Lately we've been dealing with trying to get the assistance and support that we need to continue to care for Noah in the way that we do. I don't want to go into all the details here, but to cut a long story short it costs a
lot more than what we earn or are given through government allowances, to pay for all the things we need to care for him
Because of this I have been spending a lot of time doing a lot of writing, which has included writing down everything about Noah and his condition. Years ago I wrote Noah's 'story' and it has been on the
Rays of Sunshine website since he was a baby, but I have just spent some time updating it.
When I wrote it I realised that a lot of people probably don't know a lot about Noah's condition and how things have come about, so I have now included it on our blog. Lots of the info about Noah and his condition is of course on our blog in different spots, but I'm glad to have it all on one page now.
The link to his updated story is on the link above that says 'Noah's story'.
Well written Lisa it's good to have it down so you can look back and remember the things that you have been through and to see the changes and how you coped, also good for other families to see how other people cope!
ReplyDeleteHi Lisa, You are doing a mighty job with Noah and his brothers. Children with special needs bring love to a family, despite the hard work. Hang in there - you are in our thoughts.
ReplyDeleteFelicite & Geoff Randall
I love that you have it all written down, i love reading it from when Noah was a baby. He is so sweet, i love that last picture of him. <3 xxx
ReplyDeleteSometimes my heart is so full, there are no words to express what my heart wants to express.
ReplyDeleteNoah has come to a family that could not care and love him more than your family.
He has added so much to my life, and I feel that he has made me a better person. I always come away from him thinking that, I have been in then presence of an awesome spirit, held in an imperfect body.
I feel like I have always known him.
I am grateful that you and Aaron care and love him as well as you do, and that the boys love him as well, and they will have an understanding of life that a lot of kids will never experience.
Thank God for people like 'Pooh Bear'.
Love mum.
xxx
I love your mums comment - so beautiful. I often cry when I read about Noah. It was nice to read his whole story. Such a special little spirit and such a special family. Thanks for sharing.
ReplyDeleteWow Lisa. That is one amazing story.
ReplyDeleteSo much that I didn't even know - or remember.
xxx
I can't wait to go and read it!!! :)
ReplyDeleteAn amazing boy with an amazing family who love him so much xxxx
ReplyDeleteBec H
Lisa,
ReplyDeleteNoah's story is so lovely and not over yet. It is wonderful that he has proven the Dr wrong in his life expectancy. It is awesome that he can recognise friends and family and that smile just makes you melt. I love reading about your family!
Ande
What a touching story... He is such a lucky boy to have such a wonderful and loving family-- and what a blessing he is to each of you as well! Sending all my love! XOXOX
ReplyDeleteI think having Noah in ALL our lives, has made us ALL better people...
ReplyDeletexxxxx
there is so much i have forgotten and just plain don't know about this gorgeous boy - and no doubt he was intended for your family to provide the love and care that only you can xxx
ReplyDeleteYou guys are definitely the right family for him. I always thought right from the beginning how hard it was going to be, but you guys have such a good attitude about all of it, that you wouldn't even know how hard it all is because you are all so very brave. You are all very inspiring:) xxxooo
ReplyDeleteHe was such a cute baby with that gorgeous skin!!!
ReplyDeleteOur Karli has very similar story to Noah's. Karli is only 4 years old and is one of the biggest blessings in our life. Even though our children cannot do many things independently, we know when they are happy, sad, in pain, or comfortable in their surroundings. God bless us caregivers and parents to these little ones, whom God has trusted us to care for them. Thank you for sharing your story.
ReplyDeleteNoah is a very special boy! And you are a very special mum and dad! Your love, and Noah's brother's love is evident in your family pictures! Heavenly Father placed Noah with you for a reason, because He knew you would love and take care of Noah!! God Bless your family and dear, sweet Noah!! Chrissy sends her love!!
ReplyDeleteThank you for sharing your beautiful Noah with all of us. I work with the disabled and am constantly amazed at the blessing that they are to all around them. Heavenly Father knows what is best for us and he gives us what we need and he certainly knew what he was doing when he gave you to Noah and Noah to you.
