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mamapinky0

Amiee. long post

9 years ago

Another thread about meeting people prompted me to start this thread. I'm not sure where to start so I'll start at the beginning.Amiee was born 7/20/96...my beautiful and perfect grandaughter. However she was born with a very rare vascular condition *Parkes-Weber-Syndrome. ( not Sturge Weber or Klippel Trenauny) . Amiee was born with what looks like port wine stains with close to 100% coverage on lower back, buttocks, pelvic area, both legs and feet...this stain ranges from pink to blackish purple. Thru many testings we find Amiee has many many AVM's, she has many missing or malformed capillaries meaning the blood has to shunt directly from the veins and arteries causing a fast flow of blood..your heart is not designed to keep up with such a fast flow of blood indefinitenly. Currently we know Amiee has vascular malformations in the floor of her left pelvis, in her colon, anus, both kidneys, bladder, uterus, and wrapped around the sides and front of her lower spine. This strange condition is like a double edge sword as far as her blood goes she can clot today or next week bleed. Her insides literally look like spaghitti noodles tangled up. Pain is her constant companion. My husband *Mike* and I were in the delivery room while this grandaughter of ours was born...we took one look at her and honestly I felt my heart tighten with such unbelivable love...her father walked out of the room, her mother turned away and said *give her to her grandparents* my mind was screaming** WHAT ARE YOU DOING** OMG, Mike and I left the hospital days later with the love of my life....my Daughter.

We've had Amiee to Boston Childrens hospital, The Cleveland Clinic, The Mayo, Hersheys Medical center, Pittsburgh Childrens hospital where she currently sees 9 different departments of speciality care. Amiee can not be fixed, there's too many vascular anomalies. All the doctors can tell us is she will eventually bleed out internally as the walls of her arteries become thinner and thinner or her heart will just become to tired.

Amiee is strong, her self confidence is astounding..she has never let Parkes-Weber define who she is. She was the lead model for Rue21 in our local mall for 7 years often strutting her stuff in shorts or other clothing that she loved never even thinking others would see her legs she didn't think about it because she didn't care. Oh how she loved those modeling times, she would rest with her legs elevated for hours before hand, saving her strength, keeping the swelling down in legs that could swell horriably, and her poor feet that no shoe would fit once swollen and she would get out on the cat walk looking to all the world as though it was easy...see Amiee can only walk 4to 7 minutes on a good day...but she forgot about her pain just as she forgot about the port wine stains and carried on.

I remember how excited she was when she hit 9'th grade and could finially go to the school dances, she rode a wheelchair accessable van to school and ask another girl with no legs can you go to the dance with me..this other girl said no I cant I'm handicapped...that to this day has left a mark on Amiees heart as she says no one is handicapped unless they allow themselves to be...

Friends....there are none....the girls never wanted to befriend a girl with legs like Amiees expecially when parents drilled it into their children at a young age** don't get near her, don't touch her** Oh I cried a trillion tears, but never in front of Amiee. Once in kindergarden she was invited to a halloween birthday party the entire class was invited...it was held in a child's home. I was ask by the mother after we arrived if I could pick Amiee up in 2 hours...leave her...I sat in the driveway...I could see it all as it was outdoors...lots of costumes that had play plastic swords..I watched kids swing them around Amiee not hitting her as all the kids said eww don't touch me...I took my daughter home. I told Amiee those kids were not nice and the next time children are unkind to you you need to tell them ** you are not nice** Amiee responded with Oh no mommy that would be rude.

Amiee approched a boy in school she was in 9'th grade he Kody 10'th...that started a close bond, Amiee had a boyfriend. This boy spent the next 6 years spending many hours a week at my home, they played games, played cards, went to the prom, Kody carried Amiee all over the house...and how many hours he rubbed her poor hurting feet and held her head while she threw up when her pain got away from her...he would sing her to sleep and refuse to leave her side...he would spoon feed her broth, he planted a flower garden for her and called her his tulip. ..never for one moment did he let her suffer alone...6 years...than he walked away...because Amiee would not, was not ready for intimacy.....Amiee told me she understood that he has raging hormones and he could wait no longer....Kody however calls Amiee several times daily and occasionally sends gifts, he is seeing someone now yet continues calling Amiee...so she lost her only ever friend. Lately her aloneness has been troubling me much more...I have to step in and find a way for this wonderful and beautiful girl to meet people. Theres no doubt she will form friendships if she's around others as she's not shy and has a outgoing personality....well I sure did write a book and I thank you if you read all this LOL. I feel better tonight maybe because I vented.

Comments (40)

  • 9 years ago

    Amiee and Kody at the prom...sorry it came out wrong direction

  • 9 years ago

    Amiee picking up my bad habits Haha

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  • 9 years ago

    She is beautiful! She's blessed to have her grandparents step up and become her parents! You are special Mamapinky!

