Felix and I have been calling the greater Phoenix area home for the past 8 years, after living in Northern California. After struggling with infertility for years (unexplained male infertility and PCOS), we adopted our tiny miracles. Felix works in the insurance industry (commercial property claims) and I am a stay-at-home mom. Felix thrives in nature- hiking, fishing, camping, you name it! Having grown up in Jackson Hole, Wyoming is probably to blame. Opposites must attract. I prefer to stay indoors- dancing, shopping, surfin' the net, listening to music. My hobbies probably stem from growing up outside San Francisco. We love great beer, new travel locales, live music,Eric Hutchinson , and each other- not in that order.
Grace was born in December 2008, approximately 10 weeks premature. She was barely 3 pounds and within 24 hours of birth, was life-flighted to Phoenix Children's Hospital. There, she was diagnosed with Tetralogy of Fallot, with Pulmonary Atresia, MAPCAS. Her first surgery occured at 1 month of life (BT Shunt) and her second at 7 months (12 mm conduit placement). Her 3rd surgery was performed at Stanford (LPCH) and was by far the most successful! Grace still has quite a few obstacles to overcome, but we are so in awe and full of pride over the beautiful, healthy young girl we call daughter.
Gavin was born in January 2010, a seemingly healthy 6+ pound baby boy. He took us by surprise a bit, as we had only been on the "waiting list" for 2 weeks! Gavin had rough beginnings- formula allergies, chronic fussiness, frequent ear infections, and finally diagnoses: Cerebral Palsy, Eosinophilic Esophagitis, and severe Sensory Processing Disorder. You'd never know these days! He's symptom free of CP and in remission of EoE! His SPD continues to give us a wild ride, but there's no sweeter boy than mine to make the journey with!
Special Needs Thoughts...
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
-Emily Perl Kinglsey
What does it mean to be the parent of a child with a heart defect?
It means going into your baby's room a dozen times a night just to check and see if he is breathing.
It means standing over the crib and watching for the chest to rise and fall and when you don't see it move you begin to panic and put your head down close to the baby's face to try to hear him breathe.
It means that when you don't see the chest move and you don't hear the breathing (because your own heart's beating is drowning out any other sound in the room) you put your finger under the baby's nose to feel the warm air on your finger - until you wake the baby and he stirs - and you're thankful so thankful that he's still with you.
It means waking up with a start every morning, jumping out of bed and running to your baby's room wondering why he isn't crying yet? It means feeling a huge sense of relief when he hears you and opens his eyes and smiles, It means saying a prayer of thanks for another day.
It means measuring out his medication and panicking if he spits some of it out, How much did he spit out anyway? 1cc? 2 or 3? And wondering if you should guesstimate how much more he should have and worrying about overmedicating.
It means checking his nailbeds against your own to determine how blue he is today, It means asking your husband, your mother, your sister, "Do his lips look blue to you?"
It means snuggling him in an extra blanket for fear he wont be warm enough.
It means worrying that even a sniffle could cause an infection that would harm the heart.
It means taking your baby to the doctor and then worrying that the baby will get something even worse from being in the waiting room, so it means walking back and forth and back and forth in the corridor until the nurse calls your baby's name and takes you straight back to the examination room.
It means knowing that everyday is a blessing and a gift, it means knowing that you are the luckiest person in the world just to be a parent, it means cherishing every moment, every breath with such an intensity that you feel tears come to your eyes for no apparent reason.
It means praying for a miracle to save your baby's life.
It means praying that your marriage is strong enough to endure the hospitalizations, separations, and the grief.
It means your own heart knows a pain no parent should know.
It means feeling weak and helpless and angry and depressed because your child's fate is out of your hands, It means feeling strong and determined and brave because you know you have to be.
It means your love knows new unlimited boundaries, it means your pride in your child's accomplishments is unparalleled, It means your pain has taught you a deeper sense of compassion and understanding than you ever imagined.
It means we are united by the same feelings, it means that we all know the mixed up emotions of living with death-but more importantly of living with Life.
It means that even though we are strangers we are more to each other than friends could ever be.
Today I toast Cinco de Mayo with a Mexican beer (ole!) and a huge piece of love for what this day means for us. Four years ago today, the state of Arizona declared the boy who I had held since birth, that I would be, the first person to ever feed him, his forever mother. Vincenzo Carmelo became Gavin Wyatt. Before everyone goes up in arms about the name change... We named Grace Loren. Both her first and middle names- we chose. Her mother allowed and trusted us enough to raise her daughter and give her daughter a name. With Gavin we had a similar opportunity, but I felt so drawn in and connected to his birth parents story, that I asked them to please give him a name. We all knew that name would change to Gavin, we asked their permission for the name before we decided (Grant, Griffen, and others were in the running...) Gavin's birthfather's name is Vince, and Felix's father's middle name is Vincent- Gavin felt like a perfect for to honor the "Vin". Wyatt is Classic American. I like to think we chose a play on my maiden name, Waite, since I was the last of the Waite clan. Wyatt also resembled phonetically my maternal grandfather's first name, Wijbrand (or why-brand). Gavin Wyatt- we loved you before we knew you. You gave us a run in the beginning- but man am I ever thankful for you. Today, the day we became a forever family- know you are so loved. Love you forever, baby-cat. (I'm scratching your hand). Someday you'll read this and only you will understand what that means. You are forever my special boy.
Had our checkup with Dr.. Shah today. Cardiology went reasonably well. A few more worries ahead, but we'll tackle them as they come up. Next big surgery could be as soon as a couple years to five years, ten if we are pushing our luck. Right side of the heart is growing thicker, this is to be expected as her heart continues to work harder. This is the same side that was shaved down at Stanford during the last surgery. The next procedure that they will have to do is to place pressure inside of her pulmonary artery conduit to be sure that her coronary arteries aren't affected. If her coronary arteries are affected she will always need open-heart surgery to replace the valve. If her coronary arteries are not affected during this test then she should be a candidate for the melody valve which is something that will be done through her femoral artery. She also has a right bundle branch block that were monitoring it is about the 120s now and they will get worried when it approaches 180s. Her valve leak is mild to moderate, and so her murmur is back again. We'll check back in 6 months. If she faints at any point, based on her anatomy, we need to get to hospital and notify cardiology ASAP.
This isn't bad news. It's kinda great. But it doesn't feel that way. With cardiac kids, I feel like there is never a clear answer. When is surgery? Ask one time, it will be 10 years, the 2nd answer five years and maybe a third try, and you'll get 3 years. I know it's not a precise guess and that only Gracie's body decides when it's time to misbehave, but I feel like I'm always waiting for the shoe to drop. Even though there is absolutely nothing for me to stress about at this exact moment in time, I can't help but worry about what if and the next open heart surgery. She's beginning to ask questions, and say that she has what the doc is calling "phan chest pains". Anytime we go anywhere just grace and I, she assumes we're off to some cardiology needle-filled procedure. I have totally broken this little girls trust. If she asks me if she has to have surgery again, I hate that I don't have the answer for her, and I won't. Some things are just frustrating. Can I ever heal her fears and anxiety? Can anyone? I'm struggling, lately. It's as if now that the dust has settled physically for a bit, my emotions have finally become unraveled. I'm finally angry, and sad, and scared and hurt. And angry. And I don't want to be anymore. Made an appointment to talk with someone this month. She's also an adoptive special needs mom- hoping for some insight. For now, God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. Amen.