When Grandparents of Special-Needs Kids Come To Visit, Magic Happens…

“What children need most are the essentials grandparents provide in abundance. They give unconditional love, kindness, patience, humour, comfort, lessons in life and most importantly COOKIES!!” (make that GF cookies!)

Last year I wrote “The Visit” as my father and my son were reuniting after more than a year. I also wanted to honour all the grandparents who are in the front lines, to help, support and comfort us.

After more than a year away from us, my parents are finally back . . .

This past year has been difficult. The detox reactions can be very intense, both for our children and for the entire family. We all know reversing the damage that has been caused to our kids is a gargantuan task. Thankfully, with every difficult moment in the past year we have been rewarded with wonderful gains and beautiful moments. It is really extraordinary to witness a soul blossom into the personality that it’s always meant to be. And it is even more wonderful to be able to share these victories with love ones.

While we all work hard to make our children better and try our very best to bring them back, only the parents, the caregivers, the grandparents are able to really appreciate the magnitude of the ongoing miracle that is unfolding. This year, just like last year, my parents will have witnessed a rollercoaster of emotions. A lot of Firsts and magic moments, and some more difficult ones (full moon did not spare us this year either!!). But all in all, they will leave once more with an even better understanding of what we do, why we do it, and why we fight to spread the truth. They have become Thinkers and are telling their grandchild’s story everywhere. They understand it is possible to make them better, and, for all this, I am very grateful.

This year, more than ever, they leave with beautiful new memories of their grandson playing with his little sister, and of him attempting to tell jokes. They leave confident that we are on the right path, but most importantly, they leave with an intuition they did not have last year, that perhaps Recovery isn’t that distant dream anymore . . .

primapic

~Prima

 

The Visit (originally ran 06/21/2012)

Pacing back and forth, Aki Mac (the nickname my children have given to my father) is impatiently waiting by the door for the school bus to emerge from the street corner. In a few minutes, he will be reunited with his grandson. It has been a year since they last saw each other.

The minutes seem endless. As I watch him pace outside the house, anxiously looking at the street corner, I allow my thoughts to drift back in time…. Aki Mac has been by my son’s side from the moment I decided to embark on this journey. I first decided to start the diet and a few supplements when I went home for the summer after giving birth to our daughter. My dad was the one running after D in hopes of giving him his supplements. He made sure he ate his new GFCF cereals or bread, he kept him entertained and happy so I could take care of the baby with my mother and rest a little.

Throughout the past 4 years, my parents have flown to see their grandchildren at least twice a year. When Aki Mac is in town, it is always fun. He takes our kids to the park and he takes them swimming. If we are on vacation together, not a minute is wasted. He is always on the go with D., trying to teach him how to ride a bike, or play tennis, or ball. From the moment I told him that we were going to try to heal his grandson’s little body, he jumped on board along with my mom. They never questioned; they never judged. They just hoped and supported us – morally and financially – through prayers and love. During the past 4 years, I have noticed the sadness and desperation in Aki Mac’s eyes even though he has always tried to hide it.

As the bus pulls into the driveway, Aki Mac picks up his pace; he is almost running towards the bus. D is impatiently trying to open its door. He is shaking with excitement, jumping, his eyes are dancing with joy, his soul is smiling and I can see his face glowing. The door finally opens and he jumps in Aki Mac’s arms. D keeps hugging him and looking at him…and hugging and looking some more. He wants to make sure he is not dreaming. The bond between them is exceptional, I can’t explain it. It is real and strong, and today, more than ever, it is there.

My mother and I are standing further back in awe of the scene that is unfolding in front of our eyes. Suddenly, D realizes his Nana is there too. He decides to let go of Aki Mac for just a moment and runs towards my mother, throwing himself in her arms.

My parents are blown away by all his changes, by his eye contact, by his questions. They look at me, proud and happy to see that all that we do is not in vain. At that moment, I pray selfishly that this is going to be the preview of our 10 days together. “Please, please God, let him stay well while they are here, let them see him in his best behavior and mood”. I didn’t want them to see the ugly, the screaming, the tantrums. What I didn’t realize is that the full moon was just around the corner, waiting to show its ugly face.

The full moon has the worst effect on my child. Every month, for about five days to a week, it is almost as if I have a different child in the house. He will go from being engaged, playful, social and smiling, to angry, aggressive, unpredictable and moody. This time, there is no escaping; my parents witness the sudden, almost hard to believe change in behavior in our son. It’s almost as if God and the universe had planned all of this to happen so they could embark on our rollercoaster ride for the week. All of the sudden, as if they have been hit with a hammer over their heads, my parents realize this is what we go through.

All.

Year.

Long.

