I was recently exchanging emails with a friend of mine recounting some of the circumstances that our family dealt with in 2008. Among the miscarriages and seizures we decided to throw in a job change and put our house on the market. It ended up being the most stressful year of our lives. I remember one day in particular when I received the Sunday School prayer list and I realized all three of us were listed on it.
I recognize that I'm not the most um.. expressive person in our family. I will often share the facts about what's going on, but let Chris share how it is affecting our family. The last couple of weeks with Christmas break and the “foot break” have given me some time to reflect on life. My time of reflection providentially coincided with some reading and conversations to produce a few thoughts that I feel compelled to share.
The first thing I would like to confess is a fear. I know many of you are reaching for 1 John 4:18 but bear with me for a second. Its a fear of ambulances and fire trucks. Once you have seen your child carried away in an ambulance, you will never look at an emergency vehicle the same way again. After the first ambulance trip I began to say a prayer for the occupants every time I saw one. Now after four trips, they have a visceral impact on me. The first thing I think is “Is it headed for my house?” Our fire district does a “Santa Run” on Christmas Eve where they drive the fire engine around with Santa on top and throw out candy to the children. When they came by this Christmas Eve we were the only ones that came outside on our street so they stopped to wave. I'm sure they were just being nice since we are “repeat customers” but seeing that truck stopped in front of our house with all the lights going just caused me to lose it. All the emotions of the past seizures came flooding back and I had to go inside to regain my composure.
My second confession is not a fear per se, but rather a place I cannot let my thoughts take me, and that is Joshua's future. A year ago it was so easy to dream about doing manly stuff with Joshua like scouting, camping, hiking, rock climbing, etc. Now my dream is to go a day without being hit, kicked, or having a cup of juice thrown at me. All those perfect, happy dreams have been put on hold indefinitely.
Perhaps the most strenuous and difficult part about raising Joshua is that there is no way to take a break or get away for awhile. Chris and I really do appreciate all the many offers from people to help keep Joshua for a few hours. Unfortunately its really not possible at this point. Let me explain. Firstly, he is incredibly strong and can become incredibly violent. Yesterday he pushed Chris over and down to the floor. I have had dining room chairs and toy boxes thrown at me. Actually the larger items are not really a problem because you can get out of the way, but it seems like he can hurl cups and books at 60 mph. He can also be really sweet at times but he expresses his frustration through tantrums because that is one of the few outlets he has control over. Secondly is communications. Although he knows 60+ signs, he also puts his personal twist on them. For example, 'more', 'finished', 'open', 'shoes', and 'cookie' are all very similar in sign language. At two, he does not have the motor skills necessary to differentiate these signs clearly. So you need to know all the signs he knows, and then be able to interpret his sign within the context of the moment. Thirdly the way to calm him down is by redirection. A favorite book or toy can often wind down a tantrum that is just beginning. At this point we feel like we are the only ones that can successfully care for him.
With all these challenges, it would be easy to be bitter, frustrated, and burned out. And honestly to some extent we have been through these stages. For me it was a few months ago, for Chris it has been more recently. But God is great and he can provide all the strength we need. Romans 5 says that “we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character and character produces hope, and hope does not disappoint us.” Well, I don't know if I've rejoiced in our sufferings, but I certainly know that I have found blessings in these trials.
First, it has caused me to focus more on our family. It is easy in today's society to get caught up in the pursuit of power, wealth, and possessions. Taking care of Joshua has forced me to get more involved in his life and has led to us spending more time together as a family than we would have otherwise.
Secondly it has made us grateful that God has entrusted us to him. We have spent a few nights in the Special Care Unit down at Children's Hospital and it has been both profoundly sad and profoundly angering. It's sad because there are twenty beds (all full) in the unit and we would only see a handful of parents around. I don't want to be too judgmental since I don't know all the circumstances involved but it seems that the parent/child ratio is way too low. This is where the anger comes in. I can't help but think that many of these fragile children have simply been written off by their parents. I am so thankful that we have the opportunity to raise Joshua in a home that he can get the attention and help that he needs. Because he is a special child of God and he deserves a chance.
A third blessing has been the exposure of our total reliance on God. As I mentioned above Chris and I have both hit our physical and emotional limits time this past year. There are only so many nights in a row you can stay awake and be on the watch for seizures. Many nights my prayers have ended “God, please wake me up if there is a problem.” We have come to the realization that Joshua's problems are outside the realm of medicine to correct. We just have to rely on God day-by-day for improvements.
Another blessing has been the encouragement we have received from the people that love us and Joshua. From the Sunday School class bring us dinners, to our pediatrician following up after neurologist appointments, to all the workers at his school, we have received much encouragement both emotionally and, more importantly, spiritually. I can feel the prayers giving me strength to face each day.
As a last note, my friend David pointed out that this is also an opportunity for us to share a blessing. I'm not sure where God wants us to go with this but I'm sure we'll find out. In the grand scale of things, many parents have children who are in far worse shape than Joshua. Knowing what we've been through, I can't imagine if I had I child with severe, life-long problems. I pray that we can use our experiences to relate the love of God to others.
My final take-away is this. It is really easy to get caught up in the emotions of your circumstances. When this happens, take a step back and realize that God is in control. While you can't make it by yourself, you can face any problem this world has to offer when you embrace His strength.
Thank you for all your prayers for us and for your time to read this rather lengthy post.
