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May I tell you how much I admire you, your daughter, and the rest of your family. Heavenly Father doesn't send special needs children to just anyone. He sends them to the families that are strong, loving, and have the ability to endure many hardships. Your story is truly amazing. Avery is so fortunate to have such a loving family. I truly admire your example of unconditional Christ like love. Thanks for sharing such a tender story with us.
by toogie
17 Aug 2017
First, let me say Welcome to Cute. Then I want to say, most of the Cuties have seen Avery grow up on Cute. She's their honorary Cutie, so to speak. (She always likes to hear my machines running, as I make things.) So it was only right, to let everyone know about what was going on with her. We feel that we are blessed to have Avery. She may not can see, but you can see the love in her eyes. She is such an easy going girl.
115Dear sweet lady do you know how awesome your story of your lovely Avery is. How beautiful she is and how love has brought her so far. I congratulate you ALL. God is the miracle worker and he move by love. He loves Avery, but he loves all of you too, because your love & care is bringing her through. May God keep pouring blessings into your lives!!
by toogie
16 Aug 2017
Thank you for enjoying Avery's story. She is a miracle already and we hope to see God move more in her life. The staff are excited to work with her.
7628Toogie, I don't know how I missed this post! But so glad to read it now! Maybe God just wanted you to be assured & supported for days instead of all of us on the same day! We HAVE been missing you...but totally understand why you were so busy. Praying for that sweet little girl and I know you & your family have done the right thing.
by toogie
16 Aug 2017
You have come at a good day for me, so good thing you missed it earlier. Mom said yesterday when she went in, all the children were watching a movie together. But mom was watching Avery, as she approached, she saw Avery turn her head sideways, listening to mom's footsteps and got her smile on. She may not see but her hearing is excellent. She not only recognizes voices, but she knows her mom's footsteps!-lol
35675Dear Toogie, I have just seen this and wish I could have told you earlier that sometimes the hardest things we have to do in the long run work out well. You must be so proud that Avery's parents had the courage and foresight to find this wonderful school for her. My husband had a severely handicapped sister and when the parents passed away the hardest decision was what to do for her. After much soul searching,family confabs etc, on the Doctors advice we found a facility with a special unit for "Adult children" and decided to try it. What a wonderful blessing it was, sister was happier than she had been since she was a little girl, she made friends for the first time in her life, took part in activities we never dreamed she could or would do and generally was too busy for our visits which were unannounced (we wanted to "just check" on how she was doing, being treated,etc.). It sounds much like the school Avery will be going to and you know we will all continue to keep her in our prayers--you , too.
by toogie
16 Aug 2017
Thank you for sharing about your sister-in-law.
Avery has been on a med since a year old to help her sleep. The doctor at this school said he wanted to try to get her off this med as she is kept so busy during the day, with class and therapies, she will be exhausted and should sleep naturally. So if that happens, it will be great. Parents go back on the 30th for the meeting of whether Avery can/will stay on.
by rachap
16 Aug 2017
That news give us a target to pray for-that Avery will thrive and be in the best place for her future. Strength and reassurance for the parents and grands.
8227Your whole family has done all you have been asked to do from the Lord and have each continued to go to the Lord in humble prayer about the path He would have you assist Avery with in her life as well as your own. I am grateful you have felt His guiding hand through these difficult months. we all know that you each would each give all you have within you to give Avery all she is in need of daily, and yet that school sounds fantastic and prepared to give Avery everything she is needing that you each did not always have, though not for the lack of trying to get strong young healthy bodies as well as the additional equipment that Avery's growing body really needs and requires for people to safely move and assist her as needed. One of the first things I thought about after the massively difficult decision that is being worked through, was about how much this will open up their time for the other children and for themselves to actually get needed rest as when dealing with medical as Avery has, you really do not ever actually sleep deep, like one foot on the floor ready for if you hear the breathing issues start, or for the the lack of breathing. Your whole family has lived with those fears for her whole life as well as the pregnancy and these first weeks learning to actually sleep and sleep deep and restful once again, I hope will bring each of you added health and strength to each of you. Heavenly Father has your family in his hands and I too pray that the whole family will grow and expand in ways you could not have even dreamed of achieving. I am also glad you were finally strong enough to share with the Cuties here too. Avery looks to be handling it all very well and with prayer I know the family will be at peace and find new ways to continue to be close during her regular visits. Love seeing the pictures you share with us, Thank You, Pam
by toogie
15 Aug 2017
Pam you are right about living with the fears. I didn't realize how much I seem relieved, that I no longer have that responsibility of having an emergency situation looming, when I tended to her...Avery came home at two months old, but only weighed 3 pounds 14 ounces. Ashley and Avery's dad had to take CPR classes, before she was released. I had been certified because of my job, but I would renew my certification.....
