The combo of frequent high carbs and his carnitine and MCT oil have really helped. However, drinking with a straw and gum chewing are what really developed his oral muscles. We now chew gum a lot. Though out of respect to my husband we make herculean efforts not to let gum go anywhere but well-wrapped in a tissue and into the kitchen trash.
All the kids were quietly lining up as the speaker handed the suckers out. Except Jack. He stood up on the stage and hollered, "Mom, I need to spit out my gum!" Then he jumped off the stage and ran down the aisle loudly repeating his need to spit out his gum. I'm holding a cranky 18 mos old while desperately searching for a spare tissue.
Too late, Jack reached me already making a spitty sort of face. What's a Mom to do? I held out my hand and he spit his gum into my palm. Back up the aisle he ran, just in time to get the last sucker.
Sam's question- "Does every one of these taste the same?"
Deep down my husband and I knew something was not right with Jack since his birth, but we had not been forced to face it until the morning of his "crash". What followed was a series of little deaths as we learned more and more about his condition and how it would change our daily life, culminating 10 months later with the news that Samuel was also affected, though blessedly not to the same extent. It's been a long year.
It gives me comfort at 3:00 a.m. when I'm awake wondering...
I have unusual teens in that none of them really like to talk on the phone. Our family policy is that you get a (cheap) cell phone when you can drive and until then you share the (cheap) kid-cell phone with the other kids. Therefore our 17 yo, Luke, has a phone and the three girls all share a phone. The rest of the boys are still too young to care. Luke's cell phone has a broken screen but he can't get a free (and cheap) upgrade until December, so for now he's stuck with it. He really doesn't care because he would have to be lying in a ditch needing help before he would voluntarily dial someone anyway. However, as I was helping him pack up his phone and charger for his three week trip to Guatemala I became concerned that he might have trouble making an international call without being able to see his screen, so I swapped the girl's phone with his.
I forgot a few things, things like...
1)The girl's phone says "Bump it to the trumpet" on the outside screen.
2)The girl's phone says "Hey, girl!" when the phone is opened.
3)The girls asked me to pretend to be Aunt Petunia from Harry Potter- and they recorded me. The ringer doesn't ring instead it repeats, "Mummy is calling, my little diddykins", over and over and over.
4)The girls programed all this and locked it with a password that no one remembers.
My husband called to remind me of the above, ostensibly to ask for the password so they could fix the situation. But he had already rightly guessed that no one would know the password. In reality, he simply called to share the situation with me because accidentally humiliating your teenage son is just good clean fun, especially if your spouse is the guilty one.
Somehow I have the feeling that I will not be hearing my son's voice for about 3 weeks. I'm just glad there's email.
Sam's crankiness, Jack's poolside throwing up all make sense now. Someone invited the flu to our house without my permission. Probably the same someone who always spills ice on the floor in front of the fridge. The upside is I am showing videos in the middle of the day with absolutely no guilt, which means I have time to sit at my computer unmolested. I thought I'd transcribe another section of my Mom's old talks about suffering.
Remember that I am transcribing lecture notes as they were written, and Mom probably expounded on certain areas. Some of this section seems a bit abrupt when typed but try to imagine a sweet voice and an incongruously loud laugh.
Why is Suffering In The World?
Years ago when we lived in Boston, my friend, Peggy Holley won a radio contest in my name with the following ditty:
God made a beautiful beginning,
But Man spoiled his chances by sinning.
We hope that this story will end in God's Glory,
but at the present, the other side is winning.
We live in a world where there is sin. When we put on our Lord as our savior, we don't get plucked up and moved to a perfect place. He leaves us here to contend.
We are told that Satan is a fallen angel.
2 Peter 2:4 "For if God did not spare the angels when they sinned, but cast them in to hell..."
Jude 6 "And the angels that did not keep their own position but left their proper dwelling have been kept by him in eternal chains in the nether gloom until the judgement of the great day"
We know that Satan has powers. He tempted Jesus when Jesus was lead into the wilderness. He had to have had the power to fulfill these temptations.
Jesus himself, called him the Prince of this world.
1) John 12:31...now shall the ruler of this world be cast out.
2) John 14:30....for the ruler of this world is coming. He has no power over me.
3) John 16:11...because the ruler of this world is judged.
We are told in 1 Peter 5:8 that he walks around like a roaring lion seeking someone to devour.
So with suffering we have 2 choices.
#1 God is the author of suffering and He puts it in the world to hurt, to refine us, to test us. That God has absolute control and plans suffering as a tool....
#2 Satan has power too and he tries us with his powers. That it is Satan who wants us to suffer. That it is Satan who wants us to sin and suffer.
The only perfect place where there was no sin, sorrow, or suffering was the Garden of Eden. When man and woman made the choice to disobey God and eat the wrong food, they made the choice for all of us to have to live in the World.
God did not want to be worshiped by robots... He wants us to worship Him freely. He has a perfect will and a permissive will. He allowed the death of our child but he did not design it. He could have prevented it... but my son had the choice of running across the street or waiting for me as he should. Once the choice was made, we have to live with the circumstances that come from that choice.