    Is there anywhere she would be able to volunteer? I know you said she uses a wheelchair but I wonder if she could volunteer at an animal shelter? Often they need people to play with cats. If she'd be able to walk a dog while in her chair that would be awesome as well.

    I volunteered for years at my local humane society and made some of the best friends of my life there. And countless hours of joy spent helping brighten a shelter dog's life.

    Good luck and God bless you both!

    mamapinky0 thanked share_oh
  • 9 years ago
    last modified: 9 years ago

    She is absolutely gorgeous! Her spirit and tenacity are amazing. How old is she now? Opps see her birthday. Do you have a nextdoor forum for your neighborhood? If so join it and possibly find some similar aged young people near you that would be interested in some get togethers. Hobbies are a great way to make friends with the same hobbies. I just know there are others that would appreciate her sweet disposition and want to share a friendship. Does she have email friends? Like the pen pals we had back in the dark ages lol. That would be a good option.

    mamapinky0 thanked ravencajun Zone 8b TX
  • 9 years ago

    You've raised a beautiful daughter. If only more people had her wonderful attitude. She's truly a treasure.


    mamapinky0 thanked pudgeder
  • 9 years ago

    Hey what about fantasy gardens if she likes fairy stuff. Little fairy sized container gardens. She could make them, sell them at flea markets and farmers markets and find others that have the same likes. Google fairy gardens. Over on the garden junk forum there have been several over the years that posted pictures of their gardens. It would give her a fun hobby and a great way to meet people.

    mamapinky0 thanked ravencajun Zone 8b TX
  • mamapinky0 thanked ravencajun Zone 8b TX
  • 9 years ago
    last modified: 9 years ago

    Im not a regular on the KT forum, but I stumbled across this and I just had to comment. Aimee's and your story both broke my heart and inspired me. I wish I could just hug you both. I know I will pray for you.

    Perhaps Aimee could join a writers group somewhere nearby? It's an excellent way to meet people and if she has even a slight inclination to write, please encourage her, her story, perspective and attitude could make for a sublime book.

    A church youth group is another option too. I can't help but be certain that there are many who would love to be her friend, if they just had a chance to meet her. Honestly, I'd like to be her friend, but that's probably too creepy. Lol.

    mamapinky0 thanked Tara
  • 9 years ago

    She is truly a beauty..inside and out. When I started reading this, I began to cry and

    felt great sadness. When I finished, the tears are still coming, but the sadness is not.

    I feel such joy that this beautiful girl was raised with such love and understanding

    and joy at just having her in your World. You are blessed...and so is she. God Bless

    you for being the true person you are. Hugs and a prayer to continue to keep you

    safe, happy and loved. Thank you for sharing this great love.

    mamapinky0 thanked Uptown Gal
  • 9 years ago

    Amiee is so blessed to have you looking out for her. She's a beautifuI girl!

    I remember turning away male "friends" when I was young. I wanted to go to college, not start a family. Does she have hobbies? There are clubs for all the people with hobbies. Quilting clubs? Online gaming clubs? Chess clubs?

    Maybe a part time job would get her out and about? Someone suggested volunteer work.

    mamapinky0 thanked User
  • 9 years ago
    last modified: 9 years ago

    She is a beautiful girl and brought tears to my eyes! She is so lucky to have you...bless you. Is there a children's hospital nearby where she could visit the patients.? what an ispiration she would be!

    mamapinky0 thanked marylmi
  • 9 years ago

    What a lovely girl, she is. What is Amiee interested in, mamapinky?

    Maybe you could start by narrowing down her interests to the top three and then search out groups or clubs that specialize in her interests.

    mamapinky0 thanked Rosie
  • 9 years ago
    last modified: 9 years ago

    Thank you for sharing Amiee story. I had some of it pieced together as you have shared a few details about your daughter.

    You are amazing. You also take care of the two young boys.

    I wish that there were support groups for people in a similar situation. We discussed ideas in the other thread that will hopefully get you started.

    mamapinky0 thanked eld6161
  • 9 years ago

    You have & your husband have done fantastic raising her. She has a beautiful spirit!

    mamapinky0 thanked janey_alabama
  • 9 years ago

    She is beautiful.

    mamapinky0 thanked jkayd_il5
  • 9 years ago

    A great source of community is your local library. Aimee could volunteer to read to the little ones. She could join a book discussion group. My library makes a room available for a knitters/crocheters group to meet. I'm sure one of the local churches has a youth group. While kids will be kids, I've found that the ones who seek youth groups at religious institutions have kinder hearts. I cannot believe that there isn't one young woman with whom Aimee hasn't established a bond through school. While mobs of kids hanging out at the mall sounds enticing, the reality is it only takes one girl to sit and giggle with and try the newest makeup with in her room is all that she really needs.