8217Toogie, I have read this story and cried with and for ya'll. Not tears of sadness but of joy! When God closes a door or a window He always opens another. You and your daughter aren't loosing Miss Avery; you are both simply giving her wings to fly. She is so very beautiful and is a testament to the LOVE of the whole family. Be at peace both of you. hugs leaha
by toogie
15 Aug 2017
Leaha, it was so good to have her here Saturday. I wrap her arms around me and reach behind her with mine and get/give our hugs, but I watched her for any 'signs' of change. She was the same laughing at Gus and Nora and when I rocked and sang to Gus, I told her 'Sing Avery' and she did! She makes sounds, but no words, but that's how she always sung. She can follow a few commands but we really don't know how much she can fully understand. She recognizes voices and when we first speak she lets out a sigh and smiles.
by Leaha
15 Aug 2017
Toogie, call me insane if you want to. I firmly believe your beautiful Miss Avery understand more and shows more love than you can imagine. God holds her close in his arms. Hugs to you hope your day wasn't to hard on you. Prayers and blessing are coming your way. All of you are continually in my prayers, even when I am unable to participate on here.
35301The pain you feel is partly "growing pains" - Avery is growing up and things are changing. I think she is a very mature young lady seeing as how she brought her needs to the family and is so happy with her decision. I think you and the family will all find peace and joy as Avery grows in her new environment. And you know, there are no coincidences, perhaps that lady was put in that spot at that time to bring comfort and confidence to you all. Not that you won't miss her EVERY minute, but this sounds like a good move for Avery. Love ya -
by toogie
14 Aug 2017
Thank you very much for your encouragement. It was hard not to go by the school while we were so close today, but we just saw her so I didn't want to interrupt her day.
6122God bless you Avery and Ashley. I feel your broken heart but it will begin heal as the next months go by. You will see how happy Avery is and how her needs are being met. My step-daughter has worked (27years) at a facility similar to what you described. She absolutely loves the residents. I pray Ashley will receive the wonderful care that my step-daughter gives to her residents. I too believe Cuties is like family. You were here for me and I am here for you. Sending love to All, Suzanna
by toogie
14 Aug 2017
Thank you too Suzanna for your words of encouragement and being here for me. The retired nurse said you haven't had christmas until you spend it with these children. She said she was there for 21 Christmases and cried 21 times! Thank your step-daughter for the work/care she gives!-Toogie
18073It must have been very hard for you all ,but it must be the right one for everyone.
Love and hugs to you all, Prayers for you all
Hugs Pam.
by toogie
13 Aug 2017
Thanks, hard to decide but we must put her needs first. Maybe they will be able to help her more than we know how to and have equipment for her.
Thirty day trial and then we will have a meeting again. They will be able to tell us if they can meet her needs or parents can decide to bring her home. Avery and her caregivers need our prayers and so do we, so thank you for continued prayer.
30988dear Toogie I can imagine this was one of the most difficult decissions to take. but Avery will be in a wonderful place where she can have the best medical care . It will be strange in the beginning but It's the best decission for every one. Avery will be loved there too by all. And she will be happy in making new friends . She will love it when you go and visit her.My prayers for you all.
by toogie
13 Aug 2017
Avery was here yesterday! I cooked a roast and Ashley and her 4 children, also my son, his wife and youngest came, for lunch yesterday. She is doing good.
It was extremely hard to let her go, yes. She has been there almost 2 weeks...it's a 30 trial, so we will see...
740174Oh Tootie I have read your storey and my heart goes out to you and your family. When everything falls together as you have explained you just know that the correct decision has been made. Thinking of you always..
by toogie
11 Aug 2017
So far so good. With her step-dad Grayson working shift work, he was able to 'drop' in yesterday afternoon, before he went to work. He text her mom, Ashley, a photo so she could see all is well.
