An Outsiders Perspective

I was recently privileged to visit Iain, Seema and John in the Critical Care ICU at St. Louis Children's Hospital.  I thought it may be helpful for all of their friends, family and supporters from all over the world to read an outsiders perspective of what the Hess Family deal with day in and day out.

Momentarily I would like to shift focus from Iain onto Seema and John.  Seema and John's daily schedule is brutal, sleeping when then can, rising early to be by his bedside, staying late until they are comfortable that Iain is settled and stable.  Each day they are inundated with complex medical information from various medical departments: Pulmonologists, Neurologists, Nephrologists, ENT Doctors, ICU Critical Care Doctors, ICU Surgical Doctors, Physical and Occupational Therapists etc etc.

We all love our children, but thankfully most of us will never have to see their child go through what Iain has had to go through.  Seema and John's intense love for Iain will in my mind lead to his full recovery.  I watched as Seema and John would lean over their son with words of love and encouragement to keep fighting through all the setbacks, of which there have been many.  They regularly share your comments from the blog and guest book.  They are now working with Iain to try to get him to write down his needs and concerns.  Naturally, Iain is scared, Seema and John allay his fears with kind, loving, and encouraging words, often providing explanations of what all the tubes, lines, etc are.

Last Thursday Seema and John once again had to witness Iain's very quick decline, frankly something I personally hope I never have to see again.  Somehow, these incredible parents held it together on the outside even though it was clear they were bravely internalizing their worst fears.  Once the amazing medical team had again stabilized Iain, Seema and John calmly and serenely slipped back into their role as loving parents, holding Iain's hands, looking into his eyes and whispering words of love and encouragement.

To sum up, having been up and close personal to Iain the last few days it is virtually impossible to describe what an incredible fighter this young man is.  In addition, I wish each and every one of you could see what amazing parents John and Seema are.  They are unwavering in their love and commitment to their son.  To be very blunt many relationships would struggle under these extreme circumstances NOT Seema and John.  They have strong communication skills and a clear sense of closeness as a couple and ultimately they are joined on what is going to be a very long journey with Iain to his full recovery.

Upon leaving yesterday I held Iain's hand, looked into his eyes and we had a wonderful exchange culminating in him giving me a thumbs up.  I have never been happier to see a "thumbs up"!


Please keep sending your positive comments on the blog and I can't end without thanking all of you who have donated to COTA in Iain's honor.  If you still wish to donate please click on the "GIVE NOW" link.

-- Sarah


  • Steve Van Wormer

    I am blessed to have known John and Seema and Iain for over a decade. It goes without saying how amazing and resilient Iain is... but your words perfectly describe what strong parents John and Seema are as well. Not sure what is amazing me more in reading these blogs.... how blessed they are to have such a great transplant team, the amount of strength Iain has as a phighter though this ordeal - or how much grace we can see in these parents! All the best Hess family!

  • Kris Kamali

    Seema and John - I am just returning from spending the week with Casey (my 16 year old) at UCSF pediatric hospital receiving infusions for her chronic migraine. Every day I read your blog to her, and every day we watched the helicopter land and we thought of Iain. When her IV failed and she was poked 6 more times for a new one, as torturous as it was, I thought of you and Iain and all you've endured. You are strong and persevere because you have no other choice. Our children inspire us to be more than we knew capable because there is an inner force that pushes us on. Thank you for being my inspiration as a parent and know that Iain's reach is wider than you likely realize. Our love and prayers are with you every day. - Kris Kamali

  • philmac

    Hi Sarah - thank you so much for your comments - they are certainly an amazing family :-)

  • Berk Family

    Superbowl is starting, and it just makes us think again: we are missing all of you!!

  • dzimmerman

    Amen, Sarah, and continued strength to all involved! Loving the thumbs up! Diana

  • davisne

    I've read this three times now and have gotten chills every time. Thank you so much for your perspective. It's also reassuring to know that while they're taking care of Iain, friends like you are taking care of them.

Leave a Comment