I’d like to take today, November 7th, to remember the larger village that supports our family.  In particular, I want to recognize groups that have helped my family through the hardest of times.  They made the darkest days a little easier to bear, and shared in every day triumphs that we celebrated through those dark times.

Without our family, we would have been lost.  Our parents gave so much of their time and energy to make our lives easier, and better, during Sullivan’s lifetime.  My in laws took time daily with both of our children, giving us breaks whenever they could.  We lived with them in the beginning of Sullivan’s life and they wrapped us up in their love and support through all that we went through.  It was tense, stressful, heartbreaking at times, but we could not have made it through those first four months TOGETHER without their help.  My own parents took time off of work to be there through the first week in the hospital with Sullivan.  After he was released, they came out once a month for a weekend and gave us what breaks they could.  Toph and I went away for our anniversary that year, and it was largely because our parents (both sets) took it upon themselves to care for our children for the weekend and honestly, they shoved us out the door.  They were not only caring for their grandchildren, but for their children.  We so  needed the time away to recharge.

Our siblings gave us emotional support, and also help with the kids (especially with Jillian).  My brother, who I think has a dislike of phones since I rarely talk with him, was very careful to be sure that I knew I could call him at any time if I needed to talk with him.  He and I may  not be close on a daily basis, but he’s always been there when I needed a shoulder.  My sister in law was always there and ready to be the “Best Aunt in the World” and she helped tremendously with Jillian throughout Sullivan’s life.  She was also always ready to cheer Sullivan on to new accomplishments.  These are just examples of the support our siblings gave us.

Friends of ours and of our families pulled through in amazing ways.  When we brought Sullivan home from the hospital with a trach and a gtube, requiring 24 hour care every day of the week, we had friends bringing us dinner once a week so that we wouldn’t have to worry about it.  We had friends helping us with our daughter in the afternoons so that I was free to concentrate on Sullivan and all the administration details that went along with doctors and insurance.  We had friends mailing and emailing us words of encouragement, sending prayers winging our way from long distances, and holding us in their thoughts with love and support.  Without the encouragement of all of these people, we would have felt very  alone as we struggled along.

Then we get into the groups and organizations that helped us.  The hospital where Sullivan spent a lot of his life was wonderful.  I can’t say enough good things about the doctors and nurses of Toledo Children’s Hospital.  They took care of our son with skill and compassion.  They also took care of us, the family, with a sensitivity that warmed our hearts.  One nurse in particular took care of Sullivan, and she seemed to have adopted our family too.   She would bully me to sleep, or to eat, or push until I released the overwhelming feelings that I was holding back.  Then she’d hug me as I cried.  I’m sure none of that was in her job description, but she went the extra mile and we’ve always been thankful for her care.

The Ronald McDonald House Charities of Northwest Ohio provided us a place to stay that was steps from the hospital.  They claim it is the house that love built, and since our many stays with them I believe it is also the house that builds love.  I can’t go into the many ways this organization helped our family today, but look for more about them later this month.  Time spent in Toledo at the hospital with Sullivan would have been far more difficult, though, had the RMHC not been there.  We continue to be very thankful for their support.

The Defiance Area Visiting Nurses and Hospice, the Caring Way were instrumental in caring for Sullivan at home throughout his life.  They were caring people who  responded to our son’s needs and to ours with compassion and support.   This is another group that I cannot say enough good things about.  I probably would have gone mad had it not been for their willingness to talk with me when they visited to take care of Sullivan.  They were often the only contact I had with the outside world for weeks, aside from family.

Sullivan also had several therapists and state-provided case workers who took the extra time with him, and who became beloved members of our extended family.  We treasure the memories each of these people gave to us, the time they spent urging Sullivan on to do more, and the encouragement they gave  us as they worked with him.  We continue to appreciate all of the efforts they made to help Sullivan reach for his full potential.

 I know there are people I have not mentioned by name, or even directly alluded to.  If you read this, please know that I appreciate every thing you’ve done for our family through Sullivan’s life and since then.  Without our “Village” to support us, we would not have been able to survive the hardest times we’ve ever had to face.  Without all of you who made your presence known to us, we would have felt very alone.

My thanks to everyone who supported us and continues to send us encouragement.  You all make my days come alive.

This post has been written in memory of Sullivan Ira.  November 7th was his birthday.