One year ago today, we received devastating news about our son Parker. It was a day that changed our lives forever. I’ve talked about it with close friends and family, but I have never shared what it was like being told your child is gravely ill. There is a lesson to be learned from Parker’s story….so grab a tissue, here it goes.
It was Tuesday, July 30th, a typical day in the Skrysak household. I was on maternity leave, so I spent my days visiting Peyton and Parker in the Nicu. I stopped by in the morning and read them books, then went to run errands. I remember running into one of the Nicu nurses and telling her that we finally felt like P&P were on the road to good health. They were 5 weeks old and I thought things were looking up.
Ryan and I returned to the Nicu for our normal evening visit. That’s when we had a chance to hold our children, what is often referred to as “Kangaroo Care”. We had a meeting with their doctor, something we did ever few weeks. Dr. Batton shared his update on Peyton and how she was doing, then moved on to Parker. He mentioned an X-ray of Parker’s head, and at that moment, our lives changed forever. Parker was diagnosed with PVL, a brain injury that is found in infants (in his case, a severe PVL). He had surgery at three weeks old, due to an intestinal condition called NEC. Doctors think the stress of surgery possibly caused the brain injury.
What would you do if you were told that your child would be paralyzed? It was a hard pill to swallow. He survived a major surgery and was putting on weight and seemed to be doing better. As we were told the news, a lump formed in my throat. Ryan and I were left in the room to gather our thoughts. And that’s when we collapsed, hysterically crying. We were completely blindsided by the diagnosis. Parker had movement in his legs, how could be become paralyzed? We later learned that the movement was likely from reflexes and that his paralyzation would slowly take hold over the coming the weeks.
Over the next few days, we learned more about his condition and the severity of our child’s health. It wasn’t just the brain injury. Parker would likely develop cerebral palsy and could very well be mentally handicapped. This is all on top of Parker needing another surgery, in which doctors didn’t thing he would survive. It was at that point when our doctors began discussing further treatment. Do we continue with life-saving treatment or let Parker go? It’s a decision that I wish no parent would ever have to make. And it’s something I will wrestle with for the rest of my life. How can you say goodbye to your child? Yet at the same time, how could you see your child suffer in pain?
All of these thoughts raced through my head as we were forced to face a tough reality. Parker was being kept alive by doctors. He couldn’t breath on his own. He couldn’t even digest any food. And he wasn’t expected to survive another surgery. I believe in miracles (just look at Peyton), but science was stacked against us. Parker’s health was irreversible. As each day passed, our realization became clearer…We had to let go of Parker. It wasn’t a matter of if, it only became a matter of when. I wanted to hold my perfect son every single day. I couldn’t imagine a moment when he wouldn’t be nestled on my chest, clinging to his mom. We knew doctors were keeping him alive, but I just didn’t want to let go. Why was his sister thriving in her early life, yet Parker was fighting for each breath? We already lost one of our triplets, why would we have to go through this again?
I wouldn’t say the days leading up to Parker’s death got easier, but we slowly began to accept the reality. The day after we learned of Parker’s health, my mom flew back to Illinois to help out. We bought a video camera and began taping non-stop. Mundane moments like changing diapers or a simple yawn, became moments that we will cherish forever. A local couple (parents of multiples) offered to take professional pictures of P&P, free of charge. Jim and Jennifer Grimaldi dropped everything to capture some amazing moments in the Nicu. Take a look at the pictures below. Despite the absolute heartbreak we were going through, you can see how special that day was for our family.
