ADJUSTING AND ACCEPTING

When you live with a child who has a progressive disorder, you go through phases of adjusting and accepting. We have had to do it numerous times over Jacob's six years of life. We adjusted to Jacob's first seizure to living with a child with daily seizures. We adjusted from one pneumonia to over 10 pneumonias in a year. We adjusted from having a child who rolled independently from room to room, took his walker for a ride through the kitchen, was a pro in his stander - to have seen all those skills fade away. And the list goes on.

We are again finding ourselves in the "adjusting and accepting" phase. It doesn't matter how many times you find yourself in this place, it doesn't make it any easier. Somewhere the belief that your child should improve and learn new things is strong within all of us. So to adjust to the fact that my child's bones are as thin as paper or that I have a child who is fragile as a porcelain doll is hard to accept. I am again aware of how many times I transfer Jacob throughout the day - from his bed to the floor, from the floor to his chair, from the chair to the stair lift, from the stair lift to his wheel chair, from the wheel chair to his bean bag, from the bean bag to the couch, from the couch to the car seat, and it happens over and over again. Several times a day, every day. Every single transfer has become a delicate move to make sure that every single bone of Jacob is safe. I strap our new lumbar support around his waist, I strap in his arms in the support so they can't come loose. I make sure that his wrists and fingers are not bent as I lift him from the floor. I make sure his airway is open. I then take one arm under his neck, and the other one under his knees. I carry him as carefully as you would carry an infant baby, the difference is that Jacob weighs over 50 pounds and is 120 cm tall (sorry I only keep track of his height in centimeters, an old European habit). The actual lifting is physically challenging, but the hardest part is the knowing that if I don't do it right, I can break a bone on my own child.

Jacob has a T4 wedge compression fracture. This fracture comes from Jacob simply sitting up. His bones are not strong enough to support his spine. I am constantly putting pillows of different sizes around Jacob to make sure he is as supportive as he possibly can be. Making sure that he has as little pressure on his fragile bones as possible, but at the same time, making sure Jacob has plenty of time in different upright positions throughout the day to make sure he clear his airway and lungs, and can participate in the day with us.

Osteoporosis is something that Team Jacob has to get used to. The thought that you might harm Jacob by simply being with him is scary. Very unsettling for many. I know this is the true reason for his old nursing agency conveniently ditching Jacob while he was in the hospital. No interest in any liability despite a confirmed diagnosis.

At the same time, and once again, I am once again impressed by the support Jacob continues to have around him. Jacob's nurses haven't once shyed away from our little guy, and his needs to have a full life. All his therapists have been working with us to make sure Jacob can continue with all his therapies at the same time as they are keeping him safe. We will move his occupational therapy to the warm water pool, since Jacob is "safer" in the water. Our CCB Partner Imagine is working so hard to support us in getting a handicap van for Jacob, so he safely can be in a car again. Right now, we are limiting Jacob's time in the car to an absolute minimum, since the transfer in and out of the car seat is not safe. We're also getting involved with the Rehab Clinic at Children's Hospital once again. We are going back to Jacob's old Rehab doc this week to talk about how we can keep Jacob safe throughout the day, and what support and equipment we might be able to use.

And me. I am once again adjusting and accepting. I am physically tired after a full day of transfers, but I would never shy away from getting up in the morning and doing it all over again. Adjusting and accepting is part of being Jacob's mom.

Love, Maria.