When Do You Let Go?

I sang for a funeral today. A lovely, elderly lady, who had many children, grandchildren, family who loved her. The celebration of her life was simple, peaceful, perfect.

As I sang, I started to think of how we could have lost Andante this summer. Only 15 months from his birth, and I was already facing the possibility. I know, it could happen any day, any time, any where, from any thing. Still, no one thinks they will ever loose a child.

I knew I could not let myself think about this any further. I had a job to do. I had to sing this mother to her new mission: to lead her sons and daughters to their next existence.

As the Mass progressed, I came to the song that I wrote when my grandfather passed away. The family that I was singing for always requests me to sing this song. And before today, it was always a pleasure. Today, it was bittersweet.


I made it through. I sang the Ave Maria and Precious Lord, along with some others. As I sang, I was so into my “professional mindset” that I breezed through them like always. I gave the songs the emotion they call for, but as for what I was feeling… I was turned off, tuned out, shut down.

When the Mass ended, I walked my accompanist out to her car, and then headed for mine to go and pick up my son. The words to Heavenly Garden began to play in my mind.

I worry every day. What next? Will he be ok? Could that kill him? Will I loose him? What if I am not there? How would I ever survive without him?

And then I began to think of my friend Gracie, whose little boy Aaron is in the hospital again, fighting for his life. (See Right Column to read about Aaron) The Doctor’s do not know what to do other than to keep him comfortable.

How does one deal with the impending death of a child? When is it time to let him go? [Have I] done all that I can for him? What if we wait one more day – will he suffer more than is necessary? What if we let him go and then they find the cure soon after? How do I let him go?

All questions she has asked before privately; now openly. Who has the answers? Who has the right to even try to give suggestions as to what this poor mother should do? Why Lord, does she have to make this choice?

I know what I have told her. I can only hope that if I was ever in this situation, God forbid, that I would be strong enough to be able to make the choice. I don’t know if I could. It is easy for me to say what she should or shouldn’t do now. I am not in her position. But I do think about it often since Aaron has been in the hospital. What if I have to let go of my precious son, or just as worse, one of my girls?

God, see me not to that day.

Another mother of our group, Kendra, who’s two sons have Eosinophilic Esophagitis (EE) knows all too well how much closer to death we all live. Reprinted with her permission, she wrote this in response to Gracie’s call for answers:

When do you let go? You let go when Aaron is ready to be let go. When what is keeping him here is his love for you, knowing that you are not ready to let go. Is he there yet? I don't know. You've heard what Aaron has to say. What does your heart say?

Praying for wisdom. No. I cannot bring myself to pray for wisdom. To pray for wisdom is to yearn for something logical in the most illogical of circumstances. That is a prayer that will most certainly go unanswered. I will pray instead that you [and your family] can open your hearts to acceptance. Acceptance of God's will, whatever that is. Acceptance of Aaron's life as it is now, and as it is intended. Acceptance that the answers you seek may remain unanswered. Acceptance of the hurt that you have now (will always have!) ,for the pain that you child has endured.



When does one let go of a loved one? When they are only remaining here for your sake and not theirs.




Seriously!

TinaMarie

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At the End of the Day

I still have many things to learn here, but this I know is true;

Yesterday, we were all individually thrown into this cold, heavy world of uncertainties. Today, we can make this journey together a little lighter for one another. And Tomorrow, we will be a little warmer, and a whole lot richer. ~TM

Seriously!

TinaMarie

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Welcome To Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coloseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Copyright © 2007 Emily Perl Kingsley. All rights reserved



Seriously!

TinaMarie

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A Good Night's Sleep

Well, our mystery hives seem to be over. They lasted for about 5 days, which is normal. I just wish I knew what they were from. I did not add anything to Andante's diet before the hives, and I did not take away anything during the hives, and now that they are over, I am still feeding him the same as before. This leads me to believe that the hives were environmental. OH JOY!

We were having some pretty strong winds for the Valley last week, mixed in with warm temperatures, along with the corn/nut/cotton harvests. It could have been any one of those things or all of the above. At least I know I don't have to worry about pulling another food out of our household. All the children had a round about with a low grade fever that just would not quit, but no other signs other than the runny noses and hives. Better that than anything else, but it made for a tough week!

*******

Yesterday, after school and dance, I decided to take the children out to Aria's Padrinho (Godfather) Scotty's goat ranch. It was kind of a two fold reasoning for going out there; I need Scotty to bring hay bales for Aria's party next weekend, and the kids could run carefree for a while since they had been pent up for almost a week now.

First thing out of the car, the children ran into the barn and started to feed the goats, who of course, had just been feed (yeah, I know... great timing, Tina!!!). I was leary, as I am sure Scotty could tell. He kept telling me not to worry... funny, he used to tell me that when he was in my music class as an 8th grader some 8-9 years ago. "Oh, Miss TinaMarie," he used to say, "Don't worry, it'll all be fine."

I could always count on Scotty to be my mellow yellow.