After two weeks, we had our families fly out. And together, on August 16, 2013, we said goodbye to our only son, Parker Scott. As I look back to a year ago today, I remember asking Ryan, “If Parker was going to die, why couldn’t it have been like Abby? We didn’t have a choice with Abby. Her lugs weren’t strong enough, she couldn’t survive. This isn’t fair”. But as I look back to a year ago, I realize why. God allowed us two precious months with our son. It’s not enough, but every waking moment we had with him is something we will cherish forever. Those two months gave us a window into his world. Parker showed us his calm and laid back personality, the complete opposite from his sister Peyton! Parker showed us that strength isn’t measured in weight, but in the will to live. All three of my children were fighters well before they were out of the womb. And that’s what I will remember most about Parker and Abby…they had more fight in them than anyone I will ever know. That’s with the exception of our survivor. I will always see a piece of P & A living on through Peyton. Please hug your children and make sure you tell your family you love them. Through my triplets, I have learned how precious each day of life truly is.
Thank you for all of the kind words and prayers. This past month has been extremely difficult for me and Ryan…and I know the coming days will be even tougher. But life doesn’t stop for the rest of the world. Ryan and I keep on trucking along, working and getting through life one day at a time. You may see me with puffier eyes on camera or missing from the news for a few days, but I’m OK. I just miss my children. (And please keep the negative comments to yourself. I’ve been an open book with my journey and decided to share this experience in hopes of helping others.)
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[…] I want to thank you all for the kind and heartfelt comments and emails that you sent me about Parker’s story. It was extremely hard going public, but I wanted to do it. It’s an important part of our […]
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[…] to survive the first night of her life, yet here she is, looking nothing like a one pound child. Her brother, Parker, would have had life long issues and constant doctor’s appointments. Yet Peyton, for some odd […]
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[…] To read Parker’s Story and why he passed away just shy of two months old, click the link: Parker’s Story […]
You are an amazing strong inspirational momma/woman. Thank you for sharing your journey and your child’s lives with us. Prayers and hugs. ❤️
Stacey, you and your husband are truly amazing and an inspiration to others. God bless you.
I can’t even begin to imagine what your journey has been like. Thank you so much for sharing your story and Peyton’s amazing journey with us. I look forward to your updates and keep your family in my prayers.
Stacey, you’re an amazingly strong mother/woman. Bless you for all that you’ve gone through. Thank you for sharing it with us.
Aww thank you for sharing your story!
Hi Peyton 🙂
Stacey, I have replied to your posts several times…but THIS time it really brought back memories…..of our daughter …being told there was no hope….so we named her “Hope”….of being told she had no feeling from chest area down…that she would never walk yet her little legs would move….and on and on…..that we could go to Chicago or another big hospital and they would be glad to operate on her but it would just be for learning that she couldn’t be helped…our decision to let her go or to go through a surgery they said wouldn’t change anything…..its been 43 years and lots of progress in medicine since then but I feel what you are saying. My thoughts and prayers are with you!!!! I love watching you on TV….seeing that smile for the camera….yet knowing that you have a heartache to deal with. God is using you to get to people that others couldn’t reach…..not that it makes it feel better for you at this time. You have a precious family!!!!!!
Sharon, Thanks for kind words and for sharing your story. God bless!
Your one of the strongest woman I know. May god continue to bless your family. By the way your little girl is beautiful.
God continues to Bless you through your beautiful daughter, Peyton and your precious memories of Parker and Abby! Thank you for sharing your story and the pictures of your wonderful family! I pray that God will give you and Ryan, His Peace and Comfort in the coming month and His Joy at watching little Peyton grow and flourish! Sending much love and (((HUGS))) to you all!
Such a toughing story,thanks for sharing.I`m glad you had time to take pictures and some moments with Parker.Sending hugs to you all.
jane
You are an inspiration. I don’t know how I would deal with the death of one of my children, let alone two. I know that it is tough, but know that you have been in my thoughts and prayers since I first started reading about your pregnancy through HVFH. Thank you for being open and sharing!
God bless you and your little family!! Stay strong and thanks for sharing your story. I have twin granddaughters in the NICU dept at OSF..Peoria, I’ll right now.
Prayers for you & your family always! A favorite quote I read is “For those who understand, no explanation is needed. For those who don’t understand, no explanation is possible.” We all must walk our own journey. There is no wrong or right way. Thinking of you.
