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A Birth Grandmother's Role


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Mari,

I've missed you lately...but I've been hit or miss as well. Our children share the seizure episodes & we've had some rough patches these past months as well with Hayden's seizure control.

I hope your daughter is doing better now & you continue on your path of healing as well.

I look forward to read more of your journey when the time is right for you.

All my best, Amy

Amy,

Thank you, my daughter is doing better, returns to her dr. in a few weeks for more lab work and follow up. I hope Hayden is also doing better. Do you have any wise insight for me, how do you handle it? What type of seizures are they? How do they affect Hayden prior/after? How often do they occur?

I really don't know how parents of children w/epilepsy do it, I am thinking like anything else, one learns from them and how to deal with obstacles. It just really took a toll on my daughter for a few weeks afterwards,she was quiet, more pensive,scared,her emotions were a roller coaster, thinking her tumor had returned,she lost motivation for a while. It took her and us some time to get to a somewhat normal or new normal place..But I think we will always have that in the back of our mind or maybe more like in the forefront, especially with the results of her EEG. Example..Her dad was picking her up from school Monday and she was delayed due to her class running a little late, he had started to worry even though it was only a few minutes..he text her and left her a voice mail, but since she was still in class couldn't reply, as soon as she got out she called him and told him she was on her way.. He told me that as soon as she got in the car a fire truck (first responders besides the police for her at school when she had the latest seizure) drove by them and pulled into the school, he said he was so grateful a minute before she had gotten in the car, because had she not been sitting right there and had it been a few minutes earlier before he heard from her, he would have parked his car and gone looking for her thinking it might have been for her, his heart had been racing a little. I remember many a day waiting for her after school, sometimes 15 or 20 minutes, nothing crossing my mind other then her staying late in a class or socializing with her friends, now those thoughts have been replaced with : is she ok, did she get turned around.. I guess it is all part of the process, I can only imagine how we will feel once she starts to drive.. May have to get some tranquilizers for my husband and I. I am sure we will survive, it will just be a challenge for a few years or so. :blink:

Any insight or tips you can give me, sure would be appreciated..

Blessings to you and yours,

Mari

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Mari,

I've missed you lately...but I've been hit or miss as well. Our children share the seizure episodes & we've had some rough patches these past months as well with Hayden's seizure control.

I hope your daughter is doing better now & you continue on your path of healing as well.

I look forward to read more of your journey when the time is right for you.

All my best, Amy

Amy,

Thank you, my daughter is doing better, returns to her dr. in a few weeks for more lab work and follow up. I hope Hayden is also doing better. Do you have any wise insight for me, how do you handle it? What type of seizures are they? How do they affect Hayden prior/after? How often do they occur?

I really don't know how parents of children w/epilepsy do it, I am thinking like anything else, one learns from them and how to deal with obstacles. It just really took a toll on my daughter for a few weeks afterwards,she was quiet, more pensive,scared,her emotions were a roller coaster, thinking her tumor had returned,she lost motivation for a while. It took her and us some time to get to a somewhat normal or new normal place..But I think we will always have that in the back of our mind or maybe more like in the forefront, especially with the results of her EEG. Example..Her dad was picking her up from school Monday and she was delayed due to her class running a little late, he had started to worry even though it was only a few minutes..he text her and left her a voice mail, but since she was still in class couldn't reply, as soon as she got out she called him and told him she was on her way.. He told me that as soon as she got in the car a fire truck (first responders besides the police for her at school when she had the latest seizure) drove by them and pulled into the school, he said he was so grateful a minute before she had gotten in the car, because had she not been sitting right there and had it been a few minutes earlier before he heard from her, he would have parked his car and gone looking for her thinking it might have been for her, his heart had been racing a little. I remember many a day waiting for her after school, sometimes 15 or 20 minutes, nothing crossing my mind other then her staying late in a class or socializing with her friends, now those thoughts have been replaced with : is she ok, did she get turned around.. I guess it is all part of the process, I can only imagine how we will feel once she starts to drive.. May have to get some tranquilizers for my husband and I. I am sure we will survive, it will just be a challenge for a few years or so. :blink:

Any insight or tips you can give me, sure would be appreciated..

Blessings to you and yours,

Mari

Mari,

I hope to be able to email/PM you tonight.

