A parents internal vision for their children lies deep within them. They cradle this vision, keep it safe, keep it thriving, keep it “normal”…
We all have dreams for our children to grow up, be independent, successful and have purpose with passion. In fact as our little ones grow in our belly’s we are already planning out their life’s. He’s going to be a football player, have tons of friends, go off to college, get married and have kids. Ask yourself, didn’t you do that? Most of us parents have. I am guilty of doing the same with my first born. This reminds me of the story I was introduced to when he was first diagnosed with Cerebral Palsy at 10 months old. I was in a workshop with Parent to Parent and the speaker could see the fear, hopelessness, struggle and lost feeling in my face. There was no hiding it. She handed me this piece of paper, hugged me and smiled deeply as if talking to me without words. As soon as she was out of sight I turned the paper over and there…Welcome to Holland by Emily Perl Kingsley. It was exactly what I needed at that very moment. As I read I walked with tears pouring out of my eyes. I couldn’t stop reading it, over and over again. It spoke to me with intense emotion with that vision I had changing right in front of me. For years after that first diagnosis I lived in a world of not myself. I had a wall up. I never let others in. I started having full panic attacks. I was crumbling, living in survival mode.
I say all this because I feel I’m having that same crumbling moment now. I have grown so much in these 8 years with Linden. I can handle things a little bit calmer however this one was a stab straight through the heart. A pain that I don’t foresee giving me any relief soon. You see we were all set up to go to Italy but instead landed in Holland. We love Holland! It’s not been easy to say the least but Holland is exactly where we are supposed to be. I as a mother, teacher, person that has come full circle to be in love with my life. I’m Linden’s biggest advocate. I’m his voice when he can’t find his. I’m his teacher helping him grow and thrive. I’m his mother…I’m the lucky one!
Diagnoses: Let’s recap over the 8 years what he as been diagnosed with, shall we? Join me on this journey of remembering the pain that came with each new one…
MRI discovered Stroke in Utero-10 months old
Hypotonia-diagnosed 10 months old
Ataxia-10 months old
Esotropia-10 months old
Cerebral Palsy-16 months old
Speech Delay-2 years old
Factor V Leiden Blood Clot Disorder-3 years old
ADHD/Anxiety-5 years old
As if these weren’t enough we were in for it with Linden’s up coming psychiatrist appointment. You see for the last 3 years we have been in a never ending battle of uncontrollable behavior, rage if you will. We have been trying to mange it with medication but it seemed ever few months (sometimes weeks) the medication had been outgrown and we were back in the middle of these meltdowns…severe meltdowns. Linden struggles with managing his emotions and recognizing them. With that, once he hits the “lost” point there is no recovery except time…sometimes 6 hours with a hospital stay. We’ve been bitten, hit, kicked, things thrown at us; leaving us with blood and bruises. Our hurt for our little boy was immense. We have been playing the medication game for 3 years, THREE YEARS! We were done! DONE! I have called and applied for any and all services but with always a denial response. You will never understand true defeat until you’re on your knees crying over your little boy, who for a moment has found a second to breath and rock himself, begging for his relief and help all the while knowing you have exhausted ever bit of research, non-profits and foundations leaving you empty and broke.
We discussed all sorts of causes; Oppositional Defiant Disorder, Bipolar, and Autism. With help from Linden’s doctor she was able to get us in to see a highly regarded psychiatrist here in Austin. Upon arrival they informed me that they had received all paperwork I had filled out prior to arriving and will be using it to see if their results align. We are escorted to our room. It was eerie to say the least. On one wall had a two way mirror which thankful Linden had no clue. There were very few kid items out and a hidden baby monitor on the counter. We sat there for about 20 minutes waiting for the doctors knowing they were watching and listening to everything. The door opens and three women enter one by one introducing themselves; psychiatrist, psychologist and nurse practitioner. We were all a little overwhelmed. Linden was timid at first but after 10 minutes he came around and worked with them.
So many questions…so much information…2 hours later we were sitting there in front of the doctors anticipating an Autism diagnosis.
Intellectual disability…………………sensory integration disorder………………….
We knew this was going to come but we didn’t know when and we certainly didn’t think it was that day. We were in shock and our minds racing. These doctors were awesome how they told us. They were kind and understanding. They made sure to include positives about him. They had great advice with warm voices. I felt safe and scared at the same time. For goodness sakes! We loved Holland! Now we’ve landed in a whole new place that I know nothing about. This isn’t just Cerebral Palsy anymore, it’s bigger!
When we left William was speechless and unable to get thoughts out. He was in such pain as I watched him from the passenger seat. I wish I could help him. I knew that pain all too well because that was me 8 years ago. It’s not a safe place. That ride home was quiet and somber. My mind racing on all my new to-do’s and research. Contact our social worker, get his doctor to call in blood work, change in current medications, create picture communication cards for routines, fill out the medicaid buy-in application, contact current neurologist for bathroom help, schedule a new appointment with a specialist in Cerebral Palsy, get an ARD scheduled before school starts, contact after school care and work out a plan for him, and get in touch with my local MHMR. Just the thought of what we have in store is exhausting.
So we at first thought Italy but then landed in Holland. We love Holland for these last 8 years but now our plane has landed in a totally different place. It too we will love. Our journey is far from over and while this diagnosis is the worst any parent wants to hear, I did find peace. The peace I needed to understand what was really going on with my baby. My husband and I are fighters. We have been for the last 8 years and we’re not giving up now.
“We are the champions, my friends
And we’ll keep on fighting ’til the end
We are the champions
We are the champions
No time for losers
‘Cause we are the champions of the world”