So as the children fed the goats, I could see little itty bitty hives starting to form on Andante's face. I fought the urge to pull him out, dose him, and take him home. He was having so much fun with his sisters running up and down the feeding trough, trying to entice the goats to eat from his hands so that he could grab on to their necks to squeeze some love out of them. I just wanted it to last a little longer.

As Scotty and I talked about his Goddaughter's birthday party and his trip to Vegas the following week for a Bachelor Party (Lord, watch over this big dummy for me please!), we took the kids through the barn to the corrals where he had some goats running around. I looked down as I was the last to step through just before Scotty and panicked. ALMOND SHELLS! Oh Mercy, Andante is heading straight for them!!! In comes Mamma Bird to swoop up her young and fly them to safety. Needless to say, Andante was not happy. I explained to Scotty that even the shell will cause him problems, which he didn't know. He thought it was only the nut. Needless to say, we avoided that area, and everyone was wiped down before leaving, but that is for later on in the story.

Once out at the corrals, one by one, Padrinho Scotty scooped up the children and set them on their way inside the pen. EEK!!! Panic set in. My mind was going a mile a minute, and I KNOW Scotty could see it. "Don't worry", he said calmly, "I didn't feed them any almonds today, and there are none in the corral." I bit my tongue, fully aware of the fact that the proteins from the almonds could be in the goat droppings, and I did so only for one reason...

Andante was chasing the goats towards his sisters. The goats would run right up to the girls, the girls would SCREAM at the top of their lungs, the goats would SCREECH to a halt, and then jump and run the other way. Andante was falling over laughing at the scene he was causing. The minute the goats would come back his way, he would start chasing them over towards his sisters again to watch the whole process repeat itself, and then buckle over in laughter. I just did not have the heart to allow my almost uncontrollable fear take over and pull him out of there and stick him in the bath tub. He did fall over a couple of times, and Scotty would help him up if Andante could not get himself up. All the while my OCD was in major overdrive and it took everything I had to not say a word or let it show on my face. Thankfully, years of stage performing works wonders... unless of course, I am around a good friend like Scotty who knows me all too well.

Finally, the children had enough and wanted out. Allegra was airlifted over the fence (she still had on her dance leotard and flip flops... you can tell this was a last minute decision.), Aria climbed her little dare devil self up and over, and Andante wiggled his way through a space left by a missing board. Once we were back through the barn, somehow, without my knowledge, those little darlings of mine sweet talked their Padrinho into tractor rides. I tell ya... for as good as those two are at advocating for their brother, they are 100x better at advocating for themselves and getting exactly what they want. I wonder who they take after??? lol

October's visit to Padrinho's goat farm - Padrinho Scotty, Ari, & Rory

October's visit to Padrinho's goat farm - Padrinho Scotty & Dante

October's visit to Padrinho's goat farm - Padrinho Scotty & kids

After a busy day of running around and on the farm, we headed out to Los Banos to pick up some things for Aria's party, dinner, and clear Benadryl... just incase the hives were from the coloring

We got home. We ate. We bathed. We brushed teeth and hair and took our medication. We said our prayers. For the first time is a week or two, everyone slept through the night without a peep... even me.


Seriously!

TinaMarie

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The Miracle of Horchata

Ahhhh... a nice, tall, cold glass of horchata (minus the cinnamon, of course!). What could be better?

I tell ya, one of my favorite times of the year is in December. Not only is Christmas right around the corner, but so is the Our Lady of Guadalupe Fiesta, and with that comes HORCHATA! Say it with me now... HOR- CHA -TAaaaaa!

Ah, yes. It has a lovely ring. And it is as simple as boiling water. Well... almost.

Horchata is a Spanish drink made of rice, water, sugar, and cinnamon - basically, rice milk with flavor. Of course, when you have friends in the Mexican community here like me, you can get yours made special without the bane of my exsistance. Add a little ginger and I am good to go!

I have always loved this drink, especially in the summer over ice, but for me, I could drink it anytime. And now, with Andante on rice milk, I am free to indulge all I want... and free to cut back on the massive amounts of sugar a real horchata recipe calls for. With the commercial price of rice milk these days (almost $5.00 for a 32 oz. box), heck yeah I am gonna make my own.

So I did. Yes, I took on the task today and made my own rice milk. It was scarily easy, except I got a bit ambitious and double the recipe right off the bat, NOT realizing just HOW much water I was going to be pouring into the rediculously small bowl that I started off with. All I can say is thank God for the immersion blender.

At first sieve, it was a bit too thick, and not very sweet, so I added (what seemed like a ton of) water, some pure vanilla, and some coconut oil. In the end...after Lord knows how much water, I ended up with a gallon of rice milk that will have to be cut in half with even MORE water when served, all from two cups of Thai jasmine rice.

The estimated final cost: 50 cents

(Yup, you read that right. 50 cents. Incredible.)

Lesson learned: I will definitely be making my

own rice milk for the boy from now on.