Hoping your day has gone well.

xoxo, Amy

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Mari,

I hope you got the PM I sent last night.

Trust you are doing well.

xoxo, Amy

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Mari,

I hope you got the PM I sent last night.

Trust you are doing well.

xoxo, Amy

Hi Amy,

Yes, received PM,,you should have my reponse as I type this.. sorry on delay, having computer issues..need to take my lap top in for service..darn thing is slower then the pet turtle I had as a teen :lol: and keeps locking up on me.. but, finally was able to send.

Keeping your little one in my prayers.. Have a wonderful weekend

Blessings

Mari

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  • 2 weeks later...

Wishing all grandparents a blessed grandparents day...To all bio/first grandparents, may you have peace in your heart and feel the embrace of God's love surrounding you on this special day. You are all in my thoughts and prayers..

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Mari

The pictures are so special....Thanks for sharing!

Hugs

Heidi

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We wouldn't be able to survive with out our parents, aka kids grandparents...it takes a small tribe these days to ensure our kids are raised well.

Mari, thanks for being a light in so many ways to your family & your granddaughter's family.

Keep pressing forward!

xoxo, Amy

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Thank you ladies…love seeing our little angel girl and spoiling her when we can...but nothing warms my husband’s and my heart more then seeing our daughter light up when she spends time with her. We are truly blessed, my granddaughter certainly has her tribe that love her and whom she is the center of not only our world but her parents’ world.

Would like to ask for continued prayers for my daughter..If you don’t mind, please throw one in there for me; it’s been a bit stressful for me due to my daughter having another little set back with her health this past week…. :(

May you all have a wonderful and blessed week

Mari

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Mari,

Lifting prayers for you, your daughter and your entire family. Praying for healing, strength, and good health.

Blessings,

Tracey

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Dear Mari, I will add your daughter and your whole family to my prayers. Sorry to hear of the set back. Thank you for sharing the pictures - they are heart warming!

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Thank you ladies for your prayers... My daughter has had two seizures in less then a week..Even though she was put back on medication with her seizure at the end of June, on Friday it was doubled and yesterday it was increased some more.. She does go for a follow up today and they will be checking her medication level, hopefully they can find the right dosage or might have to change it all together..

All I know right now is that these episodes have been frightening,have her scared and nervous as they do her dad and I.. So the prayers are all we can ask for and for God to continue keeping her safe and guide her doctors in her road to healing.

Once again thank you to all for being there for us during this time of nerve racking & heart racing uncertainty...

Reflection of Pictures

A sparkling diamond (Sloane)

Being surrounded by just a few of natures wondrous elements

Each with it's own beauty and uniqueness

That will help shape her into the unique brilliant cut of a sparkling gem

That she will always be to each one of us

Edited by 1st x grandma
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Mari,

I've been away from the forum for over a week now. Checking just briefly....so sorry to read that your daughter has had a reoccurance of seizure activtiy. It stinks!

Praying with our forum community that the weekend will provide some respite of seizures & allow adjustment to new medications.

I am beginning to wonder if the change in the seasons isn't the reason...our Hayden is continuing to have issues at night. Feel free to email me at my home address.

Much love...Amy

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Mari,

I've been away from the forum for over a week now. Checking just briefly....so sorry to read that your daughter has had a reoccurance of seizure activtiy. It stinks!

Praying with our forum community that the weekend will provide some respite of seizures & allow adjustment to new medications.

I am beginning to wonder if the change in the seasons isn't the reason...our Hayden is continuing to have issues at night. Feel free to email me at my home address.

Much love...Amy

Thank you Amy..have sent you an email..

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Much love coming your way Mari and prayers for your family. :) ... if I knew how I'd post hearts here..... :)

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  • 2 weeks later...

Much love coming your way Mari and prayers for your family. :) ... if I knew how I'd post hearts here..... :)

Thank you Suzi, we have had one heck of a rollercoaster ride this past month.. but not letting the jerks throw us off the track, they are though making us hold on a tad bit tighter! :o

Your little ones are getting so big..beautiful kiddos.. Hope you are all doing well...

Blessings,

Mari

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Thank you Suzi, we have had one heck of a rollercoaster ride this past month.. but not letting the jerks throw us off the track, they are though making us hold on a tad bit tighter! :o

Your little ones are getting so big..beautiful kiddos.. Hope you are all doing well...

