My heart is heavy as I write this blog entry, but my hope is that will inspire you to be grateful and to use that gratitude to help another mother.
Perspective, unfortunately, changes all too quickly when babies are involved. You complain on Facebook about a fever, a teething toddler, a baby who won’t sleep through the night, a dog who eats everything out of you kids’ hands, some article you read about some food that isn’t good for them. These are your *small* problems that feel so huge you must share them with everyone. I’m guilty…I do it all of the time.
But I’m going to try to stop….because of Natalie…because of Gus (King Gus as they call him)…because those *small* things seem even smaller suddenly. In fact, they seem so insignificant that you feel shamed that you made such a big deal out of them.
Let Me tell you about Natalie.
I have known Natalie for his long as I can remember. When I think of Natalie it’s always in parentheses. Something like this if you will….
I went over to Brook (and Natalie’s) house today.
I walked the track at school tonight with Brook (and Natalie).
Brook (and Natalie) were at the gymnastics meet today.
Brook (and Natalie) came to my ice skating party.
And even now, Mom goes to lunch every Tuesday at Pizza Hut with Brook (and Natalie’s) mom.
Natalie is just 3 years younger than me, her sister Brook is just 1 year younger. I, literally, grew up with them. Our moms are still best friends.
Natalie lives in Portland with her husband, Dennis, where they operate a family bar together while she works full-time in counseling. Around the time I was giving birth to Reeve, she became pregnant with her son. Her pregnancy was healthy, happy and she had no reason to suspect she would have any issues. However, when Gus was born he was diagnosed with CVM (Cytomegalovirus), a 1 in a million disease.
Here is Gus’ story in Natalie’s words..
Gus was born on 12/29/12 at 7:40 pm. Gus weighted 6 pounds and 2 ounces. He was 18 1/4 inches long. Gus is named after Dennis’ grandfather, John Gustafson. Michael is from Gus’s Grandpa Vertin. He was officially diagnosed with CMV on Wednesday, January 2, 2013. Being diagnosed with CMV means that Gus has water on his frontal lobe and on his cerebellum. Physically, Gus is fine. He looks perfect, but his brain is not. Gus cannot hear or see. Yes, he does have brain damage from the virus. He will not live a full life. His mother received the virus during her first trimester (it was a fluke and a one in a million chances of this happening). His symptoms before being diagnosed included: change in body temperature and not passing his hearing test. We are thankful for the nursing staff and Dr. Anderson at Kaiser Hospital who found these symptoms before taking Gus home. The news is heartbreaking, but we are finding strength and acceptance in Gus’s condition.
Gus came home on Friday, January 4, 2013 in the afternoon. He received wonderful care from the nurses and Dr. Rabin at St. Vincent’s NICU. Gus is nursing and gaining weight. He does get a little bit of baby formula that we call his “dessert”. Gus LOVES to be held and cuddled. Our family and friends have been a major help and a big support. Dennis and I are very blessed with a great support system.
Gus is under hospice care with Legacy Health. He will meet with his pediatrician next week. Dr. Miles has seen previous babies with CMV. Dennis and I are taking it day by day, because that is all we can do. Along with loving and caring for Gus. We are praying for strength, hope, and acceptance. Just remember that Gus’s mom is a Vertin…and that means she is strong and energetic and has a lot of faith. Gus’s dad will always keep his mom laughing. Gus’s parents will have his good days and bad days. Most importantly, they will always have each other. Let’s hope the good days out weigh the bad ones. Gus was baptized by Father Francis at St. Vincent’s Hospital. Please keep us in your prayers and daily thoughts. We are thankful for our support system…in Portland and across the country. I will do my best keeping up this page with Gus’s progress with CMV. I will post pictures too! Please just send us good vibes and keep us in your prayers. We are lucky to have Gus in our lives, even though it will be a short time.
Here is Gus…he’s absolutely gorgeous!
My hope in sharing this story with you is this.
Not that you will be sad. Not that you will feel badly for Natalie and her family, they don’t want that. They aren’t those kind of people…they will find the lesson, the joy that Gus brings into their life (no matter how short or difficult) and turn it into a testimony of God’s love…of how every life counts and how every gift from God is a blessing.
My hope is that you pray for Natalie. She is of devout Faith and it’s something that I take comfort in knowing will help her through this indescribable time. She told me she doesn’t cry around Gus. She doesn’t want him to feel her depressed energy. I can’t imagine that strength. It means that behind closed doors she lets go and feels pain so immense. I hope you pray for Dennis, a daddy who would do anything for his family I am told. Pray for their families….they are her support system and in pain too. Pray for Gus…that he is comfortable and knows no pain. Natalie asks for your thoughts and prayers, they are helping her get by. I don’t believe that we can pray too much for a little spirit, that a stranger’s prayers mean less, that miracles can’t happen and that your positive energy can’t make a difference….IT CAN…IT WILL!
I encourage you to visit Gus’ Care Page and find their story under the name GusMartin (one word). It IS a sad story, but the beauty in all of this is that Natalie knows that God’s need for Gus to be with Him is far greater than that of her arms to hold him. It’s hard, no doubt….but it’s that Faith and your support that helps make this possible for her.
Natalie told me that she finds com fort in the Prayer of St. Francis. Please read this prayer and take time to say it aloud for Gus.
- Lord, make me an instrument of your peace.
- Where there is hatred, let me sow love.
- Where there is injury, pardon.
- Where there is doubt, faith.
- Where there is despair, hope.
- Where there is darkness, light.
- Where there is sadness, joy.
- O Divine Master,
- grant that I may not so much seek to be consoled, as to console;
- to be understood, as to understand;
- to be loved, as to love.
- For it is in giving that we receive.
- It is in pardoning that we are pardoned,
- and it is in dying that we are born to Eternal Life.
Please, if you know Natalie, take a minute to read her CarePage.
Also, friends of the family have set up a Meal Baby website where you can prepare a meal for the family, purchase gift cards to restaurants or pre-prepared foods so that they don’t have to spend their time cooking, but can focus on Gus. I encourage you to visit THIS link to support them in this way as well.
It would be really easy to read this, cry or hug your babies a little tighter tonight, but it would be a lot more meaningful to show your love & support by actually doing something.
Go on, hop on over to her Facebook page if you are friends with her (as many of you are) or leave a message of hope on her Care Page or just take a second to keep them in your thoughts.
….and, of course, hug your babies a little tighter afterward.