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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

They have a voice!

This year marks a full three years of blogging in Lessons from Matthew…now Lessons from Matthew & Isaac! Theresa has been one of my best editors and constructive critic of what I write. This week I am handing over the keys so-to-speak. I am letting Theresa take over the blog and get a glimpse of our lives from her perspective. Also, a little treat in the form of hearing from Isaac as well…I feel like I did when I let Hannah drive off in my car by herself for the first time…

Isaac chillin' while on mommy's lap in the hospital

Isaac chillin’ while on mommy’s lap in the hospital

The past couple of weeks has been very challenging for our family. We all shared a “cold”. Sarah Anne and Isaac were the most severely affected and Isaac ended up in the hospital for another week stay. If you have experienced a loved one in the hospital you know that this time is very trying on the whole family… financially, emotionally and physically. Hannah and Megan stepped up in amazing fashion, again. They helped maintain the household which included caring for Matthew and Sarah Anne the majority of the time…not easy with an already cling-to-mommy girl was not feeling well with a double ear infection. Kevin did not return home during that time. He would go straight from work to the hospital back to work. I was at the hospital when Kevin was at work then rushed home to take over for the girls. He and I would literally trade spots in the hospital turn around. Needless to say for many reasons there was great celebration in our home on Thursday. In more ways than one! It was Megan’s birthday!

This morning as I sat watching Calvary Church’s Palm Sunday service via the internet while home alone with our three youngest, I was reflecting on this past week and the Blessings God has bestowed upon us through Isaac’s first major illness. As I sang “Hosanna” along with the congregation I realized that during this past week I had not been full of fear, despite Isaac’s struggling to breath, being on the ventilator and all the circumstances.

Praise is rising, eyes are turning to You, we turn to You
Hope is stirring, hearts are yearning for You, we long for You
‘Cause when we see You, we find strength to face the day
In Your Pres- ence all our fears are washed away, washed away

Ho- san- na, ho- sanna
You are the God Who saves us, worthy of all our praises
Ho- san- na, ho- sanna
Come have Your way among us
We welcome You here, Lord Jesus

Hear the sound of hearts returning to You, we turn to You
In Your Kingdom broken lives are made new, You make us new
‘Cause when we see You, we find strength to face the day
In Your Pres- ence all our fears are washed away, washed away                 Paul Baloche, Hosanna

As I look back and think of how much worse it could have been I am so incredibly grateful. Isaac had RSV (respiratory syncytial virus). We have been warned that RSV is about the most dreaded of “colds” for little children, especially fragile trached ones such as Isaac. The “praise is rising” has to do with the fact that Isaac was only in the hospital for six days. Of those six days he spent four of them on a vent wich gave him a much-needed break. I think we had several factors in our favor, first: we caught it early, second: he had been receiving immunity rich antibodies from mommy’s milk which probably lessened the severity of it, and third and most importantly: God’s Grace was upon us.

If you ask a parent of a child with a trach I think many will tell you their greatest sadness they face is loss of their child’s ability to speak, coo and laugh. It is a loss we mourn greatly as a family…although Isaac’s eyes make up for his inability to “speak”. During this most recent trial we received the blessing of Isaac discovering his “voice” while on his last night on the CPAP machine (a stepped down ventilator). CPAP provides positive pressure to the lungs, but the pressure will take the path of least resistance. So, some of that pressure went up past his voice box instead of down to his lungs. He quickly learned to manipulate the air once he determined the noises were his noises. I admit the first night he was on the ventilator I sat holding him with tears streaming down my face filled with joy at hearing little noises coming from my otherwise “muted” baby. Kevin was able to catch about 40 seconds of video that did not have all of the vent’s alarms sounding.

So, once again this week we feel He most definitely is “the God Who saves us, worthy of all our praises”!

My parting thought is an exchange I had with our three year old, Sarah Anne as we participated and worshiped with our church family via the internet. As I was singing along (and crying a little with Joy and Thankfulness), Sarah came to sit with me. I told her I am so thankful to God for protecting Isaac, that he got better so fas,t and is home again. We were discussing that Isaac is a gift from God and she said “God knew he belonged with us”. Oh my goodness…She couldn’t be more right!

Thank you all for your prayers and support. You are most definitely a buoy in times of turbulent water and a reassuring point of reference during the calm seas.

You can connect with me (Theresa), via Facebook or at [email protected]

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