21044Thank you from the bottom of my heart for being so open and sharing this with this "family". It is absolutely evident that this child has a loving family who want only the best for her. You will all be included in my Cutie prayer list. Know that God has Avery's life in His hands just as much as we are in His hands. Be blessed as you walk through this new path. Avis
by toogie
11 Aug 2017
Avis we have always shared Avery's story. We know God has been with us from the beginning. Ashleys dad, my DH, would drive an hour each week to Ashleys house. He would pick her up and drive another 20-30 minutes to the hospital where a doctor would meet them after this doctor drove 2 hours one way. This specialist came every week to check the babies. He said because they shared the same blood supply , TTTS, one twin could die and Ashley wouldn't know, and the blood would contaminate the live twin. In the beginning the doctors offered Ashley an abortion. She said, 'No, you do all you can and God will do the rest.' This doctor has been featured on Discovery Health channel with a woman with Twin to Twin Transfusion Syndrome (TTTS). He would have to withdraw ambotic fluid off Avery's sack while Isabella was becoming shrunk wrapped. They call one twin the donor and one the host. Avery heart was weaken for having to pump blood through both. ...,So God has been there, from their beginning.
3003Your post brought a tear to my eye. I know it was a hard decision to make, but She will be well care for. God bless Avery and your family.Hugs Lynn
51302Dear Toogie,
It was so difficult for me reading your post. The love your family has for Avery and her well being is just wonderful. I believe with all my heart that you, as a family have made the right decision for Avery and her immediate family. Bless you Toogie. Hugs Sarah.
by toogie
10 Aug 2017
Sarah, it has been too difficult to even write about until now. Now we can see how she is still happy and taken care of, it makes it easier. We all love Avery dearly.
253107Avery looks like she is adjusting quite well. So sorry this was the course that had to be but also blessed that you found such an awesome place!!!!!!!!!!!!!!!! Prayers for you and your family as you all go thru this transition
by toogie
10 Aug 2017
Thank you so much and we are very thankful they have this place for her. They have all kind of equipment and one thing Avery loves....swings!
20077=My dearest Toogie, words fail me at this time. We have both learned we have to wholly and completely put all our faith and trust in the only one who can help us. God has had us on paths that we could only travel by depending on Him. Avery has been in my prayers so many times and still will be as well as you and yours.. This sounds as though God is leading and everyone is following and that;s always the best for everyone because with Him the outcome will be His will and everyone will be happy. God Bless she is a happy child , anyone can see that in her precious face./
by toogie
10 Aug 2017
Our dear sweet Lillian, just like you reaching out to others, even at a time like this for you.
Ashley is getting Avery at 4:30 tomorrow! As long as she can get her back before 4:30 Sunday, it will only count as 1 day. They don't have many, maybe 45 a year......
Avery is a happy child, filled with much love. She always liked when we snuggled and still does, although she can't fit against me like she did when she was little.-lol- I used to have her head, in the crook of one of my arms and my face toward the side of hers. She could hear my even breathing and would realize it was night time and time to go to sleep.
145789Oh, Toogie, my heart ached as I read about this difficult decision, but I truly believe God helped you along the correct path for dear, sweet Avery. The school sounds so wonderful and I pray she will blossom there with the staff's help. I also think that God saw that you, your husband and Ashley needed a much deserved rest. You all will continue to be in my thoughts and prayers. Love, Deb
by toogie
10 Aug 2017
For some time now the care of Avery has mostly fallen to Grayson and Ashley. Grayson has been falling asleep like he used to, when he had the brain tumor and he has been wonderful with Avery. I hope it's just like he is overworked and now can rest more and not the tumor back....
70753Prayers for Avery & the family - rest assured you have done the best thing for Avery. You are blessed to have this new path in your life. Unconditional Love, Shirlene
by toogie
10 Aug 2017
Yes, we are thankful, we finally got some help. Avery has been on a waiting list for some equipment/help at home for years. Wheels turned slow....Thank you for love and prayers, I really feel them. Cuties are the best!