When we were told that, "God must surely love you because of the suffering you are going thru." I was less than Christian in my attitude.
Of course, they got their idea from Hebrews 12:6 "For the Lord disciplines him whom He loves."
Discipline and Love may go together but the God of discipline and love does not cause suffering just so one can grow from it.
It comes down to would you rather believe that God made suffering and plans it for us or that we live in a world that is not longer perfect and Satan has powers too.
This wiki entry was my day. We sent our oldest child, a 17 yo son, off to Guatemala for a three week intensive lanugage school, studying, you guessed it, Spanish. He is such a great kid and has turned into a great, shall I dare say, adult. A seriously fun to raise child, except for a brief time when he was 6 and inexplicably wanted to spit everywhere. This trip is a big deal for him and for my husband and I. A day of independence for him and a day of letting go for us. I had so many images of a happy, maybe even tender farewell, images of my husband and I praying with him before they drove off, taking photos as they left. Not.
- my parents also lost two close family friends to unexpected deaths.
- My father lost his job and we moved from Maryland to Canada, and then from Canada to New Jersey.
- My mother's father died.
- For a while in Canada the doctors thought that I had Leukemia.
- My sisters were teenagers.
For three nights before Jack's first metabolic crisis he kept waking up crying for more and more drinks, carrying on and generally throwing a series of tantrums. Now we know he was exhibiting fairly classic "brittle" behavior. At the time we thought he was merely being a toot and responded accordingly. On the third morning when he was lying in bed unable to call out and having a seizure, I was 10 feet away from his bedroom, sipping coffee, enjoying that Jack was finally "sleeping in". Motherguilt.
Samuel has been waking up, crying, thirsty and carrying on for the last two nights. Impending crisis or Impending Terrible Two's? I can't allow Motherguilt from the past to warp my current relationships with my children. After all, a respectable, almost 2 year old, will capitalize on any parental display of weakness. Especially Samuel, who seems bent on world-wide domination. All I know for sure right now is that I'll get less sleep than usual for the next few nights and I'm praying for wisdom while simultaneously pushing carbs. That should be enough to prevent new Motherguilt for now.
Oh, except of course, my 13 year old just reminded me that I lost her birthday check from Grand-Poppa, and I've not done anything about it yet. Her birthday was in May. Motherguilt.
At the pool yesterday Samuel, the 18 mos. old, had his first ever encounter with a Barbi Doll.
He was splashing in the water near a little girl when he spotted the naked (of course) Barbi bodies lying in a heap at the edge of the water. He moved in nonchalantly to position himself and tried to help himself to the little girl's toys.
I moved in and reprimanded him for taking something that didn't belong to him. The little girl's helpful mother turned and said, "Oh, he can have one." She plopped a redheaded Ariel barbi into Samuel's hand.
While the helpful mommy was watching, Samuel took the doll in one hand and with an amazed expression made an "oooohhh" sound. Then he sat in the water simply enraptured and stared, awed, at the doll.
He continued to stare for a socially unacceptable, disconcertingly, and embarrassingly long moment. Finally, he looked up at me and said something in Baby Language and then returned to staring, awed, back at the doll.
When he reached up to touch the doll's breasts, still awed, I was reminded of the debate among archeologist and art historians over the purpose of the "Venus of Willendorf" and other early fertility sculptures.
Duh, just ask my 18 mos. old son.
The dark green glass bottle holds MCT oil. Jack takes it 3 times a day but actively dislikes it, thus the clandestine dosing. Originally I tried to be up front about it and gave it in apple juice, as suggested by the dietician. It came straight back up along with everything else he had consumed for about, umm, 3 weeks. Most unpleasant. Now I'm continually on the lookout for ways to sneak it into Jack. Baked into brownies or drizzled onto pancakes are the two most successful ways to date. Unfortunately, neither foods are really the cornerstone of a sound diet. Most other recipes I've found require too large a serving size for a toddler to realistically eat. So back to secretive spiking.
It is worth the subterfuge. Jack's geneticist was emphatic that he was prescribing MCT only because I wanted to try it and not because any studies backed its efficacy. Which I understood and appreciated. I don't want a snake oil salesman for Jack's medical care. However, I had read about it on the UMDF website and the geneticist agreed it couldn't hurt. MCT, in anecdotal glory, has made a huge difference! Jack's energy levels have skyrocketed.
Speaking of medical concoctions. I've always bought clear Gatorade to add cornstarch to. The clear because I was holding onto a small vestige of my life before FOD's. The life that didn't include high fructose corn syrup sweetened and dye laden beverages. (Insert supercilious opinion here.) Jack never much liked his "Go Go" juice but would drink it down like the trooper he is. Last time I went shopping for Gatorade they were out of the clear, so Lemon-Lime Gatorade came home instead. Guess what? 8 oz. Lemon-lime Gatorade plus 1 T cornstarch equals liquid Sweet-Tarts.
Until Jack is old enough to manage his own supplements and medications I'll be spiking away. Who knows what other new and bizarre flavors our experimenting may yield. Just don't sit at Jack's spot at the table.