Blessings,

Mari

Sometimes it is the jerks that wake us up make us focus on what is important too.....hang on the ride is always changing...no wonder I don't like roller coasters any more wink.gif.

Blessings, Amy

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Amy, your right,,those jerks wake us up and make us appreciate life and loved ones.. they are also reminding me that I am getting too darn old.. :blink:

roller-coasters were my favorite ride at amusement parks.. The thrill of the dips, the adrenaline pumping from the anticipation of the drop, the excitement, the feeling of freedom while at the very top, holding your breath and preparing yourself for what came next, yet the heart's fast palpitations with the sharp curves leaving you breathless..wow what a rush...front seat was the magic place.. Now I will gladly take a back seat and hang on, as I travel on the ride of this journey, patiently waiting for it to slow down enough to let me catch my breath once more and be able to say, wow what a ride, but let me plant my feet on solid ground.. :lol:

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  • 1 month later...

Hope things are going better Mari.

May this day....your birthday, be a very good day.

Celebrate in style!!!

Amy

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Happy birthday, Mari!!! Love reading your entries on the forum and have learned so much from you. Hope today is a wonderful day full of joy.

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Thank you so much ladies for all the bday wishes....I had a wonderful day, the only thing that would have made it even better would've (is this a word?)been seeing and hugging all my girls.. but I did get a chance to speak with my daughter in Vegas and my grandbaby, which was great..

Hope all of you are doing well, beautiful pictures in the gallery....

Gina, thanks for the heads up..I would hate to think someone was attacking me and force me to mace you.. :o jk I don't carry mace...I would love to meet you, would love to meet many of you in person..maybe one day I will get the chance..

May all of you have a wonderful and blessed weekend..

Much luv

Mari

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How did I miss the birthday of one of my favorite Forum Bloggers......xoxoxoxo Have a very HEATHLY year!

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  • 3 weeks later...

Hello forum family,

Hope everyone had a wonderful Thanksgiving with loved ones. So many beautiful pictures in the gallery and those beautiful babies that arrived around the same time as my grand baby are getting so big. Wow, can’t believe my angel girl is going to be two next month, and this is already her second Christmas. Watching her grow and being a part of her life and a part of her family’s life has been a blessing.

Sorry I have neglected my postings..The last couple years have been a heck of a roller coaster ride and some months have hit harder then others. Although we are doing MUCH better with the adoption portion, some days can still be a little tough. My daughter’s health is what has taken us through some dark storms, still dealing with many of them, but at least with one of the worst ones it looks like FINALLY her doctors have found the right combination of medications to keep her seizures at bay and another two doctors have been added to her already long list of specialist. Her dad has mentioned on occasion he never would have thought that two years later (from her brain surgery) we/she would still be dealing with all we/she has been.

We had to laugh the other day, she said she felt like a drug addict popping 14 pills a day..We have to make sure when we venture out, that we take whatever medication will be due while we are out, sometimes that means even including a snack and water we have to sneak in sometimes (oh well, we do what we gotta do) for her to take them with. The commercial of the credit card that they say, “don’t leave home with out it”, well for her the card is replaced by her pill box. Getting back to the gym is another goal this month, haven’t been in three months, were waiting on her doctors and physical therapist to give her the ok, which we now have.

Even with all these obstacles she is doing well, and even though our calendar has been pretty full with doctor appointments/therapies, she has managed to stay current with school. Next week she will finish up her first semester of college and is already signed up for the spring semester. I couldn’t be prouder or ask for more, which helped us have a wonderful Thanksgiving.

I have been keeping my mind occupied with my jewelry making, and I will actually take part in my first ever Christmas craft event this Saturday. Taking along my elf helpers (daughter and husband), so we will see how it goes.. Anyone in SA or surrounding area who likes to go to these.. The event will be held at St. John Neumann Catholic Church in Live Oak.. from 10am to 4pm,,,,I will be there til 1 or 2, but I am sure there are a lot more talented people with their crafts that will be there..

Well, time to get going..so I hope to be able to get back to the forum on a more regular base.. Wishing everyone a safe holiday season.

Blessing to all

Lov,

Mari

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