We're Gonna Be Alright...Right? Right.

I try to be positive, I’m not always successful.  I have been feeling rather shitty lately...heart broken actually.  You’d think that by now, we would be used to unexpected bumps in the road.  I actually got very comfortable with the lack of medical equipment, doctor appointments, and tests.  The education world is more fun to advocate within.  I consider myself a very capable advocate in the medical world and I feel confident that I do a good job of making educated decisions regarding Carson’s health care, the same way I do for his education, but I do not share the same passion and positive feelings in health care that I do for education.  Dreaming about educating our children to adulthood has been so uplifting; focusing on a vision for their futures has been so relieving, a great break from choices about surgeries, invasive testing, medication changes, and life sustaining efforts.

Lately, Carson has me worried again.  His seizures have changed; increasing meds seems only to contribute to decreased mobility and a lack of desire to participate in life.  His breathing patterns have changed, yet recent visits to the doctor reveled clear lungs, nose and throat.  Carson’s head circumference has decreased from the 50^th to the 40^th percentile over the past year and a half (this is down from the 90^th at birth), and he has another urinary tract infection that he is on antibiotics for.  He has an EEG, a sedated MRI, a VCUG, and a sedated DMSA renal scan scheduled, as well as an upcoming visit to see his Neurologist.  I am so happy to have everything come together so quickly, it has only been a few weeks since I began to get concerned.  I love our Pediatrician; she is always (for 8 years) so responsive to my concerns, waiting for tests and results isn’t easy...I dread it.



It is hard not to be afraid of times like these.

Last night, Blade told me that he misses “happy mommy”.  That’s a tough one to hear,  I wish I could tell you that in times of stress, I am able to keep on “acting as if until it is” but the truth is, sometimes all I can do is say ”AS IF!”  I am incredibly grateful that my little boy is brave enough to be so honest with me, as hard as it is to hear that from him, he is probably the best person to motivate me, to get off the pity pot.

This afternoon when I took Blade his lunch, I had a conversation with a beautiful woman who shared her heart with me.  She told me that I remind her of her, 13 yrs ago when she lost her little girl after 7 long months in the hospital.  Everyone around her told her she was always smiling and happy and so strong, and that is how she sees me.

This is where I choose to thank God for the messages I needed to help me find my way again.  I woke up this morning vowing to be “happy mommy”, I wasn’t sure how, but I resolved to give it a damn good effort.  When I heard that woman express her understanding of the place I’m in, and compare me to her, I was reminded that we will get through this!  This woman is so beautiful, so loving, and so generous.  There is no hint of anger or resentment and she has survived the loss of her precious little girl.  Her heart is still whole and she is still strong, she still smiles...she is still a wonderful mother to her 2 other children.

I have had a good cry, and now I am ready to pull my big girl panties up!  I will be grateful for the break we have had from this kind of worry, it allowed me to focus on school and community which has widened our circle of support considerably.  It also gave me time to have the clarity to develop a strong, new vision for Carson’s future...  

                                                           Our Vision for Carson

It is our vision to see Carson surrounded by great people with positive assumptions.  Through peer support and the use of assistive technology, Carson will participate with his classmates in many dynamic learning opportunities and age-appropriate experiences.  He will have regular opportunities to build and strengthen relationships with his peers.  He will form strong bonds, just like Meagan and Blade.  He will find his very best friend and a passion all his own.  He will feel confident and safe through the challenges that life offers.

This leg of our journey will conclude with our youngest child taking his turn to cross the stage.  I imagine he’ll walk fast, with his head a few inches before his feet…straight for the diploma and a man hug:) then, he’ll take his moment in the spotlight, with his arms out, and his head back, while friends and family hoot and holler!  With his unruly hair peeking out from his grad cap, and his gown just a little too long, he’ll reach up and throw his hat high in the air!  Then, like most Graduates, he will go party with his friends and his big brother, while we stay back, and worry about them getting home safely.

Ronan and I will always play a huge role in our children’s lives; they will keep us close and count on us.  We will instill a love of learning and they will never stop!

No amount of worry can rob me of this vision....it's out there!