Three of my children have severe physical special needs.
Two of them have had cerebral palsy since birth and one of them has suffered a traumatic brain injury. Two of them use a wheelchair and one uses crutches to get around. All three of them have global developmental delays.
But, what is it really like - on a day to day basis - to have children with big complex medical needs?
I'm not going to lie, its hard work.
But you will see in the list below, that with each difficulty there is a positivity.
1. It's messy, and smelly, and scary...
There are diapers. Big kids in diapers.
Never in my life did I ever think I could handle this part of it. I actually have a very weak stomach and very strong sense of smell.
In the past, I marveled at how medical professionals could handle this and put in the category of "Well I could never..."
But just like with your own infants, you wrinkle your nose and deal with it and then, all of a sudden, its no big deal anymore.
It's not just smelly, some things can be scary.
Things like feeding tubes, seizures, and surgery. There is a lot of research involved. There is a lot of tough decisions.
We have to depend on God. It all strengthens our faith.
God gives us the wisdom, and the strength, and a stronger stomach (lol) to persevere.
2. It's hard physical work.
There is a lot of heavy lifting involved. When we first adopted Kavasi, he was barely the size of 12 month old. One of the case workers said, " You know he's going to get bigger, you sure you can handle that?" . Well, he's 11 now and we have hurt our bodies.
On the plus side, it encourages us to keep our bodies strong and healthy. These kids depend on us so our own health and well being becomes a priority.
3. You give up time and privacy.
I will never forget the first time we took Kavasi to our regular pediatrician's office and the nurse said, "You're in a whole new world now".
She was absolutely right.
This is a world of physical therapists, occupational therapists, neurologists, orthopedic surgeons, 3 month follow ups, durable medical equipment suppliers... the list is never ending and overwhelming.
There are also in-home nurses, in-home aids, in-home therapists... you get the picture.
I love having this extra help in my home, but it means having more people in our personal space.
On the flip side, we are so happy that all this help is available to us. The appointments may be a juggling act at times but we are so lucky to live in a country where we can get this kind of healthcare and we know there are others in the world who can not.
4. People don't like you.
I have to admit, I am the kind of person who doesn't like it when other people don't like me.
And I don't like conflict either.
I've never been the "I don't give a darn what other people say" - kind of person. Although I do admire those types of people. Quoting the singer Jewel, I'm sensitive and I'd like to stay that way".
While some have called us angels. Many more have called us crazy.
Including some very outspoken relatives who tried to dissuade us every step of the way.
There have been in-home help that we have had to let go (fire).
There have been doctors that we have had to stop seeing (cancel).
There have been teachers that can't stand us (still are I'm sure).
There have been neighbors that talk behind our backs (in a small town, it always gets back to us).
It's been humbling and I am reminded that Jesus says :
“Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me."
In other words, if people don't like me because I am doing God's work:
I am blessed.
5. And finally: Are our other children suffering because of the intense needs of our medically fragile children?
We have to work hard to be mindful of our other children. We don't want their whole lives to be defined by being the sibling of a child with a disability.
We don't want their lives to be an afterthought.
This is a constant pressure and stress on us as parents.
The benefits of having a sibling with special needs outweighs the costs.
My other kids have a perspective on life that cannot be taught at school.
They are growing up in a home with a kind of diversity and level of acceptance that many people on our culture will never know.
The privilege of being able to walk, run, move freely is not lost on them.
Their level of compassion is off the charts, and THAT makes me the proudest mom I could ever be.
People have called us angels for taking them in, but the truth is they are a blessing to us.
I once read a story about Mother Theresa (Yes, she is a hero of mine. No, I am nowhere near her level of awesome).
When she was running an orphanage in India, she placed a severely disabled child with an Indian family. After a little while, she felt that she had asked too much of them.
I guess she thought the needs of that child would overwhelm the family, so she returned bring the child back to the orphanage.
The family begged her not to take the child. They said, "He is what makes us special. Without him, we are nothing. "
Jesus says:
If you love those who love you, what reward will you get? Are not even the tax collectors doing that? And if you greet only your own people, what are you doing more than others? Do not even pagans do that?
Be perfect, therefore, as your heavenly Father is perfect.
These verses are usually used in the context of 'loving your enemy'. But notice here he says 'your own people'. That is, not our own family....
He's talking about hanai!
Hanai is a commonly used word in Hawaii referring to adopting or fostering. It could mean, legally adopting, fostering for the state, or even just welcoming another into your home informally.
Or, just welcoming another into your life.
Loving one another.
Loving your neighbor as yourself.
Hanai is all of this!
Now do not get me wrong - we are far, far from perfect.
But in taking on this hard work, we are striving to be more like our Heavenly Father every day.
Although the special needs lifestyle can be difficult at times, it's what makes us special- as a family.
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