Tuesday, October 18, 2011


We are into week four of this regression period. It is very discouraging. Normally after two weeks Cameron gets better and comes back around. I can't help but think things like "Is this the beginning of the permanent decline?" or "is he going to get better this time at all?" He is still happy but tired and not able to do things that were easy for him before. He is much more sensitive to noise. He is getting overstimulated much easier and stiffening up frequently. Thankfully he is still seizure free.

We still have no diagnoses. All tests came back negative. They will be scheduling a muscle biopsy soon.

I've reached a weird place. I'm not sure I even want to know what he has anymore. I'm afraid if they tell me that he for sure has mitochondrial disease that I will break. I don't know that I can handle it. It breaks my heart to read blogs and see videos of all the children with this awful disease.

My heart breaks even more to think my angel could have this ugly chronic disease.

Please continue to pray for peace and strength for our family but most importantly for Cameron's health.

Revelation 21:4
He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.

Wednesday, October 5, 2011

Praying for Peace.

I had some awful dreams last night. About things I don't even want to speak aloud. Suffice to say they were about my worst fears for Cameron and our family.

It's been a while since I let myself get to that raw place and this morning I'm climbing out of it again. 

Cameron has had a rough few days and has been in another phase of regression. I suppose that is what has brought these feelings back around, but its OK because he WILL come through the other side and regain what he seems to have lost. 

When I really think about it I feel selfish and silly for letting these setbacks get me so upset. Cameron is a beautiful and fairly healthy boy and a tremendous blessing. There are other families out there that I know or just follow online and their everyday life has so much more pain. I think that knowing what they go through helps me to appreciate what we have but at the same time it scares me for what they say will come.

I just thought I would share a few songs and scriptures that help me in times like these in hopes that they may touch someone else as well.

Mk 16:17...........these signs will follow those who believe: In My name they will cast out demons; they will speak with new tongues; ...they will lay hands on the sick, and they will recover.

He gives power to the faint and weary, and to him who has no might He increases strength . Isaiah 40: 29

Psalm 30:5
Weeping may endure for a night, but joy comes in the morning.

Psalm 34:4: "I prayed to the LORD, and he answered me, freeing me from all my fears." 

Sunday, October 2, 2011

Just a few of the reasons why...

this boy is one of my most treasured blessings.

His smile will melt your heart.

He is completely pure.

His laugh is contagious every time.

He will crawl across or through any barrier just to kiss you or gently lay his head on your knee to give you love.

Even on the worst of days his sometimes too slobbery kisses will completely turn your frown upside down.

Every time he hears music he claps excitedly.

No matter how upset he gets at being poked and prodded for tests or blood work-mommy singing will bring a smile of relief and he just snuggles his head onto my shoulder.

The look of pure joy on his face he gets when his big brother looks his way.

The second daddy comes home from work he begins squawking as loud as he can until Cody picks him up and then grins so big!

The delight in his eyes every time someone speaks to him.

The warmth he radiates when we snuggle every day at nap time.

Even though I spend most of my time taking him to therapy and trying to teach him-we have learned far more from him already.

No matter what we may face in the future with Cameron's disease it will all be worth it just to spend my days with him.