Marchese Family: Plan Interrupted

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

Friday, September 26, 2008

Plan Interrupted

Whew! What a few months it has been.... In month four of Danelle's pregnancy we had some weird things occur that led us to investigate her a bit more thoroughly. I would call Danelle to check in with her, and she would be asleep until 1 or 2 pm each and every day- and sounded so bitchy and out of it whenever we spoke. Often times, I would call her home phone and a random guy would answer, telling me that Danelle wasn't home (at 10pm!!) even though I could hear her two boys crying in the background. Eventually, I called again and some guy asked me if I wanted to come over to her house to party.... I talked with my family about the experiences and one person brought up drug use. I was so desperate to believe that it wasn't true, that I put it out of my mind for some time. Eventually, Felix and I agreed that we needed to know- especially if it was something far worse than we expected. Because Danelle had signed over Medical Power of Attorney I called her physician and explained my concerns and asked for a random drug test. Three days later we heard back- positive for methamphetamine, marijuana, alcohol and nicotine. I was heartbroken! After researching possible complications and speaking with the doctor, we agreed to back out of the adoption process- it broke our hearts, but it felt like the right thing to do at the time. We went to Danelle's house to tell her in person. She was IRATE! She couldn't believe that the doctor would tell us, as it was her private information. She threatened to sue the doctor. Over and over again, I simply asked- "Is it true?" And she never denied it.... We told her it would be best if she found another family to adopt her child. She called us later that day, asking if we really wanted to back out, as she had found another family, but she didn't like them as much. We again emphasized that we didn't want to proceed. I moped for WEEKS! I never really felt like I would get over this....

Fast forward two months, and we decided to reconsider. We've hoped and prayed, talked and thought and this really is a blessing- one we're so thankful for! So, in January we'll be the proud parents of.... wait for it.... a baby girl!!!

The next doctor's appointment will be on October 10th. We're so excited, nervous and anxious- there is just so much left to do- we have to paint, decorate, stock up on diapers, buy a bed set, etc. Who knew that picking a car seat could be more difficult than picking out a wedding dress?!? As much as I complain, I'm really filled with bliss and feel quite lucky and blessed to be able to whine about these things. It is like finally being part of a club that I've heard so much about. I'm having dinner with Danelle's sister and family tomorrow evening- it's almost like a blind date- I'm nervous as a school girl! I'll keep you updated. Signing off for now...

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