All about the Neuro visit

How to manage the fear? We’re going forward in our quest for a diagnosis for our Apple Doodle girl. She has the sweetest smile and the most infectious giggle and exuberant laugh. She’s been getting physical therapy since she was 3 months old. Since then we have added occupational and speech therapies. This week we went back to neurology. I think she was under 6 months old the last time we went there. I expected that he’d order an MRI. I did not expect him to say, “Yup, definitely have some motor apraxia going on.” You know, but you don’t REALLY know. Except now we do know, sort of. Now we need an MRI. For the next couple weeks I’m going to be scared sh&tless.

After he said “apraxia” I stopped understanding the neuro. Suddenly he sounded remarkably like Charlie Brown’s teacher. Some scary words were spoken: brain damage, apraxia, muscles working fine (wouldn’t we need a EMG for that?), brain function, lots of other “brain” something. As he’s grabbing his bag to go to another patient he asks: “Any questions for me?” Unfortunately we have to wait until after the MRI to get definitive answers. I’m picking up our coats and I’m wondering how I’m going to call my husband at work and tell him the news gently. Gently?!!

Manage the fear. Keep it contained. Keep it in the back of my mind and keep going. Fight back that fear. I have to stay strong for my babies and for my husband. Blink away the tears, take a deep breath, regroup, BREATHE for the love of God, and focus on the important things.

The road to a diagnosis is painful and it is just the beginning of the journey for my baby girl. This is not what we had planned for our babies. It is so very sad. The tears that flooded my eyes in front of the elevator were for my babies, not so much for me. The tears in my husband’s eyes weren’t for our sadness. They’re for all his fears for our babies. Take it one day at a time and never lose hope. It is all we can do, the life of a special needs parent.

Fairness & Forgiveness

Forgiveness and fairness are funny things. Everyone wants to talk about the unfairness of it all, whining about how unfair life is, blah, blah, blah. But no one wants to forgive anything or forget the lessons learned. Because if we forgive, does that make us the fool? No one wants to trust and be that fool again.

Yesterday I had to take my daughter to the neurologist at CHOP. You see a lot of sick, and I mean really sick, kids on the elevators. Passing a full lobby of bald babies is sobering. You know what I realized? If you don’t forgive and move on, you’ll be stuck with that bad energy and it is toxic. I don’t want to be defined by the mistakes of others and the hurt they caused. I don’t want to be that bitter person who says they’re stronger for learning their lessons when in fact they’re being defined and shaped by others wrong doing & the past. Those types of people never seem very happy to me. If I die tomorrow, I want to die happy, surrounded by love and happiness. I don’t want to die longing for someone I once knew.

I am me, I am loyal, I am fiercely protective of those I love & I’m not afraid to speak my mind. I try to be fair to everyone, I laugh at inappropriate times during movies, I fall asleep reading a lot and sometimes I screw up. It is hard for me to trust again after I have been deeply hurt and its equally hard for me to apologize when I screw up. But above it all, I am honest. I don’t like liars.  If people don’t like my honesty, well that’s on them. I don’t play games. Ever. When people start lying and playing games, I usually decide that’s about the time I stop trying to keep them in my life. I don’t want that around my kids, they have enough challenges to face without adding somebody else’s craziness to it.