ReplyDeleteAn amazing story of an amazing family given the gift of an amazing son. My heart swells when i read this. There are angels on earth as well as in heaven.
ReplyDeleteI would like to thank TOFW because thru them I found your blog and get to know Noah and your family from a distance. I am happy to be able to share something small to his charity as well.
ReplyDeleteI am weeping as I read his passing just today. There is rejoicing in Heaven as he was welcomed back.
I love the photos you took, and one particularly stands out - on his final moments he had a tear on the side of his eye.
Noah, you fought a good fight, you have been brave.
Thank you and God bless your whole family and friends.
Aileen- Melbourne
You are an awesome family and I can tell Noah was such a special boy. Now he lives on and is able to watch over you from Heaven.
ReplyDeleteThank you Lisa. You have done such a beautiful job of recording all of life's precious moments. It can't be easy to write some of the things you have but I, for one, am glad you have xxx
ReplyDeleteI just read your blog for the first time today. My heart is so touched by your story and your courage. I am praying for you and your sweet family...I really am.
ReplyDeleteI went back and read Noah's story. All I can say is that the Lord knows what He is doing. You and your husband obviously were the perfect parents for this special boy. I have a son with Dravet Syndrome...an epileptic syndrome. As I read about Noah and all the care you provided for him I stopped feeling sorry for myself. Sometimes it feels like too much to handle...but you were handling so much more than me. Bless you and thank you so much for your inspiration. May the Lord continue to be with you. Sending prayers and love all the way from Utah.
Thank you for sharing Noah's story, Lisa. What an inspiration you are! I'm sure your family will miss the opportunity to serve him after doing it so faithfully for so many years. Just wanted you to know my prayers are with you and your sons as you've dealt with so much these past months.
ReplyDeleteWhat an inspiring story you and your sweet family have. Thank you for sharing it with us, I'm continually amazed with what our Heavenly Father has planned for each of us. Your story is one that will be in my heart for years to come.
ReplyDeleteWhat a sweet spirit Noah was and what a blessing he must have been to all those around him. I can't imagine the day you meet him once again, what a great moment that will be!!
Love, Cami Wright
Please stay strong. I don't know you but you and your boys have touched me. You are all in my thoughts and prayers. Michelle
ReplyDeleteAs I step through life I continue to be amazed at how so many people have the capacity to extend themselves to deal with terribly difficult circumstances, and not only cope, but live and laugh and love.
ReplyDeleteYour story is so sad, especially now losing Aaron - I feel for you all and am in awe of your capacity to love.
Your family has inspired me to treasure every day and hope for heaven.
ReplyDeleteEven though we are strangers to each other, we are sisters in the gospel of Christ. I stayed up until 2 a.m. reading about your family on your blog last night and was so incredibly touched. What an inspiring family you are, and what an amazing mother. I want you to know that my family prayed for the Kings in Australia twice this morning and you will continue to be in our prayers. Love from Utah.
ReplyDeleteBlessings to you all. You will be together one day again.
ReplyDeleteJust read Noah's story. His life was similar to my son, Peter's. Peter was born by emergency C-section and then suffered 15 minutes without oxygen. His diagnosis was Hypoxia Ischemic Encephalopathy. I, too, questioned docs on how long we would have Peter. Since he was unable to swallow, the answer was six months. We were lucky to have him for nine years, three months and three days. He looked a great deal like Noah. I know your family is stronger for your journey with Noah, as is ours. Glad our paths crossed!
ReplyDeleteLisa,
ReplyDeleteI was lead to your blog through the blog of another young widow. You have a most heart-wrenching story and I so admire your strength and fath and courage. A couple of days ago I watched the clip of your presentation at TOFW and just wanted to say how gorgeous Noah was with his big eyes and sweet smile. I have not been able to get you all off my mind. Thank you for sharing your your heart to touch ours. May Heavenly Father continue to bless your family :)
Kassie from Utah
Thank you Kassie. We miss Noah and Aaron so much every day. Xxx
DeleteThax so much for the story.since ihave a9month old baby with hydraencephaly
ReplyDelete