This week has been one full of feeling. The situation referred to in Monday's post set me up for a real week of soul searching and working through emotions. Not really because of that actual news, but I suppose it exposed a lot of feelings that had been inside over the last while.
It is so interesting to me that as time has moved on in this journey, I actually start to revel a bit in these times of sorrow or disappointment. That may sound really strange to you. But for me, I start to look at it as a time when my heart is the most vulnerable to God - a time when He is doing something really big; whether it be in my heart, in Karter's life, in the life of my family, whatever. When all is stripped away and I lay completely helpless in front of my Heavenly Father and cry out to Him, exposed and ready to listen, He is there and He shows me such amazing things.
I wanted to share with you a few things that really brought me through this week. Although, I do not feel ok to share every deepest feeling in this forum, I do want to share with you a few things that may be relevant to you where you are today.
Wednesday night, I had the opportunity to share in a beautiful time of worship. It is always in those really low places that our Father meets us (although He meets us anywhere, anytime) - truly He met me where I was. I felt His presence like I have not felt it in a long time. That reassuring idea that "I am still here for you" washed over me with such overwhelming force. There was a point where we sang over and over "Strength will rise as we wait upon the Lord". And as I repeatedly sang that phrase, I could feel from the depths of my soul my spirit rise up. It was like it was going to leap out of my chest. Then, the worship leader spoke a word about how the Lord hides us under His wing; a place of protection. That He is the shelter of the most high God. That the storms will pass over us and around us, but we are covered by Him. The truth in those words rang so true.
I was thinking about that again today as I was driving, and my anthem song came on the radio. It hit me, there has been this consistent theme that has been running through my life. My Jesus has covered me under His wing. As we have journeyed this past two years, He has not allowed us to be harmed by this storm. Instead where there should have been the crumbling of our emotions, the has been joy. Where there should have been such anger and bitterness there has been such deep love. Where there should have been defeat, there has been an overwhelming strength. Where there should have been the shattering of relationships, there have been stronger bonds formed.
Our Father has taken the brunt of this storm by covering us and hiding us inside of His wing. He has been our strong shelter. That does not mean that we go along merrily in life pretending that this is not hard or that it doesn't affect us in any way. I would not be honest if that was what I portrayed. It is tough and sometimes yes, we want to throw our hands in the air and give up and say 'Why me God?' But it is in those times that we are so quickly reminded of His love for us; He just gently tucks us in under His arm and gives us the cuddles that we need.
There was a point this week where I had entertained thoughts of giving up hope and giving up my faith in this situation. And although it pained me to admit that because it exposed such weakness, the Lord knew it and helped me to share it with someone who I consider a mentor. This amazing woman is also on a faith journey. She shared with me about a point where everyone around her was telling her to give up faith. She was almost at the point to say "fine, if it makes you happy I will". It was in that moment that she realized God was working it all out for good. In the weeks following she had breakthrough - awesome! So we continue to stand, sometimes maybe not as firm as we hope we can, but we stand planted in His word, planted in what we know is truth and we hold on for dear life, expecting that we will see breakthough!
That is really what is comes down to doesn't it? We trust our Heavenly Father to cover us and sustain us in the times of storm; not to keep us from storms. His purpose is not that we would live a life free from hardship and turmoil. Jesus wasn't free of it, why do we think we should be? His life was so much harder than ours and his Daddy was God! And although we need to choose to stand and choose to have faith, we NEVER stand alone! If our feet get tired or our arms get weary He supports us - through encouragement, through friends/family, through word etc. And then we wait, in the expectancy that He will do a good thing. We learn to except our challenges and find someway to consider them a gift.
As I was in the word I found various verses in James 1 that really stood out for me so I thought I would share them with you.
From The Message Bible:
2-4 Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don't try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way.
5-8 If you don't know what you're doing, pray to the Father. He loves to help. You'll get his help, and won't be condescended to when you ask for it. Ask boldly, believingly, without a second thought. People who "worry their prayers" are like wind-whipped waves. Don't think you're going to get anything from the Master that way, adrift at sea, keeping all your options open.