    mamapinky0 thanked clearwaters
  • 9 years ago

    You are a treasure Mamapinky. Words fail me.

    mamapinky0 thanked Rita / Bring Back Sophie 4 Real
  • 9 years ago

    Is she a member of any online forums or support groups? Those can turn into real life,lasting friendships,as evidenced by some of the people here.

    mamapinky0 thanked amylou321
  • 9 years ago

    I can hardly type because of the tears in my eyes. She is not only beautiful on the outside, she is beautiful on the inside......and you are, too!

    mamapinky0 thanked Georgysmom
  • 9 years ago

    What a beautiful story, and a very beautiful, strong girl. She has an incredible outlook on life. Do your daughter and husband even see her, or she want to see them?? You are one in a million, Mama, your husband too. I think you look after two grandsons too, don't you?


    mamapinky0 thanked Jasdip
  • 9 years ago

    I'm crying too. What a beautiful girl she is and obviously inside as well as out. I know where she got that from!

    mamapinky0 thanked Janie
  • 9 years ago

    What a story and what strong women you both are. So inspirational! I wish the very best for Aimee and your family.

    mamapinky0 thanked Bluebell66
  • 9 years ago

    It seems to me that Aimee (whose outer and inner beauty match) would be an amazing blessing to children who have medical issues as well. Is it possible for Aimee to find a hospital where she could work with children and young people, reading or helping with a playgroup or such? All sorts of people volunteer at hospitals, so she may be able to meet like-minded individuals there. Hospital chaplains might be a good resource to see where a need exists that Aimee could meet.

    mamapinky0 thanked Rita / Bring Back Sophie 4 Real
  • 9 years ago

    She's so cute, and photogenic! And more importantly, a good person.

    Regarding her alone-ness, does she get out of the house much? How is her physical stamina? If she needs or would appreciate a physically low-key environment, maybe look into volunteering at a retirement home or nursing home. So many people would welcome someone to listen to their stories, read to them, help them color, lightly clean their room, etc.

    Loving a child who is going through a rough patch can be harder than bearing it yourself. Take care of yourself too.

    mamapinky0 thanked User
  • 9 years ago

    I Thank everyone of you for your kindness, I was about in tears myself reading your bitter sweet empathy. And so many great ideas to explore. Thank You. As many of you know I am a regular in the laundry forum, and there have been times I went off topic and talked about my life...I was very kindly reminded thru email by another member whom i greatly respect that its a laundry forum and not the best place to discuss personal things..I'm glad I found the KT with all you good folks...I found a place to share my ups and downs..

    Sometimes its the simple common sense things that get lost to me in my crazy world. As I read some of your suggestions I had one of those **wow I could have had a v8** LOL. I will be exploring your suggestions which all sound great. Some of the issues are Amiees stamina, fatique is problematic and seems the older she gets the worse the fatique, but the doctors warned us of this years ago. And dang it they also warned us that puberty would bring on a major problems, so wwouldn't you know she went into precocious puberty at age 7... weight gain has been an ongoing problem although she's up to I think its 88 pounds now, most she's ever weighed, I hope it stays on this time as her history is usually gain 2 pounds lose 4 and she eats omg this girl can eat. Its nothing for me to fix her a huge plate of pasta at 3am, she eats off and on all night LOL. Cardio says its because her heart rate never goes below 145 even at rest.

    Amiee does interact in the hemo/chemo department at Pittsburgh Children's hospital about once a month, she reads to the kids, plays Disney Trivia and has had a ton of tea parties. Once she dressed up as Snow White and read the book to the kids.. She has a special interest in children, but never really wanted a career dealing with kids lol..for many yesrs she wanted to be a OB/Gyn. We always supported her her dream, when she started her senior year she cried and told me she just can't do it..she felt med school would be to draining and she would not be able to keep up...cute story...when my 8 year old grandson was born Amiee and I were in delivery, the doctor talked to Amiees PCP and they pulled some strings to allow Amiee in as she was 12, but what Amiee didn't know was the surprise in store for her...she was secretely dressed as a doctor, and stood at the OB's side during exams of mom to be..once it was time to deliver the doctor stood directly behind Amiee and ask her if she would help bring this baby into the world...Amiees dream of being a OB came true.

    Well I could just go on and on but I'll stop Haha...Thank you all very much for listening to me ramble and for all your grest suggestions. (((HUGS)))

  • 9 years ago

    Wow MamaPinky--- She has faced many obstacles with bravery and she sounds so sweet and determined. I do not really understand why the lack of friends to be so total..... I know there are many, many mean kids, but I have witnessed numerous examples of challenged/autistic/"different" children at our (public) elementary school--our school has buddy programs, mainstream opportunities, and all kinds of occasions where accommodations are made to help out many differently-abled kids. I know that many/most/all? of these surprisingly different children do indeed have friends, parties, invitations, etc. Perhaps I don't know the real story there, but I have not ever heard of a child unincluded because of a difference (not saying there aren't any, of course, I am sure there are....) ... and our school is the district-designated location for many of those kids.