211078What an inspiration you are, as well as Ashley and Avery, and a living example of Christ's love and grace. God knew the need before you did, and provided ways to accept it. I'm so glad that Avery is in the best place for her, and that you can protect your health too. I can't imagine how difficult Ashley's decision must have been. What a living testimony all of you are!
by toogie
10 Aug 2017
We all are for sure, each could tell their own. We just lift each other up and keep leaning on Him. He doesn't say it will be easy sometimes, or exactly what we want, but He will see all of us through.
We went by Ashley's today and she still has even more paperwork to fill out. It would have overwhelmed me, the stacks she already had to turn in. She said that may be why some children aren't in schools like this...so much red tape. She was doing well and had made a cake.
11860The Lord will keep watch over her and i am sure all prayers will be heard luv
1969I have watched her grow over the years and have send many prayers on her behalf. It sounds to me as if this place is meant for her. It must have been a difficult decision but seemingly the best for all. Looking forward to read about further progress and pictures of Avery.
by toogie
10 Aug 2017
For pictures, you may be sorry you asked-lol- They have a swimming pool and Avery likes to be in the water. Her legs get a workout there. We had one here and so did her dad's parents.
They also take the kids on field trips to things they like. Some like fishing, so they take them on outings. One requirement for this school is the child has to have an orthopedic impairment, so most are in wheelchairs but not all. A few have disabilities like Avery and some are completely normal minded. We talked to one of the young boys who has won awards in telecommunications. He is wheelchair bound, but mind is good.
We are hopeful Avery will improve. They want to start working with her communicating what she wants, how she feels. We are eagerly awaiting any progress.
As always, I thank you for prayers.
109762What a precious young girl. Indeed God Specializes in things that seems impossible and He can and will do what NO other can. I decree and declare that the Lord shall straighten out every crook thing concerning this issue. May healing manifest as never before in Jesus Matchless Name, AMEN!!! There is POWER in JESUS!!!
by toogie
10 Aug 2017
Amen
There is no chapter or verse declaring Jesus is out of miracles. He says to pray 'God's will be done' and also to ask in His name. Sometimes we ask and maybe our prayers aren't answered with the answer we want, but then His decision is just what we needed, but didn't realize at the time.
We prayed for Isabella, but I wouldn't pray 'your will be done Lord'. What if God's will was not what I wanted? When I finally prayed God's will be done, after seeing her whole little body swell with fluid because her kidneys wouldn't function, He took her home. I had to give it all to Him.
The doctors had told us the longest a baby had lived there without kidney function was 9 days. Isabella lived 19 days! At first, I blamed myself, for her lingering so long. I think God was waiting for me to humble myself to His will. He gave me time to accept His will.
That being said, we did witness the power He has. One night about 10 days old, when my son and Ashley were in the NICU they both came running out crying and Brian shouting her kidneys moved! I fell to my knees and thanked God right then. We had prayed she would have kidney function and she did, but it was not His will for her to live.....Looking back I thank God He took her home. He knew it would be hard enough for one like Avery, but two would have been too much for Ashley. He always knows best, it just takes some of us longer to give it over to Him.
63109Toogie, just read this - oh, my, you and your dear daughter and family have always done your very best for beautiful Avery and this school sounds as though it is the very best. None of your family has taken this step lightly and have done the right investigation to know it is the best decision for Avery. But, that doesn't mean it could have been an easy decision! I send continued prayers for you and your dear family. Loads of love, Laura
by toogie
10 Aug 2017
Oh Laura, the thought of letting go was so very hard! My church family and Ashley's too, have been in prayer about this decision all summer. I have broken down in my class my fear for the unknown for Avery was so great. They have been great support for me and I know God gave me peace when the day finally came. I know all of you would have been there with me through this decision but I just couldn't open up, my heart was so tender.
God sends us what we need and I think this is why we are finding out more people, some of us know, work there and are getting positive feedback. He wants us to find peace about this and He knows we NEED peace, concerning Avery. Thank you from the depths of my heart for continued prayer for her and your love.