As my dad approaches me, I can see that he has an overwhelming urge to cry, a sad melancholy tightens around his heart. Just like most grandparents, he too had his dreams. Grandparenting is much different from parenthood. The daily stress, the decision making, the financial problems and other strains of parenthood are not present in grandparenting. Once our parents have reached that remarkable stage, they are allowed to savor in all the joy of being with grandchildren. Grandparents have dreams of teaching them to navigate the world and taking them on wild adventures. My dad had these dreams, too, and they were stolen from him. Aki Mac does not get to savor all those joys.

I watch him sob and I feel helpless. It is as though, at this very moment, nothing I could say could help. Suddenly, it hits me: our parents have a double burden. They worry about our kids, their futures, their health, and what will become of them when we are all gone. Then they worry about us, their own children, their own flesh and blood, for whom they want nothing but the very best. Aki Mac wonders how we have done it so far. How have we coped with all of it emotionally and physically? Aki Mac wishes he could take away my pain, and some of the weight that I have been carrying on my shoulders.

A generation of Aki Macs is as much if not more affected by this epidemic as we, the parents, are. Some have rolled up their sleeves and stood by their children’s side, while others may have found it too difficult to cope with. Whatever their position, I know they are all hurting for us and for our children.

And then, just like that, as if he did not want to let them leave all worried and sad, D reemerged the day before their departure just as if nothing had happened all week.

The full moon is behind us. He is back. He is funny, smiling, singing all the cool songs he knows. He is asking my dad questions. They go to the park together; they read books and play ball (or at least they try). I know now that my parents will go home with much hope and gratitude: it is not all bad. There is some good, a lot of good actually. We just have to keep working harder and harder. We just have to strongly believe that he will get better, and get better he will.

As his departure approaches, I can see my son holding on to the hand of his Aki Mac. He doesn’t want him to leave. He doesn’t know how to express it. And then, as he realizes that he has no choice but to let go of his hand, tears begin to flow. “Aki Mac, please don’t go, I want you to stay, don’t go on the plane…please…,” as inconsolable tears fall down his precious little face. His sadness is palpable and heavier by the minute. As we try to pull them away from each other, he attempts one last time to convince him: “please, come to the beach with us so we can feed the birds and play in the waves.”

I am sobbing… we all are. But my husband’s eyes lock into mine and I know his are crying happy tears, too. For the first time, my son is able to express his sadness. Right now, I enjoy the magic of this victory, knowing that I’ll be able to cry my tears of sadness later.

And as for my dad, for both my parents, they leave with their hearts full of hope. They bring back with them the dream that perhaps next time around, they will find him fully recovered….♥

~Prima

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37 Responses to When Grandparents of Special-Needs Kids Come To Visit, Magic Happens…

  1. Jennifer Power says:

    Perfect. Is all I can say. And thank you.

  2. Julie says:

    I’m always envious of the grandparent factor. Sophia’s grandparents are huge supporters of Mama Mac! They connect with her because they are all huge PBS followers and have a connection to her father. Sophia the only grandchild not so much. We are lucky if we see them once a year. Why? I don’t know.

  3. Donna Powers says:

    Thank you for this post. When I became a grandmother I worried about whether or not my son and his wife would vaccinate. They didn’t. Our almost 5 year old granddaughter has a recently diagnosed hereditary blood disorder and I am grateful every conscious moment that they chose not to vaccinate, despite so much pressure, mostly from peers. There will be more pressure to vaccinate because of the threat of ‘infectious disease’ and its effect on the RBC’s.
    The desire as a parent to keep your children healthy and your grandchildren is SO strong…no matter what age.
    As grandparents now, we are behind the future generations and you 100%. Your parents are remarkable people and I understand how they must feel…for you and for your child/children. We would die or give up our lives for our grand daughter. If my husband was given the chance, he would bank enough blood cells for her whole life time. (Helps to have the same blood type)
    And as an added bonus, my granddaughter is blessed to have both a great grandmother and great grandfather who are lively and involved.
    Families can be so important in so many ways. Because of this post, I will take time today to thank my parents again for being there for me, my husband and my adult kids and now our granddaughter.
    Bless you and sending love as you move through the hard times to the times of celebration. You are making a difference in the world.
    donna

    • Prima says:

      Donna, Wow! THANK YOU for your kind and beautiful words. God bless you , your husband and your parents for making a difference in your children’s lives. We are ALL making a difference. <3<3

  4. Princess TMR says:

    Beautiful, sweetie. *tears*

    To full recovery!!!!

  5. Blaze says:

    What an amazing post, and English is not even your first language! Incredible! I love your Dad and I know exactly what you mean, our parents worry and grieve for not only our children, but us, too. Double duty. xoxoox

  6. Mamacita says:

    This was a truly amazing post full of many emotions. Thank you for sharing your beautiful story.

