9 Days

Not to be negative but I am really freaking out… Today I had a panic attack. Today I started hyperventilating and couldn’t calm myself down. Today it all became very real.

I was on a walk and decided to call my friend whose son also has Williams Syndrome and just recently had open-heart surgery.   The minute she picked up the phone I felt my throat closing in. I felt like I had a large knot filling up my throat and I couldn’t catch my breath. I realized that next week, next Thursday Parker is having open-heart surgery. This month has gone by so fast. I honestly didn’t realize that it is happening next week until I took a few minutes to myself and went for a walk. I started second guessing our decision. Questioning why are we doing this?   He seems so healthy. He is so happy. What if something happened? I could never forgive myself. I sat down in the middle of the park and cried. This really is the most difficult thing I have ever had to deal with. I called my husband in a complete panic and he helped calm me down.

Luckily I also had an appointment with my therapist. She said that if I am questing why we are doing this then I need to call Parkers Doctor and ask, so I did.   Dr. Badron said she 100% feels like Parker needs the surgery. It’s the perfect time to do it now because he’s healthy. She described it like a plumber coming to your house and telling you that you have a pipe that’s going to explode and flood your whole house if you don’t fix it. Would you wait until the pipe explodes or would you fix it as soon as possible to avoid the flood? That definitely made me feel more confident. But I am still scared as hell. She said Parker would be there for 7-10 days if he has absolutely no complications. So my big dreams of being home by Monday are just big dreams.

I’m not trying to have a pity party but..Why?? Why is this happening to us? Why did my sweet little boy get chosen to have a harder life then all the other kids?   Why have we been chosen to endure such pain? I cant stand when people say that we were chosen because we can handle it because any parent I know would do anything for their babies. Anyone I know would step up in the most challenging times.. Why? Because, you have no choice, we have no choice.

On a very positive note I decided to finally post on Facebook about Parker and his Williams Syndrome. The outpouring of love and support has been AMAZING.   I honestly couldn’t believe how many people reached their hands and hearts out to help us. So many people shared stories of their heart surgeries or their kids surgeries. I had a friend from High School who I haven’t seen in 20 years offer to help with our care at CHLA. Making sure Parker is in the best hands and we are taken care of. I had college friends text and message me in tears offering support and prayers.  I have neighbors offering to set up meals for us.   One of my best friends set up t-shirts for friends and family to buy showing support for our family. My brother in law designed the t-shirts.   I thought about 50 -75 shirts would be bought.. We sold over 140!!  And most importantly my best friend from high school is donating blood for Parker’s blood transfusion!

The love we have received will never be forgotten.  We feel it and we are grateful.

9 days from today… I’m really not sure how I’m going to make it.

 

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Little guy has no idea. ;-(

12 Comments

  1. Oh babe. I love you. I feel everything that you are saying and I know that is exactly how I would feel, too. I don’t know why God chose this path for your beautiful family. I really don’t. But I do know that you are doing all the right things. Take confidence in the amazing team of doctors that you have chosen. They are going to take excellent care of Parker. Parker will not remember this. He will only remember the love that you, Tucker and Preston show him everyday. He will get through this and so will you guys. I know these next 9 days are going to be the hardest of your life – there is no getting around that. But, in 10 days Parker will be recovering and this will all be behind you. Stay Strong! We all love you guys so much.

  2. We are so sorry that Parker and your whole family have to go through this. There are so many people who care about you and are worrying with you. You have picked the best doctors and have done everything right. Thanks for sharing your blog with us. We love you guys!

  3. I’m sorry! I feel your pain, it will soon be over and you will get to enjoy your strong little boy again. You are so blessed to have the support you have & the overwhelming love from everyone I talk to. When ever I talk to anyone they ask how they can help your family. Any mother that I’ve spoken to gets chills just talking about it.
    Sarah, Tucker, Preston & Parker we love your family, it will soon be over.

  4. My heart breaks for you reading this. I wish I knew why Parker and your family were given this obstacle. But I know this is an obstacle that your strong little boy and your strong family will leap over. Parker will conquer this surgery and be an even stronger superhero. You have made the best choice possible for his care and you should go into this with confidence because you are a great mom who has done everything you possibly could to ensure success. Thank you for writing this blog and including us on your journey. We love you guys and will support in any way we can.

