As a parent of both special and medical needs children, Sadly, I have a profound understanding of the struggles and fears many families face. The exhaustion, extra paperwork, phone calls, appointments, diagnoses, meltdowns, and in the mist of everything, the profound love we share.

As a special and medical needs mother, I know many families with either children, spouses, or parents dealing with complex medical issues. The biggest struggle I deal with right now is learning about another friend with a loved-one who has just, or is about to receive his/her Angel wings. While I know the individual will no longer be sick, or in pain, it still hurts knowing my friend and their family will hurt with the loss.

We have been very blessed with our youngest and her slowly increasing health. However, at the same time, as her health as slowly increased, I have seen many who were not as fortunate.

When Ellie was very young we had a young couple in our church who had a very healthy baby. Shortly after birth it was clear something was not right. Soon this little one was having massive seizures, and within a few months gained angel wings. During this time, I struggled a lot because I still had my child who was not supposed to have left the NICU, yet she did. She was defying all odds.

Over the next couple years, I would see the same scenario play out several times before I could accept that she was with us still for several reasons. 1) Ellie has a specific mission to fill and only God knows what that is. 2) As parents we were doing something right with her care as medically fragile baby. 3) Her desire, fight, will, whatever you call it to discover and meet her potential was strong enough to keep fighting against her weak body.

Yes, I still get very sad, cry, and wish I could remove the pain my friends and family members feel when they have just or about to suffer a loss. I remember the pain I felt when we miscarried our 5th child. I remember the pain the day I was holding Ellie in the NICU and she crashed in my arms, or the times she crashed while admitted during other stays.

I know the stubbornness and obstinance I felt when I was told to cancel the parties we scheduled for Ellie because she would not live long enough.

Well she is now 9 and very much a fighter still and showing she is up for the continued fight.