Patient Advocating

Nick and I have a huge desire to create a pamphlet for hospitals to give to parents who have children with high risk conditions and complex situations.

That's because, when we walked into the role of these parents of a very high risk medically complex child- we didn't know who to turn to or how to turn. We had thought all along that our advocates would be our doctors, but it turned out that WE were our main advocates. Over time, we found that there were other advocates available too, other options and many avenues to pursue... But when you are in a critical life and death situation, it's hard to research those avenues- nevertheless find someone to help you proceed in the direction that you want to go.

Our pamphlet wouldn't have to be completely chalked full of our own experiences, because that's not what we want. We are very aware that there are many MANY options to choose from when it comes to caring for a complex child... Compassionate care being one, and surgical intervention often being another- but there are so many choices thrown at you in such a little time and unless you build yourself a backbone instantly- you don't know that it's within your rights to speak up LOUDLY on behalf of your little one.

Compassionate Care doesn't mean giving up on your child- which was hard for us at first to realize. It's a choice that families seriously need to consider when it comes to prolonging the life of their child or allowing them to be at peace.

Compassionate Care means one of two things.

1. Taking your child home and making them as comfortable as you can while you spend as much time with them before their condition deteriorates and they pass away.

2. Taking them home might not be an option, so making them as comfortable as you can in the hospital while also allowing them to spend their last moments in the way that you as the parent want to see them spent.

It is not giving up, it's choosing quality time over quantity. It's definitely not a wrong decision when your child is born with a complex medical condition. There is no right or wrong here. Some parents do not want to put their child through surgeries and possible pain knowing that they have low odds of survival or poor quality of life.

I do not advocate strongly for this position, but at the same time, I completely understand the choice. There were times I had wished that we had chosen this in the beginning, watching Gabe be intubated and remain very ill and knowing I couldn't take him home and just love on him while we had him was very hard. He could have not survived his first surgery, and I would have wished we hadn't put him through it at all if we would have lost him. So in complete understanding of that position, I have no judgement towards parents who choose it.

The second route can be the most challenging and most draining choice, but it's in the hope and belief that fighting for your child's life is important to your family, despite what the odds or percentages say.

This is the route we obviously took for Gabe.

It comes with a lot of push back, especially if your child has Down Syndrome (in hospitals where they do not understand the quality of life for a child with Down Syndrome, especially  where there will be more resistance for treatment) or other chromosomal conditions.

The first thing you should know when choosing this route is that there is no point where it is not okay to change your mind. If you decide that your child has been through enough, that your family cannot endure more surgeries or more traveling- it is okay for you to choose compassionate care at any time. That is something you must know. It does not make you a bad parent to choose that for your child, and it can become an option at any point that your child is not doing well and the road does not look promising.

The second thing you should know is that there are people who will listen and advocate for you. Many major hospitals now have incorporated teams called PACT teams. Patient Advocate Care Teams. These people will not judge you. What they do (and often times there is a hospital pastor of some sort on the team) is get together with you and your family and get to know you- they get to know your child and they find out the wants/needs/hopes you have for your child. Then, at any time, you can call them into a conference with your doctor.

The PACT team will take notes of what the doctors say and they will ask questions on your behalf that you yourself may have forgotten to ask. They advocate from your perspective and they help unite yourself and your child's care team's thoughts. You can have these conferences as often as you need them.

PACT was INVALUABLE to us both in Seattle and in Boston. We didn't call on them in Boston until towards the end of our stay, but they helped Nick make the choices that he needed to make when it was apparent that Gabe was not going to get better. They do not push their beliefs on you, which is very important, but they will honestly fight with you for what you believe is best for your child.

PACT will help you talk to your doctors and push when your doctors don't seem to be understanding you and your child's needs. Every time we worked with PACT, we found ourselves more at ease with the care of our child and more understood with how we wanted him cared for.

I cannot stress enough, if PACT is available, ask for a meeting with them. Get to know them, and utilize them at every chance you can.

If PACT is not available, there are also social workers. It sounds scary the first time you hear the social worker wants to speak with you, but almost all of the time, they want to talk to you about your family and how you are doing. They will work with your insurance to help you find housing, they can help out with food expenses at times, and they often times will drop by a bag of snacks or goodies. They can help you get on state assistance programs, find housing (shared, even) and even help with transportation needs.


She could be my daughter...

It's amazing how God works on our hearts throughout our lives. Somewhat mysteriously, at times. You know the times I'm talking about- where you are holding on but waiting for something (anything) to make sense.

Nick started a job at a care facility as a CNA recently. He comes home and talks to me about all his residents and the funny things they say and the scary things that happen- and some of their stories... And I am subdued by each of them- like I know them personally after a week of these stories- so much so that I cry for them and I ache for their families.

We've seen a lot of this kind of care with our family recently, people getting older and families having no choice but to put them in full time care because they can no longer care for them alone. It's the most difficult part of life, almost so that I told Nick I don't ever want to go through it and I hope lethal injection is available by then. It's so hard on families to do it, and so hard on the people in the care.

