In working with families that have children with complex medical problems, there is the heartbreaking truth that not all of these children will live to be adults. In fact thirty percent of children faced with pediatric cancers, congenital heart defects, and other rare or complex diseases like will not live to see their fifth birthday. This does not include the many conditions that are not a matter of if, but when.

Despite those horrific statistics and odds, there is something within each of these families that causes them to continuously pursue hope; cherishing every minute as if it was the last, and defining exactly what unconditional love truly means. Over the last five years, there are many things Ive learned from my families that have buried their child... and some of those lessons I needed to relearn as a grieving mother myself.

1. There is no correct way to grieve.

Despite turning to elicit drug abuse, alcoholism, or any other addiction that puts ones personal safety in danger, no one can tell you how to grieve. Sure there are thousands of therapists and counselors, even many more thousands of self-help books, the personal accounts and suggestions of others, and the list goes on...but the way you will end up grieving the passing of your child is entirely up to you.

2. Grieving is not something negative.

Not only is it not a negative, but it is healthy. It shows that you have loved your child is such a way that no one else could. Grief doesnt always come out all at once, in fact it usually comes out in bit by bit when certain moments, songs, smells, memories, and even just hearing their name triggers it. Its okay to take that moment to feel that pain all over again. Try to appreciate those moments.

3. Home is not a location, or even an address.

Many of you reading this your home wasnt one particular place, in fact, home was found wherever you felt the safest, the place that brings to surface the emotions youve buried, and even brings back the memories you may have forgotten. PTSD is real in parents of children with complex medical needs, but as much as the hospital setting triggers those emotions, it is also the place many call home. The memories are bittersweet, the emotions are real and very raw, but within those walls were also some of your greatest victories.

4. It will hurt to be around family and friends with living children.

Not because theyre rubbing in your face that their child is completely healthy, meeting milestone, or even being discharged after a long admission, but because your child is not here to do those things. Youll always wonder what they wouldve been like while growing up, but more so the little things will be missed even more. Survivors guilt is a real thing, especially when there are siblings to care for as well, but try to not let it rob your joy of the now.

5. In the quiet moments youll grieve even more.

Most families have said, it isnt the holidays that cause them the most heartache, it is the quiet moments when everyone else is asleep, or while just spending time alone their grieve arises more suddenly and fiercely. There will still be those special holidays and moments where the pain is unbearable, but there are also many more distractions when festivities are going on. In the silence though, your thoughts are what keep your company, the what ifs can drive you crazy, and the pain alone is nothing capable of expression to anyone else.

6. Youll appreciate the littlest of things.

From the colors in the sunset, to hearts found in nature; the way you see the world will be changed forever. The smallest of gestures will leave the biggest hand prints on your heart, youll smile more and sometimes even while crying, because you can appreciate the beauty in every day moments. You understand exactly what the phrase lifes too short means. Youll love deeper than ever before, because thats the last emotion you gave to your child.

7. Up from the ashes can come the greatest blessings.

Im not going to say everything happens for a reason, because honestly, no one wants to hear that, but on this note...I have seen the closest friendships happen, and some of the best tributes in honor of a childs life. Youll lose friends and family, because they dont know how to handle it, but you learn who your tribe really is. Ive seen families band together, mothers who have buried their own child, attending the funeral of another...because they have lived it, theyve been there...and they support each other no matter what. The family unit of medically complex children extends beyond all bloodlines and state lines. Theres an interconnected spirit through each parent, that allows them to understand each other in a way thats far greater.

These are from families directly, with some additional bits from my own experience. Please feel free to comment with your own as well. Were all in this together, from one grieving mother to another, youre not alone. Even now, I cannot express what were going through, it can only be felt...and it is such a vulnerable feeling to even attempt to share. Please, keep faith, be strong, but also have the courage to know when you need help.