A bit about bravery

"Bravery: mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty."

From the beginning of this ordeal up to now, I have been amazed by the bravery shown by my family.  

The big brother

I focused my first few blog entries on Isaiah's medical condition in order to raise awareness of KD and made little mention of his big brother, Noah.  Although, Isaiah was the one suffering from this disease, Noah's life was greatly affected.  When Isaiah was in the hospital Noah was often left with uncles and grandparents.  Mike and I would take turns at the hospital, so he was only ever with one parent at a time.  Noah is a child of habit and thrives off of routine.  Needless to say his routine was completely disrupted.  I was amazed by how well he coped with all of this change.  I am sure that he missed our family being altogether, because Mike and I certainly did, but he didn't fuss and he didn't complain.  He went with the flow as much as he could -- that is a huge accomplishment for a child that normally requires advance notice for everything.  Isaiah still requires frequent visits to the hospital and Noah is again left with relatives to be cared for, but he has been very understanding.  He also tries to aid in Isaiah's care when possible. He is the first one to remind us that it's time for Isaiah's medicine or shot when he hears the alarm on the iPad go off.  I am so proud of my Thing 1.

Takeaway: Don't underestimate your fastidious 6 year old -- he will step up to the plate when it matters most.

The survivor

All along I have been saying how brave Isaiah is and it is not an exaggeration or just something that I said, because all mothers say that when their kids face adversity.  During the time he was hospitalized I thought he was brave because he endured all the poking and prodding by various doctors and nurses. And because he was able to ingest all the medicine we were forcing into his mouth. (At one point I think he was chewing up to 6 baby aspirins at a time.) And because he hardly complained after sitting in that hospital bed for almost two weeks.

But his real bravery shined through when he went for his six week follow up.  He lay so still for the echocardiogram that the sonographer was amazed and asked if he was always like that.  When he went to get blood taken, amidst the sounds of screaming children, he was so cooperative that the nurse asked the same thing.  He didn't even flinch or make a peep when she inserted the needle.  That's better than most adults I know.  

When we started administering the enoxaparin by injection  he astounded me once again.  He would come over dutifully and lay down.  The first few days he lay very still and didn't move even when the needle was inserted.  When we started injecting in his arms as well, he became a bit more resistant.  I suppose it must hurt more, as there is less fat in that area.  He still comes to receive his shot without complaint when he knows it is time, but he has started to move around and try to push the needle away.  I think he is just fed up with all the pokes.  Who can blame him?

Prior to the cardiac cath he had a bunch of tests and appointments to attend all in one day.  Echo. ECG.  Chest x-ray.  Blood test.  Appointment with the nurse.  Appointment with the cardiologist.  Appointment with another nurse and another cardiologist.  Through it all he cooperated and waited as patiently as a 3 year old can.  The day of the procedure I lay him down in the procedure room and he didn't even try to cling onto me., despite being surrounded by unknown masked people, bright lights and strange looking machines.  He just lay still on the table as the anesthesiologist placed the mask on his face.  No struggling, just lay calmly until he fell asleep.  Again, amazement on my part.  

Takeaway: Your three year old is probably braver than you are.

The strong dad

People who know me well know that I am a pretty emotional person.  I take things to heart and can get teary-eyed quite easily.  Mike on the other hand is very even keel and logical about things.  Given this, it was bizarre that during Isaiah's hospitalization that the roles were reversed.  Mike was much more emotional and distraught.  Whereas, I was surprisingly calm.  I am not sure if I was in denial, but I just knew that Isaiah was going to get better and go home.

Despite the emotional and mental stress from this horrible thing that was happening to our son, Mike was still a pillar of strength.  He was the advocate for Isaiah in the hospital.  He was the one making sure Isaiah received his medication on time.  He was the one asking the doctors all the tough questions.  He was the one pushing for adequate answers to those questions.  He was the one ensuring that we knew the "if/then plan."  He was the one making sure the doctors and nurses were doing everything in their power to make our little boy well again.  He was Isaiah's voice at the hospital, because Isaiah could not speak for himself.  We received wonderful care at SickKids and know that we were in the best possible place for treating Isaiah.  However, due to some of the ways hospitals operate and our health care system is run, there were also many moments of frustration.  (I am trying to get Mike to be a guest blogger so he can share his many thoughts on this -- stay tuned.)  I am thankful that Mike was strong enough to speak up and make sure Isaiah was receiving the best possible care.  He helped to cure our little guy.

Takeaway: Don't be afraid to speak up when it comes to your child's health.  You are your child's best advocate.  

My boys

Recently, I have had quite a few people comment on the strength I have shown through this ordeal and it surprised me, because quite honestly I never thought of it that way.  I feel that I am just doing what any mother would do in my situation: whatever it takes to keep your family happy, healthy and strong.

I would like to share with you an excerpt from a card I received in the mail from the mother of one of my oldest and dearest friends:

"Andrea tells me that Isaiah is a wonderful little guy with a great spirit.  This must be a source of strength to you."

She is absolutely right.  Much of the "strength" that I have shown throughout this experience I have drawn from Isaiah and his fighting spirit.  He is truly my hero.