In our fifteen years with our son, we have been blessed with many wonderful and different people. I truly believe they were placed along our difficult path to make life easier, to give a lending hand, be a shoulder to cry on, and to lead the way.
If you would have told me this would be the path my husband and I would take, I would have never believed you. I probably would have dug my heels in, fought, screamed, and kicked to not go down this path. But then I would never have met the most incredible, compassionate, generous, and knowledgeable people that we have known during our time with Jackson.
They have come in all different sizes, colors, and shapes—just like presents.
Many have been unexpected. Like every teacher Jac has encountered. They love Jac for Jac. Yes, they have been trained in special education, but it takes a special person to be in a room with up to 12 children with different disabilities, dancing, singing, and making every child in that room smile.
The same goes for the classroom aides. They cry when it's our turn to graduate up to the next campus. These teachers and aides are my lifesavers because I know that without them, I couldn't do my job out in the real world, because I'd be worrying about him. They send me texts of funny sayings, cute pictures, and updates.
The school nurses that keep me sane and have an extra set of eyes on him, which also gives me peace of mind with his asthma and epilepsy. His incredible doctors, nurses, and even the office staff at our main pediatrician's office are considered family. He has literally grown up there and they know Jac's likes, his most recent dance moves, and when he is having a rough day and needs to be put in a room quickly.
The other angels are maybe the most unexpected ones. Jac’s bus drivers that were so attached to their riders that they bought Christmas gifts for each of the kids. I was so incredibly moved, because I know that those drivers have a limited income, yet these kids touched their lives.
Our Case Managers who come to do Jac's various evaluations. They watch him grow, yet also see us lag further and further behind. And they put up with a sentimental mom sobbing her eyes out. The one Case Manager I will never forget helped us get on the Medically Dependent Children’s (Medicaid Waiver) Program (MDCP). That allowed Jac to get services he needed, along with many resources to help us all. Her help is still invaluable.
There have been so many people along our journey that I wish I had kept track of them all. So many have touched our lives. There is so much negativity in the world, but maybe, just maybe, we should take a minute, look around and see all the angels among us.
You can learn more about navigating life when you have a child with a disability on this website.
We are all great at following doctor’s orders, making all the needed appointments, filling the medications, doing everything and then some for our kids. When the tables are turned, and we become the patient, things change.
Categories: Family Support
Here are some ideas for making the changes that come with the holiday season less stressful for your child.
Categories: Family Support