A few weeks ago, I took my son Max and my daughter Coral to the park. They are 16 month old twins and they were born 3 months early. For my daughter this was no big deal; she had been to the park many times — but for my son this was his first trip so I made a humongous deal out of it.
First, I picked the date – I started planning immediately after he came home from the hospital. It had to be soon but we couldn’t have anything else that day and very few trips that week. It takes a lot to get Max places because he relies on a ventilator for breathing and a bunch of other machines and equipment for safety. We also travel with a nurse; they are in our home 17 hours a day and thank god, my insurance and the Waiver for medically fragile technology-dependent children for them.
Then I wrote a press release: “MAX VISITS PARK ! 15 month old Hyde Parker will visit park for first time after a life time in the hospital.
After spending the whole of his life in hospitals, Max Allender, 16 months, is finally home and reunited with his twin sister Coral and family. Born at 26 weeks, these young Hyde Parkers are home and planning a much overdue first outing to Bixler play lot on Friday August 9, weather permitting. Max’s family welcomes the community to join them for the walk over and the time at the park. They will be leaving from the corner of 61st and University at about 10am on their inaugural stroll to 57th street and Kenwood Ave for a swing and a slide.”
It was my first. I think it did its job because about 15 reporters showed up. And then we went to the park, it was a huge production, but totally worth it.
Max and Coral were born 3 months early, Max suffered three blows to his lungs including the prematurity, a bacterial pneumonia and a parasitic infection of toxoplasmosis. Max was placed on a ventilator in the first few days of his life and then put into an induced coma for many weeks. I held him only once, when he was 4 days old, and then not again until he was nearly 4 months old. Max and his sister were born at NorthShore University Healthsystems Evanston Hospital and they stayed there in the Infant Special Care Unit (ISCU) until Coral went home on their due date and Max got transferred to Ann and Robert H. Lurie Children’s’ Hospital a month later in August of 2012. Max stayed in the NICU and the PICU at Lurie, until May of this year when he was finally stable enough to be released from the intensive care unit. From there he transferred to a transitional care facility called Almost Home where his Grandmother and Auntie and I finished getting our training on how to take care of him and all of his equipment.
Max continues to rely on the ventilator and a tracheotomy for breathing. Since his homecoming on July 9, Max has been flourishing and sprinting towards a full recovery. I’m confident that he will not need the vent by the time he enters kindergarten.
More than 500 families in Illinois rely on the Waiver in order to have their ventilator-dependent children home where they can thrive and experience a normal home life. It takes a lot of organization, planning and people just to do a mundane thing like get to the dining room for lunch or to go to the park for a fun morning, but the payoff is enormous – just like Max’s grin and dimples.
It takes a village to raise a child, especially to raise a child like Max, who has fought so hard for his life already. I invite you to visit our blog and other links to become part of this village in any way you can.
My journey into motherhood has been rocky (like the Himalayas) but it was the absolute best decision I ever made in my life. With all of the terrifying roller coaster extremes that the last 2 years have brought to my life I would do it all over again – and I just might.
Thanks to you all for being my sisters in spirit, for your love and support, for your wisdom and patients, and your strength and courage.
Jessi, Mama of Coral and Max born March 29, 2012 at 26w4d
Max’s Mom keeps a blog about the experience at http://jessinfamily.wordpress.com/
For more information on the Waiver, visit http://www.savemftdwaiver.com/