Thursday, August 30, 2012
Here I sit....crushed again. I feel like I live on a rollercoaster. And I hate rollercoasters. Lately, I can’t seem to shake the feeling that we are so different than most families. How our family lives our life. How we live with autism. How we live with a different diet than most out of necessity. How we live with severe food allergies. And how this affects the relationships in our lives.
School has started for my older girls and knock on wood….all is well so far. My oldest with autism is being fully mainstreamed for the first time ever, and doing wonderfully, thanks to the Brain Balance program we did last year. And before I can even celebrate her success, I get a call from the preschool where my son is enrolled and will start next week to talk about his food allergies.
I remember the day he tested positive for a peanut allergy…and a rice allergy….and a dairy allergy….and an egg allergy. He was only 7 months old. And he sat there sweetly while huge welts showed up on his back during skin prick testing. Showing allergic to foods he had only ingested via my breastmilk. Tears welled up in my eyes as the welts grew bigger and bigger because I knew this was a game changer. Peanut allergies are life threatening. And the child typically does not outgrow them.
I am no stranger to food allergies. My first-born daughter was also diagnosed with food allergies when we gave her formula for the first time and her eyes swelled almost shut and she had hives all over her body. But Xander’s symptoms were different. He was a very colicky baby and at 5 months old, a rash around his mouth showed up that looked like impetigo. But it was clearly from the solid foods I was giving him, which consisted of rice cereal mixed with breastmilk and a few purred vegetables. He also had eczema, cradle cap, nightly crying due to tummy distress, gas, and he refused tummy time.
*Notice the red cheeks, the cradle cap, the crusty wound above his lip and the red bumps on his forehead.....all symptoms of a food allergy that not even the pediatrican picked up on.
Now that I had a diagnosis, I knew how to fix his problems, and sure enough his symptoms disappeared with diet change (and MY diet change because I was nursing him.) A few months later, I had blood drawn at Duke to see his actual levels and when the results were in, it was frightening. His allergy to dairy, nuts & eggs were sky high with lower levels for rice and avocado. And a year after that, we discovered yet another allergy – wheat. Although he was eating wheat with no rash or hives…he had chronic diaper rash and he had nightly waking until we took the wheat out. Poor guy was likely in distress from the gluten.
So today is the first time….of many I am sure….when I am realizing that living with a life threatening food allergy is no cake walk. The director of Xander’s preschool called this morning to say that she got my e-mail sent to my son’s preschool teachers outlining all of Xander’s food allergies and the possible reactions. Then she asked me…”Are you sure you want to send him as a 2 year old? We will do our best to protect him, but with 10 kids and 2 teachers, we cannot have eyes on him at all times, and I fear he may eat something off the floor that he shouldn’t and then we would have a situation on our hands.”
Let me first say that I love this preschool. They are so wonderful and protective of our kids but it hit me as she was talking, that she could not protect him no matter how hard they tried. She told me that she could make the classroom peanut free, but they share a room with another class that is not peanut free. And what if something from that class ended up on the floor, in the corner where only curious toddler eyes could find it. What then?
And they could have Xander bring his own snack, not to partake in community snack time, but they would likely have to put him at a different table, by himself at snack time so he wouldn’t sneak the other child’s dairy-gluten laden goldfish.
The scenarios that she was concerned about went on and on. She finished by telling me that she is NOT telling me that he cannot come, but if it were her child, she is not sure she would send him. And I knew then, that she was right. My sweet boy could not attend preschool for at least another year…until he knew enough not to eat “forbidden food”. For his own safety. He is being excluded for his own safety.
It breaks my heart. I want him so badly to have social interaction, especially because he is so verbal and bored with me at home while his older sisters go to elementary school. But I suppose there are lessons learned. The preschool director said that from now on, when a parent mentions a food allergy, she will ask more questions, like “to what and how severe?”
And I have learned that I need to keep fighting. For advocacy, for awareness, and for healing. Yup…the fight must go on. And in the meantime, my 2 year old is stuck with his mom for the school year. I guess that’s not so bad.
