight with more force, and it is OK to ask questions.. God can take it! He will give you answers even if they’re not the ones you’re looking for.. but He will prepare your heart for what’s to come. You are doing an amazing job and Owen is incredibly blessed to have such loving parents. We’ll keep praying for you, you keep being the best parent your baby needs and God will take care of the rest. Big hug.

  15. Wow!! I too am a mother and as I read this I slowly felt my best rate become faster!! As a mother, how could I ever be this strong? Would I totally crumble? Would I panic? How would I ever possibly make the “right”decisions, when I don’t even want to think about those “decisions”? I must say that your sooooooo amazingly strong in thus fight and that even tho God needed this angel, he will always be YOUR ANGEL!!! I admire you sooooooo much and Owen is such an amazingly medium baby!! Prayers from Ms..

  16. Reading this again. Admire your faith so much. I imagine you really could care less that I admire you. I think I get that. I’m so sorry sweet momma. Your boy is perfect now and no longer suffers. I’m sorry that you are suffering. My prayers and heart…

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