95274Toogie, just reading this brought tears to my eyes. I do believe that Ashley has made the right decision for Avery and her family. Keeping Avery, you and your family in my prayers.
by toogie
10 Aug 2017
Like I said, there have been many tears, but she has given us so much more joy & love, as we have also given her. We always need prayer and her more so. Thank you-Toogie
16706Amazing how God works..... Wonderful that Avery is going to have a loving School to attend. Nice you know a lot of people already and the school is great. Avery is our Cutie too... IT was a very difficult decision to make and I am glad everyone was there to see and make the decision. Happy Avery is thriving. and you all have peace about your decision. God works in mysterious ways... Bless you all! You are in my prayers too.
by toogie
10 Aug 2017
We are hopeful, almost anxious, to see what His plans are for Avery. We know His timing is not ours, so we will wait and see, hoping for a positive change for her, whatever His will is.
Avery was given to us for a reason. She is already a testimony of His power again over physical death. Her heart was not pumping well enough when born, as she was sharing the same blood supply, through the placenta and Isabella before birth (Twin to Twin Transfusion Syndrome). After birth like Isabella, her kidneys didn't work. Hers didn't start working until the third day. Her heart had been in such a strain that it wouldn't pump the blood through her legs and they had turned black. The pediatric cardiologist said there were 3 medicines to try, but after the third, if the legs didn't improve, they would have to amputate. It took the third medicine, but that one worked. She was left with one foot smaller than the other.
111092Oh the trials of raising children and trying to do what is best for them. It is never easy. As my children were growing up, I figured out why my Mom often had calluses on her knees when we were growing up. I found I to often had calluses as well being in prayer for my children! Now that they are grown, they still get the prayers, only the knees don't look so bad as it is harder to kneel these days! Your grand daughter is beautiful and very lucky to have the family she does! Blessings to everyone and being lifted up in prayer.
by toogie
10 Aug 2017
Thank you for the prayers and encouragement. No, life is never easy. It has been especially hard for Ashley, but all this has given her amazing strength. I sometimes think she holds us up, instead of the other way around.
14619Such a difficult decision for everyone, especially your daughter...thoughts and prayers for all and that Avery will flourish and thrive in her new "home"...it will be an adjustment for everyone...
by toogie
10 Aug 2017
Thank you Kim. I know how hard it's been for me and it had to be even worse for Ashley. I didn't think I could go the day we 'moved' her in. That was also the day of the conference meeting and Ashley told us we had to go or that she wanted us there. Our meeting was from 10am until about 1 pm. My husband and I stayed with Avery until about 4 pm while her mom, Grayson, Avery's dad and his mom went in to office for Ashley and dad to sign all the paperwork. Ashley and Grayson stayed until Avery was put to bed for the night.
313851I can't say I can empathize, however I do understand the apprehension of other family members as I have a friend who's daughter has never spoken a word or made an intentional movement. My heart goes out to you. Best wishes to Avery and Blessings to you all.
by toogie
10 Aug 2017
I am learning to 'let go' and Avery is doing well there. I have been twice in the 8 days there and her mom has been about 5 times. She was there at 6 am Tuesday, when the doctor gave Avery her checkup and we are about an hour away.
173580Our precious little Cutie is such a well loved little girl. She knows that and you can see it on her sweet face.
I can't imagine the feeling of despair that went through each of you as this most difficult decision was made. You have raised a strong woman in your daughter and God is already using her mightily. The imprint of His hand is all over this.
Please know that I will continue to pray for Avery especially and each and every one of you.
by toogie
10 Aug 2017
Jerrilyn, I thought of you during all this and others here, with special needs children in their lives. One of the young ladies that told Ashley about this school goes to church with me. She never said a word to me about it. I approached her a few Sundays ago and thanked her for telling Ashley. She was so relieved.
Jami is an OT and had toured this school. She said it took her a year to approach Ashley about it, because she said, "How do you tell a mom, you think her child needs to live somewhere else?" Jami has a daughter the same age. She also works at the school Avery used to attend. She knew this new school could offer Avery so much more, but worried about hurting Ashley, with this suggestion. She said the day she actually did tell her she hadn't planned on it, it just came out. He does give us the words to speak when we go to Him in prayer, as I am sure Jami did.
Thank you for prayers for Avery and us. I haven't said anything before, but I have been having some test done and will have day surgery the 15th, to get a biopsy. I appreciate your prayers for all of us.
158553What a time you have all been having. Such a heart wrenching decision to make but it sounds like Avery is in a very good hands. Amazing how the right people cross our paths right when they are needed. I imagine you are all missing Avery terribly. Thinking of you and big hugs as you all adjust.
by toogie
10 Aug 2017
I sure missed her last night! Her teacher text me the first day of school and said she could plan a Facetime with me and Avery! Wasn't that nice?