Goodness. That was hard enough to read, I can’t imagine living it. God bless your family for all you’ve been through.
We lost twins at 2 days old 37 years ago. They, too, were born too early and their lungs were not strong enough to survive. Losing your children is not something any parent should have to experience. Not a day goes by that I do not think of them and wonder what life would have been like if they had not been called to their Heavenly Father. We have raised 3 beautiful children and are very blessed. We also have 2 special angels. You and Ryan are good parents. I enjoy reading your posts about Your beautiful Peyton. May God continue to hold you & Ryan in His arms.
This is for Peyton,
Hi precious one, you live a strong good life for those awesome parent’s you were blessed with! Live for Abby and Parker, because they will live on in you! You have two precious guardian Angel’s watching over you, mommy and daddy.
God has chosen you to remain here on earth and he chose Abby and Parker to walk beside him in heaven! I truly believe everything happens for a reason, you may not know yet why, but someday you will! God bless you little one may you have one awesome life!!!!:-) 🙂 🙂 🙂
This is so touching Stacey. I’m so sorry this heartbreak has been part of your journey but it’s allowed your strength to shine through. You, Ryan and Peyton are in my thoughts.
I cannot even imagine what it was like! But I do believe that Parker felt the love of you all and will always. I am in awe of your strength to share this with us. May God continue to work in your life to comfort you whenever you need it.
Peyton is just the cutest! Thanks again!
Thank you for sharing this blog. God Bless you All.
Such sweet little spirits! Praying for you all. I believe you both made a very brave and right decsion. Praying for peace and affirmation for your family
Hi stacey,
I learned of your story from my sister-in-law, Emily Montgomery. I too lost my baby when she was 33 days old. And just like your story with Parker, we had to make the haunting decision to let our daughter go. Your post is like reading my own words. I still wake up in the middle of the night wondering if we made the right decision and if we tried everything, but I know in my heart our daughter was suffering and we had I let her be in peace. I just wanted to say thank you for sharing and you are not alone in your feelings. My daughter daughter will be gone for 3 years in October, and as I’m sure you’ve learned, the pain becomes a bit more manageable over time. Sending strength to you and your family.
Stephanie Clark
Stephanie, I remember Emily telling me about your family when my children were about a month old. I’m happy to hear that you had a rainbow baby and you give me hope that life will get easier for me. Thank you so much for writing.
Stacey
I can not even imagine what you have gone through in this last year. I admire your strength and thank you for alowing us to come along on your journey. Looking forward to watching Miss P grow. Shame on anyone for making negative comments! Still miss you here in TC <3
You are an inspiration to me and millions of people. I am so sorry for your loss. I enjoy seeing all of your photos of Peyton and how she is changing everyday. She is such a blessing from God given to you and your husband. Parker and Abby are Peyton’s Guardian Angles watching over her always. You have been so strong during a difficult time. Thanks for letting us in to your private family business and giving us the info we need if this ever happened to us. I have learned a lot from your experiences. THANK YOU
Bridget Whitmer
Beautiful heart wrenching story ~ you have two special angels waiting for you in Heaven. May your family and sweet memories bring you peace
Stacy – This is very difficult to read with the black zigzag lines in the background.
Hi Judi, I have someone taking a look at the website. For most people, it looks fine. But for a few, like you. the background shows up over the writing. Hopefully it will be figured out today!
Thank you for sharing your heartaches and joys. You & Ryan are such strong individuals, yet willing to share with us your weaknesses. The memories you have of Parker & Abby will forever be part of your lives as well as Peyton’s. The road you are journeying is not an easy one, but continue to take one step at a time forward. With each step you take, may you feel God’s presence with you. Know that when you are weak, God will hold you up. When you are tired, God will carry you. Life is hard to understand, but I pray that God will continue to bring you comfort & strength with each day. May you He show you His love in new ways every day. You & Ryan have definitely made a difference in so many lives that you have touched. Hugs & prayers continuing for you, Ryan & Peyton.
