I am in the middle of a great book written by Ian Brown called The Boy in the Moon. Ian is the father of a boy with a rare genetic disorder not unlike the one that Matthew has been diagnosed with. Even though I am not finished with it yet I have been able to resonate with many of the things that Ian has expressed and experienced. There is a certain kinship as I scan the pages and compare his stories of caring for his son, both good ones of victories and milestones and the not so good ones of staying up all night, cleaning poo, and not being able to communicate.
He made a reference to a system they had for storing toys, educational toys, ones from local agencies and therapists that accumulated in different rooms of their home. He recalled a moment when he peered at the label on one of the toys that had the name of an agency with an address to return it in the chance that it was no longer needed, or as he mention, when his child had progressed beyond that toy. It was a defeated moment. His child may never “get it.” We have had those moments too. Cabinets filled with hope, but no interest from Matthew. A new therapy a different doctor, a better conference, a better, more caring system…..
One could easily get overwhelmed with feelings of defeat when beaten down with sleep deprivation and having to constantly watch for harm to person, to self or property. One could get exasperated by a health care bureaucracy and systems that seem to hire people who are completely unaware that there are people on the other line of their decisions and actions. Medications, feedings every two hours, diapers, doctor appointments, therapy, did I mention sleep deprivation?
That is what it is like to have no hope. That is what it is like if you look at this journey as just having a child with a disability, a genetic mutation, a freak of nature.
“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.” Jeremiah 29:11-13
For whatever reason God has chosen us to take care of Matthew. He knows the plans he has for us. It is a perfect plan made just for us…What we need to do is pray and seek him with all of our heart. Some say that we have been gifted to take care of him…others say that we have been given more patience. I believe that we all have been gifted with the ability to care. In some people this gift is very apparent and in others…they just need something or someone to care about.
I found this interesting from an author I have quoted often in this blog…Seth Godin. It deals more in the lines of the business world but I think you find that it can be applicable to many situations:
No organization cares about you. Organizations aren’t capable of this.
Your bank, certainly, doesn’t care. Neither does your HMO or even your car dealer. It’s amazing to me that people are surprised to discover this fact.
People, on the other hand, are perfectly capable of caring. It’s part of being a human. It’s only when organizational demands and regulations get in the way that the caring fades.
If you want to build a caring organization, you need to fill it with caring people and then get out of their way. When your organization punishes people for caring, don’t be surprised when people stop caring.
When you free your employees to act like people (as opposed to cogs in a profit-maximizing efficient machine) then the caring can’t help but happen.
We have had experiences on both side of caring.
On the ugly side were told by a medical professional that Matthew would have never survived before modern medicine…it was the way nature weeded out the weak (that was uplifting). We have been told not to expect too much and not to set the bar too high…we will just be disappointed. Evil looking stares when we try to comfort Matthew when he is upset and we cannot interpret his want or need. Dirty looks when Matthew is just making “happy” noises. Whispering and giggles after we pass people…apparently finding a little boy in a wheelchair making noises funny.
On the amazing side of caring we have been hugged and supported by strangers. Doctors who have prayed with us. Doctors who have witnessed miracles. We have had people bless us with things and even money when they had no idea we were struggling. We have had people care for us by just a kind word. We have had people reach out and help us travel to a needed conference or doctors appointment. Letters, cards, uplifting comments as a result of this blog. Food dropped on our doorstep. People have reached out and given rides across the state so our kids could attend events and have some “normal” time as we have cared for Matthew in the hospital. Total strangers blessing us at Christmas time while we were out of state for a month during the Holidays for treatment. And, most of all…people who pray for us regularly and seek God with their whole heart on our behalf.
I am going to ask you the question that I need to ask myself many times when things get tough and my instinct is to not do the right thing…What side of caring are you on?
Many have asked if it is okay to share this blog about our Lessons from Matthew…not only is okay, but we emphatically ask that you would. We welcome any chance to show how good God is and how he is working through the power of prayer.