Talk about putting people in your path. Ashley said after the third person told her about this place, she believed it must be God opening this door. She just had to through on faith that this was His plan for Avery. She said she would love it if Avery could learn! We know Avery understands some commands, to lift her head when told and she tries to make sounds with the music, when told to sing.
13241Toogie, your lives have been blessed with dear Avery, she does look very happy in these photos you so generously share with us all. Her family have given her such a wonderful life and have prepared her for the next stage. I am sure she shall be well cared for in her new school and accommodation, and will be very happy there. I feel so happy for you all, that the difficult decision has been made for Avery"s on going care. I look forward to your family stories, which I enjoy so much, but remember you have many friends who are thinking of you all wish everyone the best in these hard times. Do keep us informed of Avery's progress in her new home, god bless you all. Sandra.
by toogie
10 Aug 2017
Oh Sandra, you make my heart feel so good.
I will gladly continue to share Avery with you. I forgot to add the first 30 days is a trail. The school has the option to refuse her or we have the option to pull her out. If they have a child that is violent, they can't keep them, as they have other children to consider. That is good to know, as Avery cannot defend herself. They said there shouldn't be any reason on their part to refuse her.
They have medical staff round the clock and honestly, that is a burden off me. I always hoped I could keep my head when an emergency arose, as we are rural and it takes 20 minutes or more for ambulance. I always said the night Avery was air lifted to hospital, Ashley saved her life by starting & keeping CPR going until First Responders arrived.
24329Dear Toogie thank you for letting us know the latest about our favourite little cutie, Ashley has had to make a difficult decision as to the next step in Avery's care. The school sounds like a very nice place to live and learn for Avery with caring people to help her along this new path. I will keep you all in my thought and heart. Marian
by toogie
10 Aug 2017
Marian the first day we were there, was the day we went to tour. There came this young girl rolling in her wheelchair down the dorm hall shouting, "I want to meet Avery!". That was Brittany.-lol- The children had been told there may be a new girl coming and they were all excited to meet her.
45917Dear Toogie, I'm so pleased you have now shared your beautiful story with us all. I know what it has been like for you. My heart goes out to Ashley for all the years of care she has given Avery and I know that Avery will be so well looked after in her new 'home'. It has been a privilege watching this beautiful young women grow over the years we've been on here. God is good all the time and He knows our every need. God bless you all, love Chris
by toogie
10 Aug 2017
Chris, I can always count on you for support through prayer and encouragement. I have to say, when Ashley and Grayson married, it was hard for me to turn Avery's care over to him. I thought I could tend to her better, you know, no one does it as well as you.-lol-
Grayson has been a Godsend. I commended him, in front of the conference group and Avery's dad and other g-mother. If he had to be at work at 6 am, he would get Avery up early, give her meds and help Ashley lift and shower her, before he left for work. I was so proud of him, when one of the doctors at the meeting asked about Avery's meds. Grayson knew the meds she was on and exact dosage. He has cared and loves her as much as any father.
When Avery's dad left and Ashley finally came home and told us, she questioned the future for her and her children, Mason and Avery. She said when she married she thought it would be for life. Later if she ever find anyone that she wanted to marry, who would want to take on a woman with two kids already and one with special needs like Avery? I know she was hurting, but I gently reminded her how God has seen her through her cancer, the lost of one child, the difficulties with Avery and he would through this divorce. Just keep trusting that He has her plans already laid out. We told her to come home so we could tend the children, while she went back to get her degree and license to work.