  5. Sarah, I don’t even know what to say! I wake up every morning and pray for Parker! I know you must feel so helpless and out of control, it breaks my heart!

    When my daughter’s dad passed away, watching them deal with the pain and their hurt and confusion, was too much to bare, and it still is! They were just too young to lose their dad! I don’t understand why we have to watch our kids suffer so much in life sometimes! As parents we want to protect them from all pain and hurts!

    I just pray that God puts His healing hands on Parker’s heart and that He puts his arms around you and Tucker to give you strength through this very scary and unsure time!

    Love you all!

  6. Sarah, one thing I noticed from this post that you wrote is it sounds like you have chosen the BEST doctor out there. It sounds like Dr. Badron is being extremely honest and sincere with you and is very good at communicating with you. I think it’s so great she took the time to speak with you on the phone and settle some of your fears. I really believe you and Tucker have made the best decision for your baby’s future and have him in the hands of someone who really cares about your family. Parker is such a strong boy, he is going to pull through and we are all here with positive thoughts for you!

  7. Sarah and Tucker…..you will never know why this is happening to Parker and your family. And I’m certain that this is the most difficult thing to ever happen to either of you.
    I am happy, however, that you have an excellent doctor in Dr. Badron that she was willing to take time from her day to speak with you and try to allay your fears. You obviously have chosen the surgeon and hospital wisely…you put a lot of thought into this decision. They have an excellent reputation and everyone there, doctors, nurses, technicians, will take excellent care of Parker.
    The days may seem to have gone by quickly waiting for this surgery to happen. Keep in mind that next Friday will be one day post surgery, Saturday will be two days post surgery, Sunday will be three days post surgery. Before you know it, all three of you will be home and Parker will be well on the road to recovery. Above all else, stay positive, look to each other for strength and pray for Parker’s full recovery. God is great, God is good and God will watch over all of you. We send our love and prayers.

  8. Sarah…

    Anything you say and feel is ok…Its all normal and completely understandable. You are right, you are stepping up to the plate because that is just what you do. You don’t have a choice. And yet you have done it with such grace, character, determination, perseverance, and love. All the things that are quite admirable. Not the position you would have chosen, but for some reason it chose you and your family. Sometimes, its not always clear why…and maybe it will never be clear. But, it certainly is a test of faith. Faith that you and your family will get through this and make it something good and helpful to other moms/families hearing the same diagnosis you did that day. Faith that you have done everything and will continue to do everything in your guys’ power for your family. Faith that you have the best team of doctors surrounding your family. Faith that one day soon life will get back to some sense of normal. Faith that there is a power higher than us looking over you guys. You have so much love and support, and prayers surrounding you guys. Without even knowing it you have made a difference already in other people’s lives just watching how you all have handled this and chose to make it something that has brought your family closer.
    Love you guys!

  9. Who says you’re not a writer?! I felt every word you wrote. I read all of the entries to my family as we’re driving and I had to stop and compose myself and wipe off my smeared mascara the whole time. You and Tucker and Preston and Parker are a beautiful family and we are all loving and supporting you with our whole hearts. I will not stop praying for Parker’s doctors, nurses and anasthesiologist to be diligent and thorough while he is in their care and until he is back in your arms, healthier than he is now. We love you!

  10. Hi Sarah, Tucker & family
    Our daughter (Sara ( Pose) Bleiweiss filled us in on your son’s upcoming surgery.
    We just want you to know our hearts go out to all of you and we will be saying prayers and wishing you all good blessings.

  11. Hi Sarah,
    A friend of ours from church asked our women’s bible study group to pray for your family. We will be praying as a family daily for Parker as he undergoes this surgery. We pray he gives the dr. steady hands and for a full recovery. I am not always good with words, but I believe in the power of Prayer and our Lord can do amazing things that often seem unimaginable.

  12. Sarah and Tucker,
    Above all days, today all of our thoughts and prayers are with you and your family!
    Take many deep breaths and know your baby is in good hands!
    All of our love.

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