    Perhaps she is interested in reaching out to children with her situation? Or schools? Or perhaps she has other ambitions, it sounds like she has all the capability she needs to accomplish so many things!!!

    All I can say is, that there are many warm-hearted folks out there, and the world is not off limits for her. Hugs from me, too., for you and for her.

    mamapinky0 thanked Mrs. S
  • 9 years ago
    last modified: 9 years ago

    I am struck by what a wonderful human her boyfriend Kody of 6yrs was/is.

    It is very sad that her parents rejected her. Are the grands you babysit her brothers?

    She sounds like a very lovely girl.

    mamapinky0 thanked tjkeen
  • 9 years ago

    What a true treasure she is! You are both so lucky to have each other. You are both/all quite amazing and inspiring.

    mamapinky0 thanked FlamingO in AR
  • 9 years ago

    I really admire that you stepped up to make Aimee your own and I am terrified for her future.

    I wish I had some ideas as good as the ones already mentioned for getting her out and involved in something.

    mamapinky0 thanked PKponder TX Z7B
  • 9 years ago

    Aimee is a beautiful young woman with a beautiful and kind heart. I'm disheartened by hearing that ALL the kids have shunned her. It seems these days the kids embrace differences in other kids and try to include them or at least are nice to them (well, maybe not all the kids are nice all the time). At least that's what my HS-age grandkids tell me. Congrats to you and your husband in raising and caring for Aimee to be such a wonderful girl.

    Ditto the suggestions for volunteering a few hours somewhere. Maybe the local library? Also recommend some young adult groups via a church where the kids have a chance to interact and just be themselves and watch movies, talk, etc. Has she considered furthering her studies online?

    mamapinky0 thanked OutsidePlaying
  • 9 years ago

    I really don't have much to add to what's been said here-when I saw the photo of Aimee I couldn't stop saying omg she is BEAUTIFUL. (duh). And, Mamapinky you truly are a most special woman.

    mamapinky0 thanked User
  • 9 years ago

    I never read long posts. I open them up see a book, then close it. This one I read from start to finish. What wonderful parents you are! Terrific grandparents!!! I'm so glad Aimee has you in her life. She sounds like a beautiful young lady who was raised not to feel sorry for herself. It must break your heart that kids treat her that way. What comes around goes around. She will find that right person.

    mamapinky0 thanked User
  • 9 years ago

    Like Debby, I usually avoid long posts. And Lyme has made it difficult to read long paragraphs. But I'm glad I read this one. Lovely girl, wonderful grandparents. Many good suggestions above. Thank you for sharing Aimee with us.

    mamapinky0 thanked Alisande
  • 9 years ago

    Of course Aimee is amazing, she modeled herself after YOU!!!! You've been given lots of ideas and I will just say "you are one amazing woman!!!!!". I will pray and ask for a new friend to come in to Aimee's life and make it soon. lol. Faith and fun.

    mamapinky0 thanked Yayagal
  • 9 years ago

    I'm sorry about such mean-spirited kids; you would think in this day and age parents would pass on compassion and kindness, not hurtful actions and attitudes. And I'm sorry her bf couldn't "wait." She sounds like a truly wonderful girl and I hope she finds some good friends (great suggestions above,) very soon. Thank you for posting about your beautiful girl.

    mamapinky0 thanked sjerin
  • 9 years ago

    She is beautiful and blessed to have you!

    mamapinky0 thanked hooked123
  • 9 years ago

    She is lucky to have you as a grandmother. Raising a child is such hard work and many would not take on that responsibly once their kids are grown.

    Wishing good things for the very lovely Amiee.

    mamapinky0 thanked Bobbi
  • 9 years ago
    last modified: 9 years ago

    What a lucky thing for Amiee and you that it was love at first sight. So glad you and your DH are able to walk through life with her. Thank all that is good for you and your DH. I'm glad she was able to have love with her BF even if it couldn't go any further. It sounds as if she has experienced life well.

    I'm curious how is her name pronounced. I say Ah mee eye but think I'm wrong.

    Again thanks be for what you do.

  • 9 years ago

    She ended up with the perfect parents for her after all! her story is inspiring! Amazing girl! See if there are any volunteering opportunities that might work with her physical limitations by looking online at volunteer match. Maybe answering phones or sitting at a receptionist desk for an organization could work. Joining a book club or how about taking her to bingo? Churches might have some young adult activities. Many have websites now so you can check on those. I'm not really sure, but hospitals seem to have volunteers running the visitor desk. She might like that atmosphere since her dream was to be an MD. Not sure if being there would be risky health-wise? Micheals offers craft , cake decorating and sewing classes.