16- 18 So, my very dear friends, don't get thrown off course. Every desirable and beneficial gift comes out of heaven. The gifts are rivers of light cascading down from the Father of Light. There is nothing deceitful in God, nothing two-faced, nothing fickle. He brought us to life using the true Word, showing us off as the crown of all his creatures.
25 But whoever catches a glimpse of the revealed counsel of God—the free life!—even out of the corner of his eye, and sticks with it, is no distracted scatterbrain but a man or woman of action. That person will find delight and affirmation in the action
So friends in the face a hardship and challenges we need to try and find a place within ourselves to consider it a blessing. This is a time of refining; and although painful in so many ways, it is exposing in all of us the beauty that rest beneath the surface of out hearts. And as it says in James, we will 'become mature and well-developed, not deficient in any way'. But know this, we can always take refuge within our Father's shelter. He will never leave us, we can only leave Him.
Saturday, March 21, 2009
Monday, March 16, 2009
Trying not to be discouraged
This morning I had the official "Intake" meeting with Supported Child Development. Right now, Karter is followed by the Infant Development Program. This covers him from birth to 3 years old. Within the same agency is Supported Child Development, they pick up at age 3 and follow the kids through preschool and up to age 6.
Although we are "in the program" per say, it seems that Supported Child Development only follows a child if they go to preschool. As you know, we have registered Karter for preschool and his needs allow him to qualify for additional support. The issue that I became aware of this morning is that he now goes on a wait list for that funding and it turns out that it does not look like there will be enough for him for this upcoming year. Apparently, funding is given out to 4 year old preschool children first, then daycare children, then three year old preschool children.
To top that, if he is not in preschool, he no longer receives support while we are on the wait list. He will remain seeing his physiotherapist and speech therapist, which are SO important (they are actually out of a different agency), but a consultant that oversees Karters case and puts us in touch with all the other services available (such as occupational therapy and others) will not be provided until he gets funding dollars for preschool, which from what she is telling me, could be September of 2010!
You can understand how discouraging this is. Although Karter may developmentally not be 3, he is 3 in actual age in July, which allows him to be eligible to go to preschool in September. Without a support worker, he will not be able to go. For us, we feel like the social exposure for him would be of great benefit for him. Motivation from other children can be such a key thing in development. We all know this by watching both our typical and not typical children, they learn from each other. And Karter is naturally social, so we want to hone in on that skill and provide for him the same experiences that Paige had to build relationships and skills through preschool.
I asked the coordinator of the program if there were other options or programs to receive funding for a one to one worker (obviously we cannot afford to pay a worker our self and pay the tuition for preschool on top of it). Basically, our option is to pay out of our pocket or wait on the list until funding is released.
So I ask for your prayers, we need a miracle here. Somehow, we need more funding dollars to be released so that Karter would be able to receive support for September. Once again, we find ourselves in a real state of limbo - a place I really hate! It can be August or even September before they fully know how much funding they have and who it will be released to; so once again, we wait!
Although we are "in the program" per say, it seems that Supported Child Development only follows a child if they go to preschool. As you know, we have registered Karter for preschool and his needs allow him to qualify for additional support. The issue that I became aware of this morning is that he now goes on a wait list for that funding and it turns out that it does not look like there will be enough for him for this upcoming year. Apparently, funding is given out to 4 year old preschool children first, then daycare children, then three year old preschool children.
To top that, if he is not in preschool, he no longer receives support while we are on the wait list. He will remain seeing his physiotherapist and speech therapist, which are SO important (they are actually out of a different agency), but a consultant that oversees Karters case and puts us in touch with all the other services available (such as occupational therapy and others) will not be provided until he gets funding dollars for preschool, which from what she is telling me, could be September of 2010!
You can understand how discouraging this is. Although Karter may developmentally not be 3, he is 3 in actual age in July, which allows him to be eligible to go to preschool in September. Without a support worker, he will not be able to go. For us, we feel like the social exposure for him would be of great benefit for him. Motivation from other children can be such a key thing in development. We all know this by watching both our typical and not typical children, they learn from each other. And Karter is naturally social, so we want to hone in on that skill and provide for him the same experiences that Paige had to build relationships and skills through preschool.
I asked the coordinator of the program if there were other options or programs to receive funding for a one to one worker (obviously we cannot afford to pay a worker our self and pay the tuition for preschool on top of it). Basically, our option is to pay out of our pocket or wait on the list until funding is released.