A few years later, God gave her time to heal, Ashley was strong enough to speak at a church that our youth minister had moved to. He had always kept up with Ashley and knew her struggles. He asked her to come give her testimony to his congregation. Well we found out much later, Grayson's dad leaned over to Grayson and said, "Son that's who you need to marry!"-lol
by pennifold
10 Aug 2017
God is in everything isn't He Toogie? That last sentence gave me goosebumps, that is God's plan all over. I truly believe that. Love to you and your family, Chris
234253thanks for sharing such a personal story Toogie. Avery looks lovely and also happy. xx
by toogie
10 Aug 2017
It has taken me all summer to share something so dear to my heart. I couldn't expose myself to any negativity, because my heart is so full. Everyone has been so kind, as always. Until you LIVE the daily life, no one really knows. For instance a few weeks ago, I got a 1 am phone call. Nora the 4 year old had to be at the orthopedic to get her cast removed at 8 am. Grayson was suppose to be there for Gus, the 1 year old, and Avery. At 1 am he was called into work, so she had to call me and she did apologize, to see if I could come stay with the other kids. If not, she would have to unplug Avery night pump early, medicate her, shower her (she showers mornings as she sweats so much at night), get her braces on and dressed, load her wheelchair and her, not to mention getting herself and the other two ready, getting them all up at an unearthly hour to be at the doctor for 8. Of course, I went.
16529I feel for you and your family It must have been such an hard decision to make. My daughter has a 16 year old autistic daughter and it worries me what will happen to her when my daughter can't cope or if something happens to her. You will be in my prayer
by toogie
10 Aug 2017
I know its always a concern about their future care, if something happens to the caregiver first. I had told Ashley I would help her as long as I was able. The specialist had told me not to lift on her anymore, but there were times when I was the only one and had to. Afterward, I would most times, have to go get an injection and be down with my back for awhile. I told Ashley she had to think of her other children, too. After she hurt her back it made her realize if her back gets like her dad and myself, at such a young age too, how will she tend the others.
76409Toogie this story has brought tears to my eyes. You have all done a excellent job getting her this far. Your daughter is a wonderful mother to be able to come to this decision. I am sure it is Gods will and Avery will be happy. I can understand you not being able to talk about the situation. We lost our 1st Granddaughter who was born 3 months premature. She lived just 4 short weeks and that time was unbearable.. I had to be so strong for my daughter and Son-in-law.There are things that I don't talk about but think constantly although it has been over 30 years. She is still in my heart. I am sure she is safe in Gods care now. My love and prayers are with you and all your family and especially Avery. Hugs Shirley
by toogie
10 Aug 2017
Oh Shirley, life is so heart breaking sometimes. I am so sorry for your loss. Avery and Isabella were born 3 months too early too. Isabella, Avery's twin lived 19 days, so I know how your heart felt like it would burst. She will always be in your heart, I truly know that.
Shirley, Ashley has been through so much, much more than some who have lived much longer. She is a strong Christian woman and her faith is where her strength lies. She goes to God for everything, depends on Him for everything. She has placed Avery in His hands now. She has always said, she would not keep Avery in a bed, never taking her out. They have taken her everywhere with them. Ashley wanted people to see how Avery is. She said IF it be God's will to fully heal Avery, she wants the world to know it came from God. This would not be someone pretending to be healed. People will know her and know that it could only come from God.
by shirley124
10 Aug 2017
You are so lucky to have such a wonderful and caring daughter. And Avery is such a lucky girl. I sure hope she loves her new school. it is good she can go home on weekends. Big Hugs
by toogie
10 Aug 2017
I cannot believe how blessed I have been, able to raise a family that cares so much for one another. When one needs we are all there.
I am glad too that weekends are ours, even though school is year round. I am sure you will see Avery in my sewing room again, as she likes the sound of the machines.-lol
52676I really hope all goes well for you, especially Avery & I hope she will be happy in her new school. What an awful time you must be having but I'm sure meeting all these people that are somehow connected to you have been sent for a reason, Lets hope there are no more negatives only positives from now on. She's a lovely looking young girl I might add & I'm sure she brings joy every day
Irene
by toogie
10 Aug 2017
Irene, thank you for your words of hope and encouragement. Avery is like my own child. They came to live with us when her dad left and her mom went back to college. I remember it would take an hour to feed her a meal and then I would repeat every 3 hours. Even when Ashley came in from class it was study, so I bathed Avery and Mason too, so Ashley could put them to bed and spend a little time with them. Ashley, Avery and myself would drive 4 hours one way, to a hospital and stay for operation or specialist to see. I took off a week of work once to go tend to Avery,as she was up 3 days and nights at a time with no sleep, the first year. Ashley would be worn out. Finally, at a year old, the neurologist gave Avery something, where she would sleep nights. We have been through so much with her and she has been through so much. I am thankful for Him trusting her to us.
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