Amazing….
This was one powerful “post.” You continue to blow me away with your courage. Thanks so much for sharing more about Parker’s story as well as the depth of your selfless, remarkable, and beautiful love for him. You and Ryan are absolutely amazing. I have no doubt this part of your story is one that too many people can relate to; and with that I’m sure your willingness to share provides hope and courage.
I miss little Parker. Even though I never met the little guy, I so loved seeing pictures of Parker and Peyton. They were so tiny, yet they impacted my life and heart day after day as I searched for any news about them. I know losing Abby first, and than Parker was worse than a sword to your heart. In sharing your pain, you are helping parents who have, or will, experience this with their children. I know that God gave you both the strength to love Parker and cheer for him, and eventually to release him to go to heaven. I have no words that can take the pain away, but know that I love you all and will never stop praying for the healing and comfort only God can give to you. I do believe that it is not how many days you live, but how you love and impact others in those days that really makes a difference. Parker made a difference. Abby made a difference. You and Ryan are making a huge difference. Thank you for sharing, Stacey. Your story is a powerful story of love. Love, Aunt Mary
You are amazing and all of your children are beautiful! As a mommy who lost all three if her triplets, I can relate on a tiny level. So thankful for the time you had (have) with each of your sweet babies!
Who could say anything negative to you .Your story is so personal but you share your family with us in pictures and the stories, God has giving you the courage to tell your story to help others. What joy you had with this little guy for 2 months memories forever. We watch your little P grow and do things and know that her brother and sister look down each day and encourage her on what ever she is doing. God Bless you and your family and keep the stories coming so we can all see how you are all doing.
Beautiful! Thank you for always being so open and honest with your readers. A Decatur-native, I starting reading your updates and blog over a year ago and have cried with you many times. I, too, suffered a loss and can relate to much of what you said above. The pain never goes away, but you do learn to live again. And appreciate your survivors. Thank you for putting into words the feelings of so many.
Thanks for continuing to share your story with us, both the sad and happy times. My daughter and son-in-law had to make the same decision 5 1/2 years ago when we said good bye to our grandson Grant who was 3 days old. Our son and daughter law son Cole was still born a year ago. I have been reading the comments from others who have lost their children, and my hope is that Grant, Cole, Abby, Parker along with the other children have found each other and have play dates everyday in their heavenly playground. My thoughts and prayers continue to you and Ryan. Hi Peyton from the Avery’s.
Stacey,
At week 18 my wife and I were told that 1 of our twin daughters, Karly would be born with spina bifida. It was an absolute heart break. How did this happen? Was it something we had done? Was it something we had not done? We were told that she may never walk, may never crawl, eat, or breathe on her own. They offered us to do a selective termination. Absolutely not, it was not an option. God gave us these twins for a reason. Well 5 weeks before we were scheduled to do a C-section, they had to do an emergency C-section because Karly was not responding very well. After delivery they had to restart her heart twice. She was then taken to Carle NICU where she was evaluated by the neurosurgeon and her surgery was scheduled for the next day, which happened to be my birthday as well. After surgery she had to lay on her belly for 30 days. Changing a diaper and feeding a newborn while they are on their belly is a difficult challenge. Well, so far my little girl has proven those doctors wrong! , She is now 19 months old and walking!! “There is no giant leap that does it: its a lot of little steps” GOD is AMAZING!! Peyton is a fighter and has an infectious smile. She will prove her doctors wrong too. You and Ryan have been blessed with an angel.
Abby, Parker, and Peyton are all so beautiful! You’re such a strong couple, strong parents. Your children are lucky to have had you!
Hello Miss P you are truly a Blessing and loved by many all around the world. Stacey you are amazing along with your husband. I can’t imagine what you both have went through. Praying for you and your family this weekend.