Saturday, September 28, 2013
My husband & I were the first car in the funeral procession from the funeral home to the gravesite. The streets paving the way were lined with orange tiger lilies. It was a beautiful sight to behold. As we drove to the cemetery I was filled with emotion thinking about Jay and everything he meant to us. He was my father-in-law and a beloved member of the family. The memories rushed through my head…..
He made a point to come and spend months at a time close to us, even though he lived hundreds of miles away. Because of this commitment to being with his grandchildren, they grew to adore him. They all came running to the front door yelling “Poppa Jay!! Poppa Jay is here!” when he arrived just after dinnertime each night.
He noticed and complimented me if he liked an outfit or my hair that day.
He told me that I had a beautiful singing voice. When I scoffed, he made sure that I listened to him by repeating himself sincerely. And he laughed a lot. He had a deep chuckle that will ring in my ears for a long time to come. Thankfully, my husband inherited those fabulous qualities of being observant and very easygoing.
He complimented our family. He often told Chris & I that we are great parents, which is encouraging to hear when you are raising kids with special needs and medical problems. He told us that he loved the dynamic of our family. He loved to sit and watch us interact. He was a fan of “the process” as he called it.
He loved my cooking…especially my soups and stews. He never turned down a meal I offered him and he raved about each meal for days afterwards. I made him a fruit smoothie when he had a nosebleed that didn’t want to stop bleeding, which made it difficult for him to eat. He was so grateful for that one gesture that he thanked me often.
He lovingly referred to me as “Dr. Steffens” because I have spent the last ten years bringing my daughter back from autism. And he would sit patiently and listen to me go on and on about Marley’s interventions.
He sent me a big bouquet of flowers every year on my birthday. He always told me that he loved my birthday because it meant spring would be here soon and he appreciated the newness of the spring.
He adored my kids…his grandchildren. He read books to my oldest with autism while she hung on every word. He would play board games with my middle daughter for hours on end. He played catch with my little guy and laughed with pride as my toddler caught the ball. He was there to cheer on my daughter at her soccer games. He was there when my babies started to walk. He got to see their first steps. He filled his phone with pictures of them.
I was his confidant. I am not quite sure why he shared such personal feelings and life experiences with me, but I listened. He didn’t seem to mind that I was always bustling busy….cooking, baking, folding laundry or mopping the floor while he was talking. He just sat at my kitchen table and talked to me while I was working. I often had a baby in one arm and was stirring a pot with another arm and just listening to the experiences of his life.
He was a storyteller. And he often would tell the same story over and over again. Chris & I would glance at each other and smirk when he started to tell the same story for the umpteenth time because we knew it was just better to let him tell the story again than to interrupt. He loved telling stories about his childhood, his parents, his siblings and his college years.
Because of his outgoing nature, he had a posse wherever he went. He didn’t need to go somewhere with a friend. He made them when he was there. He was fascinated by people and learned something from every interaction. He loved to tell me about the interesting people that he met while he was at his program at Duke.
And oh, was he sentimental! He loved sappy movies. The sappier the better. He would tell you….”wait, wait….I love this line….Wasn’t that the greatest?” And oh my…he loved the movie, Moonstruck. We used to laugh because he wanted to watch the credits so he could hear the music.
There were tough times too. I’ll never, ever forget the look on his face at his niece’s funeral. He was overcome with grief, which was so out of character for him. You could tell that he felt like his heart was going to break in two. I also talked to him the day his best friend died of a sudden heart attack. He could barely get the words out.
At the end, when he was very sick, I got the beautiful privilege of telling him how much I loved him. He was most gracious telling me that I have been wonderful through all this and then he said "I love you too, kid."
He valued his family and friends far more than things. He was not a perfect person. But in my eyes, he was pretty awesome and his light will be missed.
Friday, September 6, 2013
Don’t get derailed. Don’t get angry. Don’t wallow in self-pity too long because your child needs you. Ask yourself one question…”Am I doing this based on emotion or because it will help my child?” If your actions will not help your child…you need to stop and redirect.
There will be doctors that don’t believe you. Don’t get mad. It is not your job to educate them on what you believe. All physicians are good at something. Use their strengths. Use several doctors. Use a combination of therapists, nutritionists, mainstream & biomed doctors. They all have something to offer, even if it is only the fact that you need to look elsewhere.
You will be tired and feel overwhelmed. Ask for help. People will say no (or yes and not follow through) but some will help you when you need it most. And when your child is better, you can pay it forward.
Others will judge you when your child misbehaves repeatedly. Don’t be embarrassed and don’t get angry. They simply don’t understand. Until they have walked a day in your shoes…they won’t understand. Let it go. Let it go….
There will be roadblocks. Services will be hard to come by. Do what you have to do….apply for grants, pay out of pocket, do therapy at home, read, read, read….research, research, research. Make it happen. Don’t take no for an answer but be polite. Always be polite. As they say, you catch more flies with honey.
You will have to be tough. There will be several blood draws where you have to hold your child down. But labs are the only true way to know what is happening in your child’s body…so it is non-negotiable. Treating the underlying medical problem is key. And the child needs to heal from the inside out. So put on that brave face….tell your screaming baby that it will be over soon and they will get a prize. You will want to cry. You will want to scream right along with them but you can’t. You need to be strong.
You will have to find a way to feed your child who is desperately picky. And you will have to avoid the foods that make them sick. Just finding those triggers can be difficult. It requires a lot of creativity, time and coaxing. But the payoff is huge. Keep your eye on the prize.
You will have to take risks. You will have to take leaps of faith. Sometimes it will pay off and sometimes it won’t. If it doesn’t, recognize that fact and move on. Don’t stay with a doctor or therapist out of obligation. Your only obligation is to your child’s recovery.
Lastly, people won’t believe you. They will say that you didn’t witness your child interacting and speaking words and then lose them following vaccination, or antibiotics or a virus. They will say that the vaccination did not cause your child’s seizures or GI problems. It doesn’t matter. You know better. You witnessed it. Once your child is better, they will say that your child never had autism to begin with…or…it was never actually that bad. It doesn’t matter. You will know. You will know what you have endured to get here. And your baby will be improved. Happier. Healthier.
That’s all that matters.