It is the day after the holiday, how are you doing? Do you feel like you have been through a war? Are conflicting emotions swirling for you today? Do you feel a sense of loss and wishing things were different for you and for your child? Are you exhausted? Do you wish family members and friends would give more compassion and understanding? If they are understanding, do you just wish they could help you know what to do?
How is your child? Did you see areas that may need some work? Did you notice an aversion in your child to different smells or tastes or textures? Was the noise level a little rough? Did hyperactivity increase with certain foods? How was sleeping? Did behavior hold steady or take a downward spiral? Did your child only want to chat about one topic?
When you are raising a child with challenges, out-of-the-ordinary activities can be quite challenging.
We know that you love your child. We know your heart swells with the desire to give him or her the absolute best. You desire for happy holidays and the building of good memories for this child and your family, just like every other family. You are naturally an upbeat person or work very hard to be so that you can create a good life for your family, but sometimes, it gets complicated, doesn't it?
We remember the sheer exhaustion that holidays brought to us as we were raising our children. Not only did we have the usual craziness of four different personalities and needs and illnesses and idiosyncrasies in our children who were all a little over or a little under two years apart, but our Amy needed to be tube fed every two hours. She also needed extra help getting around physically for the first five or six years of her life. We had "stuff" that had to go with us everywhere we went. Feeding tube, extra g-tube in case it fell out, enough formula (when we were doing formula -- now it is enough jars of blenderized foods), in the early days an IV pole to hold the gravity feeds. You may have extra "stuff" too. And then, we needed to be extra careful with our Joshua and all his allergies. He had "stuff" too -- like an inhaler, meds, supplements, nebulizer. We had to watch what he ate because of his many food allergies.
Your story may be different but the feelings and frustrations are similar, we are sure. You want to be the best parent ever.
We want you to know that we understand your frustration, exhaustion, and perplexity. You are not alone. You are not crazy. You have a child who has some challenges and they are not serving him or her or your family well.
There is hope, though. We cannot predict the future, but we do know there are things that you can do to calm the chaos now that will also benefit your child for the future. Our message is to NEVER GIVE UP!
Tom and Julie Meekins