"I don't know how you do it?"

"I don't know how you do it?" I get this a lot from other moms, co workers, friends, relatives. Which I read as... I could not do what you do. Make no mistake, I am not Super Mom, just blessed with a special child that requires the same juggling skills we all use everyday.

Usually my response is, "you would do the same." But what I want to say is "how do I not do it?" We all have busy lives, we work, we try balance work/ life, kids, school, scouts, cheerleading, soccer, baseball, family, friends, vacations, parties, holidays, birthdays, illness, death, birth, weddings, crazy families, crazy friends, more work.

Our life is the same, we just have been blessed with a child who needs a bit extra time, help and equipment to do all those things. Any mainly this just requires extra patience, planning and not knowing always how things will go.

We have the unusual circumstance in that it took 2 years, lots of doctors, tests and several hopsitals to get a diagnosis. We were also told the worst, which at the time was devastating and awful and unimaginable. However, having been told the worst not accepting it and seeking a second opinion, a full medical review at Mayo Clinic, is what has changed the way we, my husband and I view Mark Henry's challenges and diagnosis of CP.

You see without that journey hard though it was, I know we would have had an even tougher time coming to terms with his life long challenges. We are happy he has a life and although challenging embrace it. We are defiant and were compelled by the he wont do this or that or be able to do this or that - to prove them wrong! push the limits! Never give up hope! We knew our son and had a gut feeling the diagnosis originally was wrong and we pursued and pushed to uncover the truth. This also led to a new understanding of medicine.

Doctors, smart though many are, (some not so much.) Don't know everything. Sure they study a long time and see a lot of patients and think they know. But at the end of the day they don't know everything about every person or condition. They cannot predict the future as much as we sometimes would like them to. They are limited. They have not seen every condition, they may have read a paragraph on it in a textbook or heard a professor talk about it or maybe even listened to a doctor lecture about a patient with complex medical issues. But they don't know everything and they don't know my son.

No one expects to have a special needs child, no one really even knows what that means until you have one. Doctors, nurses, therapists, teachers, even close family and friends don't really "get it" even if they want to. Which is why you surround your self with the best support you can get including many of these people already mentioned which is wonderful, must have and helpful support...

But you must also find at least one other person who "gets it" it might be a mom or dad of another child with special needs doesn't even have to be the same special need. But this person or people will become your closest confidant. I have many of these now and surprisingly some I have never met- just talked to on the phone, conference call meetings with other moms, blogs, facebook groups. It really is so amazing that the thread connecting us is our kids and we all can so easily relate to the day to day challenges. From something as simple to where to buy shoes that fit over those clunky leg braces to more detailed specifics on what to expect for an upcoming surgery that others may have already been thru to just sharing or venting when you have had a challenging day either battling with the insurance company or trying to get a therapy approved or scheduled. These contacts are your life lines to remind you, you are not alone, not the only one dealing with this and it is hard and ok to ask for help or just vent!

In between doctors appointments, therapy sessions and following up on the latest pharmacy refill or special equipment order. Life happens. Kids are just kids and life is pretty normal like yours. We wake up late rush to get dogs and kids and us fed, rush to get dressed ready for school and work, planning dinners, doing laundry, grocery shopping. Fitting in something fun on the weekend and just being.

I have struggled with trying to find a balance of running around to get Mark Henry the maximum services, therapy and everything he is entitled to, but also having a balance of doing things all kids do, see a movie, ride a bike, go to the zoo, have a playdate.

It is not easy, some days are harder than others, it can get overwhelming at times but for the most part I try to remember he is my son and a little boy with a lot of love to give. He surprises us everyday which can be magical to watch and I know he has something special to share with the world. He is not CP. It's something he has to deal with and we will do our best to help him manage it.

So when people ask "How do you do it?" I would like to say, "How do you not?- WE all do it!"

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