    ~Mamacita

  7. KFuller says:

    Two days in a row sobbing while reading these posts. You helped me visualize what it would have been like had my father lived! Thank you. And thank you for sharing how it should be but is so rare in our families!

  8. Marco says:

    My father once begged me in tears to fix David before he died. He turned 79 in February. My son is the ONLY male son to a male son out of ten siblings in my father’s family.
    In other words the family name is in the hands of a little six year old boy with autism.
    No pressure.

  9. Guilded Thinker says:

    *tears* just beautiful, Prima!

  10. Willsmom says:

    Beautiful story…love this

  11. Ana Maria Abba says:

    almost bawling today. I was in a public place so had to stay somewhat strong.

    Wow, what a beautiful relationship your son has with his grandfather 🙂 I was especially sad because my son will never now his grandfathers because they both passed a while back.

    I do hope next visit will be just fun and worry free.

    Thanks so much for sharing. You have a gift for expression.

    Ana 🙂

  12. jan houston says:

    tears. may your recovery come swiftly and be complete.

  13. Goddess says:

    Truly Beautiful. Love you Prima.

  14. Danette Locke says:

    Wow, I never thought about from the grandparents point of view – gives a whole new perspective. Your parents sound wonderful & your little guy too:)

  15. Jill says:

    Sooo touching, very teary-eyed here! I can so relate. Thanks so much for a very thoughtful and well written post 🙂

  16. Sugah says:

    *tears* Wish my parents cared this much.

    MUAH!

    P.S. It’s parasites.

    • Prima Tmr says:

      Love you Sugah. I could not do it without you or the rest of the gang ♥. We are going to wipe them out them aren’t we ;-)!!! Mouahhhh!!

  17. Robin L. says:

    Boy…that one is a tear jerker and I feel it as I live close to my Mom who is my #1 supporter and care-giver for my son. I wish your parents could be closer to you too. I only saw my mom cry once on this journey and I will never forget it…it was a saddness that she was worried for me and how it would all work out! Of all things…when our world is so unsure and sad, our parents if we are the lucky ones can be there for our children. I worry sometimes that my child and his bond with grandma is too strong and close — he should have more classes, playdates, groups, etc. Not just hanging out with my mom. But, I have learned to let go and hope it all works out in the stars or the moon — for when she is gone from his and my life…we will need a new routine and path. We will cross that bridge when we get there. I am glad that your parents are in your life and for those without family…find others. There are so many kind and lonely people out there who would like to take your burden for awhile (I have found many kind people at the YMCA). It’s hard for people to ask us what we need help with…and it’s extra hard for us to ask for help.
    Thanks for the post. I will stop crying and worrying now and go take a shower! 🙂
    p.s. The irony of Natalie Merchant’s amazing song is that…our lives are like a circus…don’t you agree! lol…

  18. Shiri says:

    Love this post! So true about grandparents having a double burden as they watch our struggle too.

  19. Carmen Palacio says:

    What a story!!! THIS is your inspiration to keep it going, when you are exhausted, to keep believing when you have “that doubt”, to keep sharing the story when you may “think for a moment” the person does not want to hear it. I am my child’s messenger of what happened to him. The story is powerful too and I tell his story often. We never know the domino effect from what others learn from us…

    • Prima Tmr says:

      Never stop telling your story. You may not always know it but you ARE changing the life of others, one child at a time! xoxo

  20. Cristina says:

    Wow.

  21. Robyn says:

    I understand what you mean with being happy that he could express his sadness. My daughter hurt her toe last week and through all my concern over her sobbing tears and pain, I couldn’t help but think, wow, she’s actually feeling it! I don’t know how many times in the past we saw her bonk her knee or fall off a bed and she didn’t make a peep. Its bitter sweet.

    • Prima Tmr says:

      It really is…But it is great news!!!!! My son started telling us he is in pain about a year ago, and i kept feeling the same way at first….But i still always try to focus on the positive knowing how far we have come…..I wish nothing but the same for you guys:)!

  22. Hanna says:

    Oooh boy. This hits home for me as well. My son is also a raging psycho when the moon is full. One time, he underwent a speech assessment during a full moon cycle and it was a complete and utter disaster. Did you know that full moon moodiness can be a red-flag for internal parasites? My son DEFINITELY has parasites (I’ve seen them) but luckily he’s healing and getting stronger through Heilkunst homeopathy.
    Thanks for sharing.

    • Prima Tmr says:

      Yes, I know now that it is parasites related, but up until recently, i had no clue….We are treating and hopefully, as he gets better, the behavior will improve as well. Thank you!

  23. Buzz says:

    Bawling my eyes out!!! I hop he is recovered the next time too!!!
    xoxox

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