Sunday, June 17, 2012


This past week, I was asked by Dr. E. if I could talk to Congressman Levin together with her. Congressman Levin was at Children's Hospital to inquire on how the healthcare system works for medically complex children like Jacob including how we pay for his care. The focus was very much on Children's Hospital's role in Jacob's care, and especially the Special Care Clinic which coordinates all of Jacob's care in addition to providing Jacob's primary care. As always when you get interviewed by someone, you feel you only have time to tell a fraction, but I think it went well. Congressman Levin felt my story had to be told over and over again, and he felt his own issues were put into perspective.

Conveniently, Jacob had a doctor's appointment at the same time in the Clinic, so Congressman Levin got to meet with Jacob as well. We then continued on with our doctor's appointment, which was a follow up from Jacob's most recent hospital stay.

We saw one of Dr. E's colleagues this time, who had also cared for Jacob in the hospital during his most recent stay. He had no hurry to return up to the floor to be Attending Physician again, so instead we had a good chat about healthcare system, Special Care Clinic, and Jacob himself. It was very refreshing.

We talked about how you function as a family when you have a family member with very high medical needs like Jacob. This is how we came to talk about the secret ingredient. As the doctor had taken care of Jacob during his most recent hospital stay, he got to interact with us all including Sarah. He had noticed that the secret ingredient in our family is our Dad. He said that what most families with a Special Needs' child do is to be completely absorbed by the care of that child. Siblings come in second. He was amazed to see how Sarah interacts with Jacob, and he was pleased to see that Sarah is completely part of our family. He had noticed how comfortable Dad was interacting with Sarah, and involved in her life. He had of course also noticed that Dad is capable of taking care of everyhing related to Jacob as well. The little and the big stuff.

The way he talked about Joakim, and his role as a Dad, I felt really proud of Joakim. He doesn't shy away from taking several kids to any of Sarah's activities ever. He is as involved in her life as I am. The same goes for Jacob. I might be doing more of the care due to me being home more, but Joakim knows every little detail of his day. He would never shy away from a poopy diaper, deep suctioning, IV antibiotics, watching over Jacob at night or splitting the time in the hospital. He is a complete partner when it comes to our kiddos. He has great insight, and he always looks out for the best for both of them. Joakim is our secret ingredient.

Happy Father's Day!

Love, Maria.


  1. I love, love, love your writing. I know that our lives are so different in many ways but you make me understand you so well. And YAY to involved Dads! They are so important and such a blessing to our children! Happy Father's Day Joakim!

  2. Thank you, Nadia! We're so happy to have you all in our lives. Jacob will be so happy, if you stop by this week!