Tuesday, May 24

Your road will be made smooth for you by good friends

I was asked to write a short article for our local parent-2-parent newsletter on a 'parent's perspective'.  No theme, no question for the essay, just write on your perspective.  So.... this is what I sent and thought I would share with all my virtual friends too. 

At lunch today, the piece of paper in my fortune cookie said, “Your road will be made smooth for you by good friends”. Wow. I had to read it twice. The second time I co uld smile to myself and reflect on how true that statement has been for me and my family.

And although the fortune didn’t say “my road will disappear completely”, nor did it say “I would begin to happily float on a carpet ride under blue skies down the road”, I was happy to remember how much smoother this road was with good friends.

Our son Tommy has multiple diagnoses. He has Hirschsprung’s disease, Down syndrome, and has Polysaccaride antibody deficiency syndrome. With permanent pulmonary daily care and g-tube feedings for liquids, he is thriving now. He is an open heart surgery survivor and has lost nearly a third of his bowels in a pull-thru surgery. He has outgrown delayed visual maturation and hearing loss issues. He is truly a champion. His diagnoses don’t define him, as all reading this already know. We love him to pieces. His current nicknames include Nugget and Sugar Cube.

We feel his blessing to us has added a depth to our family and to each of us as individuals that is unique. So strongly bonding each of us to one another and to him. And yet we are on a road. The road of raising our son with special healthcare needs. Somedays it feels we are alone and isolated. But that’s just about the time we reach out to friends with honesty about our feelings and needs.

Nearly five years of traveling this road with my family has been difficult at times. Joyful often. And tragic to the point of our son almost dying three times. Elated with his developmental accomplishments. Scary on many occasions with medical procedures. Stressful. Bumpy. A life lived in the extremes of dark stress and sheer bright happiness.

The travels along this road have been refreshed thru friendships. The enjoyment of a dinner dropped by after a long hospital stay or a phone call to check in or an email just saying “I’m thinking of you”. Reading blogs of other families similar to ours, and the friendships that develop, either close by or far away inspires and encourages our family. And makes our road just a bit smoother. Hearing friends talk about solutions to sleep issues for children like Tommy who don’t really sleep much, or how to swim at the aquatic center with a G-tube, or hearing a friend explain for the tenth time how Hirschsprung’s disease really never is fixed. Sharing experiences, friendship thru common bonds and exchanging small pearls of wisdom make the road smooth.

Friendships include the harder conversations that good friends bring. Of “why don’t you step away and find some time to self care and reenergize?” Or, “have you called Medicaid eligibility yet”. Or “perhaps you might find some mental health help and a new set of coping skills by seeing a counselor”. All actual conversations started by my friends and the outcomes of all have made our road so much smoother.

Good friends to me, as a parent of a child with special healthcare needs, look slightly different now then five years ago when we received a prenatal diagnosis. Gone are the days of flexibility and spontaneity. Here to stay are the friends that understand even well made plans for an afternoon out can get tabled when Tommy is ill and he wants only mommy. Good friends last the lifetime of the road. And we are overjoyed he has a lifetime.

When a friend asks “what can I do”. I am ready with just one thing that might make our road smoother. For a few years, in the beginning, I told friends I didn’t need their help. Almost because not having a conversation was easier then, but now I realize how much better we are by talking things out rather than avoiding issues and needs. Now when they ask, I realize they are asking because they care about my family and want me to let them help us. I always have one thing ready in my mind. Sometimes it’s a small chore. Help fold our laundry and we can talk. Maybe a cup of coffee. Maybe asking for a dinner to be dropped off sometime. Help me reorganize Tommy’s medical cabinet. Other times it’s talking on the phone about normal issues, not the extremes, and exchanging encouragement. Sometimes it’s talking about the ugly extremes and getting constructive feedback, as hard as that is sometimes to hear. Even if to only tell a friend, just keep calling me. Our road is made smoother.

Shared by Sandi McMillan, married to Colin and momma to Hannah, Nathan, Thomas and Liam

Tommy Adventures