Hands up. Eyes closed. Twisting at the waist as if the top half of him was actually a washing machine agitator. Sunday morning worship is extra special when Matt is with us. Sometimes I just watch others watching him and smile. Other times I think “If they only knew what it takes on a daily basis to get him ready to go anywhere or how much pain he has experienced in the 15 years he has blessed us with his presence. Some would say, “Well, he doesn’t know any better.” I beg to differ. He may not understand it (neither do I for that matter) but he feels it. He doesn’t like it (see above picture) but he chooses not to let his circumstances steal his joy. Oh, if I could only live life the way he does-To be that strong. I think I would have checked out long ago. What joy he brings to others. I truly believe that is his calling. “Matthew” means “Gift from God” but it might as well mean “Acceptance with Joy”. But, as his mom, it is times like this that break my heart.
Another PICC line. Another g-tube stoma infection that won’t clear. Another round of IV antibiotics. A bowel that stops working no matter what I do with his diet. More unanswered questions. More decisions to make for him. Decisions that undoubtedly will involve more pain and more time away from home and school. I try not to question God but sometimes it’s hard. It’s hard when he’s in the hospital and is asking at least every 30 minutes to go home. Or, every weekday when he says, “Mom. Go school?” and I have to say “I’m sorry. Not today. You can’t go to school with a PICC line.”
I have read that, 90% of in utero diagnoses of Down Syndrome end in abortion. Some would use cases like Matthew’s as justification. Not everyone with Down Syndrome struggles with such complicated medical conditions. Many live long, happy and even independent lives. When Steve and I said no to the amniocentesis, we said “yes” to whatever God had in store for us as a family. I liken it to standing at the alter on your wedding day. You stand before God and man and make a vow “til death do us part”. Why? Because we have no idea what lies ahead. God doesn’t give us a crystal ball on our wedding day. If He did, many of us would never marry. And so it is with our children. Some come into the world healthy and stay healthy. Some come in healthy and get very sick or become disabled in some way.
So what do we do? Just as we would for any sick or injured spouse or child. We rise each day, ask God for renewed strength and deal with what’s in front of us. If Matt can take it, we can make it.
Ok it’s been a while since I been able to add a new recipe so here goes. I’m dedicating this to 2 young tubie warriors. This ones for you, kiddos!
Three years ago, right before Matt had his hip surgery, his digestive tract started giving him problems again. I was trying to avoid putting him on laxatives so I developed a green smoothie that I had hoped would help him. I originally put fruit in it and offered it to him to drink. He liked it (sort of) but he only drank 2oz. I knew that was not enough to work so I went back to the drawing board. Then it dawned on me. He has a g-tube! He doesn’t need to drink it so I can remove the fruit and add more greens! It worked. The added greens allowed me to add more fiber without fighting with him about the taste. Now when I give him a bolus feeding or hang his bag for his night feeding he smiles and says, “Ooh! Mooie! Yup. You got it. That’s where the name came from.
Since each child and adult that are g-tube dependent have different issues, I caution you to check with your doctor before changing a feeding regimen and, if you get the ok to to try this, add small amounts at first and watch for adverse effects. I do not recommend making this smoothie with anything else but a Vitamix. The Vitamix blends the greens so finely that there are little or no leave particles to get caught in the filter of the feeding bag. If the filter gets clogged that feeding stops and the alarm goes off. It’s less of a problem for bolus feeding but, if there is difficulty in breaking down solids, it could cause issues. All of the ingredients are added to the Vitamix container by weight. That way there is no measuring so it comes out the same every time. It also makes for a quicker blend. Just put the Vitamix container on a food scale and add the ingredients. No more measuring cups and spoons to wash.
3oz + 5oz of peppermint or chamomile tea
6oz of greens (your choice)
2oz of fresh Aloe Vera gel (optional)
3oz avocado (or 2oz of avocado + 4 tsp of organic olive oil)
Turn the machine on and increase the speed to Variable 6 and blend for 10-20 seconds or until all the ingredients are combined.
Makes 2 14oz smoothies. Matthew’s night feeding is 500mls so I rinse the container with enough filtered water and add it to the feeding bag to ensure he gets the full dose. I have also added 1 tsp of fresh pureed ginger when Matthew’s stomach was more upset than usual. Feel free to experiment with different greens. Sometimes I will buy the large bag of Power greens or spinach from Costco along with Romaine lettuce hearts. I also keep a close eye on the local farmer’s market for greens that are on sale. Parsley is great because it helps settle the stomach.