One of the residents is a woman, about 30 years old. She is severely disabled, blind and cannot communicate. Her story will make you cringe, as it could happen to anyone.

She was left in her bathtub alone around three years old for too long. Who knows how long too long was, long enough for her to suffocate and have severe brain damage. She had no issues up until that day when her life and her families life was drastically altered forever.

Now, she cries most of the time- except when her family comes to see her. On that day, they brush her hair, they braid it, they talk to her, they make sure she is clean... and she knows she is loved on that day. She doesn't cry that day. Her family doesn't know this- that every day they don't come is full of her tears.

A girl who cannot communicate can communicate in the language that we all speak. Love.

On that day, she feels loved.

"That could be our daughter." I told Nick, tears in my eyes. "That could be anyone's daughter- in the blink of an eye."

Then, I pictured in my head a woman we met in Boston with a disabled child who she cared for at home- she said he didn't communicate but that she knew that he knew they were there. He knew he was loved. She kept him at home and had home care come for 10 hours a day to let them attend to their other child and other activities. They took him bike riding, they took him to the park and let him go through the fountains, and though he couldn't say it, they knew when he had a good day and when he had a bad day.

As I've reflected on that moment with Nick- that moment where that woman was my daughter- I realized how important God's love is in our lives. How important loving each other is.

We communicate love. Those words you say every day, mean nothing, if you aren't taking the time to communicate love in a tangible way to those around you. Nothing can thrive, no one can thrive, deprived of love.

This has been hard for me recently. Living a life focused around survival and feeling that my purpose was to my son's and no one else left my love language and my marriage both oddly worn down.

My love language, once so much more developed, has taken a beating over the years- and my heart has accepted that I cannot love everyone as much as I wish I could. I push and push with words and they get me no where unless I commit to loving someone where they are at.

Today, your love towards someone around them is going to make an impact on them that will not be visible to you. Accept that, and love them anyway. Make an effort to prove to someone that they are valuable and worthy of tremendous amounts of love. And if they don't respond, if you don't see it, it's not a failure.

The failure is when we stop trying to love- and we don't see the impact that has on those around us.

The people who go home without receiving or communicating love are like this girl on the days her family isn't there. She can't say love, she can't know why it is she feels so deprived of it... But without love, hope can't grow. Destiny can't be fulfilled. Promise can't be understood. Healing can't begin.


Down Syndrome

There's a lot out there on the internet regarding Down Syndrome.

A lot of it is Mothers or Fathers who have children with Down Syndrome describing their fears and the loss of their dreams and how their lives have changed in a positive manner because of their unexpected blessings in a unique new life.

Some of them are people making fun of Down Syndrome and "Retarded" Children and laughing at how their intelligence compares to their own (a sad ego boost for people who need to justify their own self worth by putting others down)...

And then some of them are people who are trying to justify their choice to terminate their pregnancy because of a Down Syndrome diagnosis.

All of them share the same context, Down Syndrome starts out as a scary mystery.

At first it's mortifying, to realize how little you know about Down Syndrome when it is such a common occurance among young and old and rich and poor.

Somewhere along the road of fears and confusion, playing the blame game (or having people in your family play the blame game... "Well there's nothing like that in OUR family.") happens. Stop that.

For those of you who are dealing with that... Down Syndrome, 98 percent of the time, has NOTHING to do with inheritance or family history. It just happens. No one knows exactly why, though lots of people tend to guess, but it just happens. It has no pattern, it happens the same among the poor and rich and young and old.

And it's one of those mysterious things that you don't need justify or blame.

I try to be sympathetic to those who go into the depths of despair, because I myself have been known to go there from time to time- but it's important to realize that a diagnosis of Down Syndrome does not change who your child is.

Your child will still look like you and your spouse. Your child will still have a personality all of their own. Your child will also have traits related to their Down Syndrome diagnosis.

Some of these traits are breathtaking. Like the brush-fields spots in the eyes- speckles of white stars throughout the eye color turning the eyes into a star system all their own. Toes that are perfect peas in a row.

Some of them are just funny. Shorter arms that make it harder to grab toys at first... (Gabe couldn't reach his hands to the top of his head when he was newborn... But got there over time.

Your child is a miracle.

70 percent of pregnancies with Trisomy 21 abort themselves in utero. Your baby had a thirty percent chance of surviving to birth, and they did it!

50 percent of babies have heart issues, usually an issue known as an AV Canal Defect- but sometimes as simple as a hole in the heart that goes away on its own, and sometimes more complex.

30 percent of children with Trisomy 21 will develop Leukemia.

Staring at these odds, looking at your little one who has beat them (or is surviving despite illnesses related to Trisomy 21...

You are lucky you ever met them.

I was lucky I ever met my son, Gabe.

Mr. 1 percent chance of survival past his first operation... Well, take that statistics!

You can't have a rainbow without a little rain.

So this is for you people out there holding miracles or waiting on them.

Check out "Trip to Holland" and be thankful for your chance to meet your little one tonight.

I know I am.

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