I’ve been wanting to write for awhile now about life at home with Mattie, so I asked our dear friend Aaron James to come spend some time capturing some of the more intimate moments of our life.
I want to share the nuts and bolts of life at home with a child with significant medical needs.
It’s not all fun and games, but my child is living and breathing and happy.
It’s lots of hard work, and….
Mattie sleeping peacefully amidst all of the things that keep him strong and are helping him to heal and grow.
To the right in the foreground is his ventilator. It helps him…
BREATHE…and grow and heal.
It makes a hum and whirring noise that is somehow comforting.
Behind the ventilator, you will see the oxygen concentrator and back up oxygen tanks for if the power goes out.
This is the suction machine. A child who has a trach can’t expel secretions orally, so this machine is like a tiny vaccum. We insert a catheter into the trach and this machine sucks out the “boogies.” I know, it’s glorious and glamorous.
The little thing that looks like a plastic baggie is the suction catheter.
Mattie is fed through a feeding tube. You can see it clearly here. After he is more stable respiratory-wise, we will look at gradually introducing oral feeds. Mattie hasn’t fed orally since he was 2 months old, so it will be quite a learning process.
This particular tube is a GJ tube- meaning he can be fed in one of two ports. The Gport goes into his stomach. He is finally receiving all of his feed there now. The Jport, goes into his jejunum- that’s his bowel/part of his small intestine. When he was very sick, and recovering from heart surgery, he could only tolerate feeds in the Jport, his stomach had just shut down completely.
The tube leading out of the GJtube to the far right, is the feeding tube that is connected to the feeding pump. When he is not feeding, that tube can be disconnected. When we travel his feeding pump fits into a little backpack.
JGtube up close and personal. When this is removed one day, Mattie will have a scar here that will look a little bit like a 2nd belly button!
This is my beautiful boy. Scars and all. Living, breathing, loving….
Mattie does not love having his neck cleaned.
It’s all a matter of perspective. What do you see when you look at my son?
I see a child with pouty lips, a precious dip under his lower lip, a tongue that sneaks a peek when he’s napping, eyelashes that curl just perfectly.
Perfect in every way.
We’ve all got our issues. Some of our scars show, and some we keep neatly tucked away just under the surface. Some of our issues are blatant and obvious, and some of us hide them well, or at least we try. Your scars and your issues do not define you. They certainly have great impact on who you are and how you think, but they do not EQUAL you. Mattie is not defined by Down syndrome. He is not defined by a broken heart that has been sewn back together. He is not defined by his scars. He is not defined by his need to have massive amounts of help eating and breathing.
Mattie is Mattie. My gorgeous, kind, gentle son.
Everything Mattie has lived through in his first 16 months of life, and what he has ahead in the next year, is part of his journey.
It is part of my journey.
It is shaping us both.
It is shaping my family.
We’ve chosen not to wear the struggles like a banner of self-pity, we carry them with joy, knowing that He who promised is faithful to compete all that He started in us.
We carrying them knowing that “…suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit, whom He has given us” (Romans 5:2b-5).
The photos that tell this part of the story are courtesy of Aaron James. Please visit his blog or email him at firstname.lastname@example.org, if you’re in the Kansas City area and need a great photographer!
More to come…..