So I ask for your prayers, we need a miracle here. Somehow, we need more funding dollars to be released so that Karter would be able to receive support for September. Once again, we find ourselves in a real state of limbo - a place I really hate! It can be August or even September before they fully know how much funding they have and who it will be released to; so once again, we wait!
Thursday, March 12, 2009
to be continued...
Children's Hospital called. They informed me that both our surgeon and neurologist were in surgery yesterday morning thus not making it to the conference. They will discuss Karter at a later date this month.
The neurology nurse did tell me that they are really on the fence with Karter. So please pray for a clear guidance of their minds. Should surgery take place, it will be closer to the summer. That will ensure that his chest will clear up and he will have a better time of remaining healthy.
The neurology nurse did tell me that they are really on the fence with Karter. So please pray for a clear guidance of their minds. Should surgery take place, it will be closer to the summer. That will ensure that his chest will clear up and he will have a better time of remaining healthy.
Sunday, March 8, 2009
The wait is close to being over
I got a call on Friday afternoon from Children's Hospital from the neuro nurse. She called to get an update on how Karter was doing as this coming Wednesday, his case will be presented once again before the epilepsy surgery team.
This meeting will decide whether or not we will be moving forward with further surgery for Karter. The surgery itself, would be the same as last time. It is a resection on the right frontal lobe. They would remove more of the portion that had developed abnormally. They were cautious last time with how much they removed; the philosophy was, taking took much could never be corrected, but taking too little can always be rectified later if need be. I suppose later is where we are now.
Please pray that not only would a decision come quickly so that we no longer need not live in limbo, but also, that the team would be well informed with Karter's condition and tests to date and make educated decisions based on those facts.
We should hear from the neurologist no later than Thursday. I will update at that time.
This meeting will decide whether or not we will be moving forward with further surgery for Karter. The surgery itself, would be the same as last time. It is a resection on the right frontal lobe. They would remove more of the portion that had developed abnormally. They were cautious last time with how much they removed; the philosophy was, taking took much could never be corrected, but taking too little can always be rectified later if need be. I suppose later is where we are now.
Please pray that not only would a decision come quickly so that we no longer need not live in limbo, but also, that the team would be well informed with Karter's condition and tests to date and make educated decisions based on those facts.
We should hear from the neurologist no later than Thursday. I will update at that time.
Thursday, March 5, 2009
Colds, growing up and a little update.
Karter has had a cold for just over a month now. I know, its cold and flu season and it is to be expected. However, it just seems to have gotten progressively worse. The past 2 weeks Karter's asthma has been pretty bad. After having him on his nebulizer 3 or 4 times a day with no improvement, I called the doctor today. He agreed that Karter should be seen. So we took yet another trip to the doctor.
Our family physician figures that a combination of Karter's reflux, asthma and cold most likely have turned into Bronchitis. So another course of antibiotics for a week should tell if that is the case. If things do not get better, we will rethink it again and look into things further.
On a positive note - we had Karter weighed so that the doctor could accurately dose his meds. He is now 26 pounds! A far cry from the 22.5 pounds he was in January. So we are very thankful!
One more week of riding for this session. We then have a 4 week break and resume the spring session in April through June. Today was a tough go at riding, especially with Karter not feeling well. But for the most part, we think he really enjoys it. And there have been some really nice improvements in his tone and head control since January.
Other than that, nothing else much is new.
Our family physician figures that a combination of Karter's reflux, asthma and cold most likely have turned into Bronchitis. So another course of antibiotics for a week should tell if that is the case. If things do not get better, we will rethink it again and look into things further.
On a positive note - we had Karter weighed so that the doctor could accurately dose his meds. He is now 26 pounds! A far cry from the 22.5 pounds he was in January. So we are very thankful!
One more week of riding for this session. We then have a 4 week break and resume the spring session in April through June. Today was a tough go at riding, especially with Karter not feeling well. But for the most part, we think he really enjoys it. And there have been some really nice improvements in his tone and head control since January.
Other than that, nothing else much is new.
Monday, March 2, 2009
Handsome....
...Ok I might be biased! Took this the other night and realized how fast he is growing up.
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