Wednesday, August 22, 2012
In exactly 5 days, my 9 year old daughter will be starting 3rd grade in a fully mainstreamed setting without an aid, with only the assistance of a resource room teacher. This accomplishment has been years in the making and is proof positive that she is on the road to recovery. Unfortunately, this transition comes with great anxiety for me. I wonder how she will cope with a new setting, new teacher, new “friends”. Will the kids be good to her? Will she be disruptive? How will she adjust to days of school and nights of therapy and homework? There are so many worries.
When my mind begins to get frightened by the unknown, I find myself having vivid memories of when Marley was a baby. These were the days before an autism diagnosis, but scary days all the same. She had received a diagnosis of a Grade 4 brain bleed (the worst grade) when she was only 2 weeks old. She was born 7 weeks early. Those were the scariest days of my life. But they were also the days that were extremely enlightening for me. Until then, I lived in a state of blissful ignorance.
In my current state of anxiety, I find myself slipping back in time, to a place where a 3 month old baby cried through the night and slept in 20 minute increments and only when placed on your chest. Chris and I would take shifts staying up with our new beloved tiny baby. He took the 9pm-1am shift and I would take the 1am - 7am shift. These shifts consisted of sleeping in 30 minute increments and rocking and consoling an incredibly colicky baby (which we later discovered was due to food allergies).
Thank goodness for a glider purchased for me by my mom. We lived in that thing. During my shifts, I often found myself doing my best to console a baby with soft adult words. “Everything will be okay, Marley. I promise. I will make sure of it. You can trust me.” Then my tears would stream right alongside hers because I had no idea how I was going to keep that promise. It was a nightly routine. Singing to her, both of us crying, the feelings of helplessness and my unwavering commitment over and over to her that I would make everything okay. But I was scared. I am a do-er, but I had no idea how to “do” this. I promised her in the dead of night that I would always be there for her. No matter what. Always.
Then one night, at about 2am, I was weeping quietly as I held my crying baby close to my heart in my favorite glider when suddenly I felt a sense of calm come over me. There was nothing but a small nightlight on in the room, but I felt a presence with us. And oddly, it was as if I knew who it was. It was Chris’ much-adored grandmother who had passed years ago, when my husband was only 12. This woman is revered in my husband’s family for her sweet and generous nature and although I never met her, I feel as if I know her from the stories that are told about her. The baby I was holding is her namesake.
My crying baby settled suddenly and I felt as if I was holding my breath. My tears stopped and I was in wonder about what was actually happening. I could not see her presence but I knew where she was in the room. Somehow, I knew she was diagonally across the room from me, yet I could only feel her. Why was she here? My exhausted mind was racing. Was this actually happening? Was I hallucinating? Was I really THAT tired?
I just sat there with my awe and peace and bewilderment until suddenly, I snapped out of it and started to become scared of what was happening. My heart started to race wildly and at that very moment, my husband walked into the baby’s nursery. This was very odd, because he had no reason to come in. He should have been sleeping. The crying had stopped and he and I always took advantage of our allotted sleep time. Yet, there he was and he asked “Is everything okay?” I said, “I’m a little scared because I think your grandmother was just here.” Then, my skeptic of a husband said, “Well, there’s nothing to be afraid of because she would never hurt you.”
I realize now, that when things get scary, there are people looking out for us. Those that have passed and those that are still here. And I know they are there to help me keep the faith that everything will be okay. They will guide me and help me through the rough patches. I have since vowed to follow my instincts and watch for their signs because they are all around us.
Incidentally, a few months later, I was searching high and low for a light purple / lilac colored dress to match Marley’s for our mother-daughter baby photos. After scouring the mall and on-line for a week, I finally gave up and ordered a plain white dress on-line. And wouldn’t ya know it? It showed up in lilac color. It wasn’t even offered in lilac color, but who was I to question such a wonderful gift. And it turns out that Chris’ grandmother’s favorite color was…. drumroll, please….yup....Lilac.