Monday, July 25, 2011

we all sing the same song

sleepless nights have become the norm around here for me. tossing and turning. thoughts  and worry keep waking me up every hour. until finally, out of exhaustion i do fall asleep and then i hear “moooom! come in here!” from the next room. so up i get and start the day with two boys full of energy.

the reason for all this worry: ozzie. he is now 23 months old. i originally wrote about his delays with walking here and here. but really, i haven’t gone into much detail. last thursday afternoon we had an appointment with a pediatrician. we were originally referred to a developmental pediatrician, which we just learned our appointment won’t be until sometime in april....2012. and that’s if we’re lucky. ozzie has yet to have an appointment booked, he is just IN the system.... um ya. please don’t even get me started on that one. 

at the pediatrician’s we described all the little nuances ozzie has. his abnormal gait. his right arm and how he doesn’t use it as much. we mentioned what he’s been doing in physio and occupational therapy. the doctor gave him a once-over, watched how he walked and interacted with his father and i. we asked him for his opinion of why ozzie's physical development and movements are unusual.  he said that it is not his area of specialty but he feels that basically it is the communication between his brain and his motor skills that is not functioning as it should. likely the result of an event and it is non-progressive.

brendan responded with, “you’re describing cerebral palsy to a tee.”

the doctor said that he doesn't like that label because it is too all-encompassing. it is such a broad term and the degrees vary from person to person. but the bottom line is that yes, what he has is a form of cerebral palsy. and it isn't really a disease but more a fact of life for ozzie. he will have to develop around these limitations, they won't get worse and his body may find ways to "rewire" around the problems.

the pediatrician is scheduling an MRI to look at ozzie’s brain and he is also referring him to a pediatric orthopedic specialist to check out his hips and feet. if he needs orthotics to help with his walking, we’ll be going in the right direction.
the doctor said that ozzie has nothing wrong mentally, seems very intelligent and has a great personality. i say he’s a fully functional boy with a few limitations.

upon hearing the diagnosis:
heavy heart.
sadness. frustration. anger.
more anger.
more sadness. not for me as a parent with a child with cp, but FOR my child. for his future. kids can be very cruel. i see his budding personality is one of much strength and independence. he is so so funny and entertaining. always mimicking his older brother. we can only hope to foster ozzie’s mind with hopes and dreams and that the impossible IS possible; like i would for any child of mine. to strengthen his heart and self-esteem when he’s down; like i would for any child of mind. i know ozzie will perservere he’ll be strong. he’ll be passionate. he’ll be loving. he’ll be creative. he’ll be smart. i know this, because he already is.

we have a big support system. family and friends alike. two very caring and concerned physio & occupational therapists. more doctors will be involved as he grows, i’m sure. and we’re heading in the right direction therapy-wise. i’m not struggling with this part of it all. this will become our new routine. doctor’s appointments and therapy sessions. what i am struggling with is the why. the how. the when. because ultimately we will probably never know. i'm sure this will stay with me forever. a small chip of guilt on my shoulder that no one will ever be able to rid me of. this part is hard. and will remain that way.

but so will the immense love for my little boy. 


video credit: sesame street.

12 comments:

  1. Tears. For you and your family. And hope and strength and love and light.

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  2. This is such sad news to hear. I know that Ozzie will be strong and grow up to be an amazing person.

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  3. Hugs, Erin. Our heart broke a little when we heard the news but like you know yourself, Ozzie is AWESOME. If every kid had the love, support, encouragement and FUN you pour into your kids, your relationship and your friendships (and familyships), they'd be soaring. M+O are lucky boys.

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  4. You and your family are in my prayers. His body may not be, but Ozzie's heart and spirit are PERFECT.

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  5. sending you so much love and support. you are are such a role model for me, for the kind of mom i want to be.
    love you xo xo
    hugs to you and Brendan and big kisses to my darling nephews.

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  6. so many prayers and love and thoughts of peace and healing. you are amazing, ozzie is amazing, and his fighting spirit is going to rock the world. xoxo

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  7. In social work development theory we talk about 'goodness of fit.' That's the idea that the family a baby is born into has the strength and capacity to nurture that baby's unique collection of strength and needs. You and Brendan and Miles, along with the many family members and close friends that I know couldn't be a better group to nurture a child with a special gift or challenge. You can all find humour where so many others can't (and, uh, sometimes shouldn't ;P ) You relish in the absurd. You're charmed and inspired by the unique and especially by the uniquely gifted; mostly because many of your friends and family are uniquely and very often unconventionally gifted. I can speak for Brendan's friends and we often got dealt the bitter end of the judgement stick, but learned early how to overcome on our own and to devein our allies from the masses around us- that's how we found one another. Ozzie will be a fine padawan to their Jedi social mastery :)

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  8. Erin I thought about you guys when I went to bed and when I woke up. When Mark and I talked about it we both agreed that Ozzie's personality and beauty will always garner him fans and the "immense love" you talked about. My Mom who is a physio works with a very nice Dr. with CP and she said that you can barely even notice his cute walk :) If you need anything let us know. We love you guys xo

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  9. As a parent I feel your hearts, but can't imagine the frustrations you guys are going through. When we first heard of Ozzie's delayed walking we were at Noah's birthday party. When we saw you guys again at Mark & Danielle's party a huge difference was seen, and Ozzie's smiles is what was most powering. Since CP can't get worse, it can only go the other way and has in such a short time. Ozzie is blessed to have a strong support system. This will definitely help with whatever challenges Ozzie and your family may face.

    Big hugs and kisses from my family to yours :)

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  10. i (we) love you guys so much. we are blessed to have you as our family. i am the one learning from you and brendan. keep up the great attitude :) miles and ozzie will always be the best in our eyes. much love, support, hugs and kisses. ~holly

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  11. Hey - as someone who used to specialize in working with children who present with gross & fine motor delays, hit me up at any time for activities or ideas to help him get on with his bad self! Or! If you just want to bitch about the system together. Sending love & support.

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  12. Oh my, mama. What a thing to hear. It sure is going to be complicated, all of you growing up together with cp, but you're going to love each other like crazy, too. You're going to get through everything with a bond and a love and a sense of accomplishment so big it will block out the sky. My sincerest, most enormous and best wishes for you and your wonderful family.

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