Now, I just have to figure out how to get the added calcium in there. Do you know how hard it is to find calcium that is not "whitened" by yellow dye? (not easy, I tell ya!)

So off I go to search. Seek and ye shall find.


Seriously!

TinaMarie

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Out of the Mouth of Babes

This picture is only of Allegra because she noticed one day while I was editing posts that

she was the only one who didn't have an individual picture posted yet. So here's to you Rory!!!

The compassion of children amazes me. Especially between siblings; there is a special bond that is unbreakable. Even if the siblings do not talk every day or even for years, there still remains an intense bond with the person you spent your childhood playing hide n’ seek with.

I watch my children interact with each other and marvel at the immense love and affection they share for one another. I am so grateful for that love. It is a love that has saved my son’s life many times now, and I am sure will again in the future.

The best two advocates for my son are his two sisters. For example, at Aria’s dance class last week, the instructor thought they did so well, she decided to give them all a piece of candy. Aria (who will be 4 next week) said, "Tanks, but no tanks. I cannot have candy because Tay (Andante) is allergic and the dye on my hands might make him sick."

Honest to God! I know… amazing, huh? If I didn’t know my children, I would think any little child saying that was incredibly well coached, and was not fully aware of the impact of those words. But, as a mom who has had to educate her young children on life and death and how quickly a life or death situation could present itself in our family, I know they truly understand...and more often than not, much better than the adults do.

Now, mind you, my children were never allow to have much candy before this, but prior to Andante’s diagnosis, I would have let Aria have the piece of candy the teacher was offering. Since his diagnosis, I don't let them have anything that has high fructose corn syrup, artificial flavors/colors, etc., except on special occasions. It’s better for them and for their brother who is allergic to the food colorings. But to them, it is not about the ingredients in the candy they are avoiding. It is for their brother.

They know if he eats, or touches, or smell one of his allergens, he could get really sick, swell up (like they saw him do last time), choke, and die. They know all about death since we have never hid it from them and they have been to a number of funerals in their short little life times. They understand that if Andante were to die, they would never see him again, even though he would be safe with Jesus. Because of this, they are CONSTANTLY vigilant.

At the end of last week, I had asked Allegra (5.5yr) to pick up her brother's sippy cup from one of his typical after snack quarterback practice throws. You could see her thought process as she looked at the cup, paused, then looked at me and said, "I can't. I don't know what is on my hands. But if you wait a minute, Mamma, I'll get a wipey and wipe my hands, and then I will get it for you."

I was so proud of her. My eyes filled…again.

On one hand, I agree with the psychiatrist…to a point. My children should not have to worry about this. They should have a care-free childhood. They should not have to stop and think "do I need to wipe this down,... do I need to wash my hands,... do I need to avoid eating this?" But reality has dictated, and they have to. Because they do understand, and because it is for their brother, they are more than willing live in avoidance of some things, tell people about his allergens with unbridled candor, and make sure that he is safe.

I have shown them the Epipen, and how to use it. I had them near me when I had to inject their brother back in June. I did not want them to be swept out of the room because they were "too young to see" it. Yeah, it totally scared them, but honestly, it was the best lesson they ever could have learned. They did not like the crying, but they saw him after when his reaction went down and connected, for themselves, that the medicine in the Epi helped save him.

Allegra and Aria know how to use the Epipen Trainer, and they only use it when I bring it out. They know his Epicase is NOT something they get into unless it is an emergency, but it is reachable by way of standing on a chair should they ever be the only ones to be around to administer it. I don’t foresee that happening since I am with them all the time, but I do have an outside laundry porch and he could react to anything at anytime, be it instantaneous or bi-phasic, and time is extremely limited to get him help. They know where their Benadryl is and where his is and they do not get into his. They also know that Papi & Mamma may need an Epi someday as well.

I have recommended to other Food Allergy Moms to keep reinforcing the importance of avoidance and advocacy with the siblings of the FA child who are not affected. Reality is they will get it and they will be their siblings’ next best advocate to themselves. I know it sounds like a lot for a 4 and 5yr old, but keeping them ignorant may do far more damage. My girls were never picky eaters, but now, they choose what to eat and what not to eat based on if their brother is there or not, so as to keep him safe. NOT because I make them; I would suggest it, but after the June incident, they are adamant about keeping him safe at all times, and won't even accept the breaking of the tiniest rule, even from me.

Children will surprise you if given the chance. Just keep it at their level of understanding. There are some great videos and books available. There is a video on you tube (someone had the link here once upon a time) where kids talk candidly about their peanut allergies. After my girls watched that video, especially the part where one child talks about having a reaction in school, my girlfriend, who is one of the lunch ladies at the girl’s school, tells me my girls advocate frequently, regardless if I am there or not. Hearing it from other children who have FAs really helped Allegra and Aria to grasp the concept of FAs (this was pre-Dante reaction). Then with the June incident, the measures they take to keep their little brother safe, was set in stone. What an amazing foundation Andante has.


Seriously!

TinaMarie

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