Sunday 12 January 2014

Having a Brother with a Disability

Last week Jalen said to me that he always wondered what it would be like to have a brother who wasn't disabled, and now that Noah isn't here, he knows that it's not good at all.   Our life is so different now without Noah.  We can just jump in the car and go somewhere without thinking twice.  We don't have to worry about seizures, or sickness, or meds or feeds, or suctioning or toileting, or wheelchair access. 

But Jay agreed that he would prefer to have all of that back, if Noah could still be here with us.  I knew it wasn't always easy for Jay because Noah needed so much care, and after he said that, I joked with him that he should do a blog post for me.  He said that he would like to, and this is what he wrote:

Ever since I was younger I've always wondered what it would be like to have a brother who wasn't disabled. And now I know.  It sucks.
I feel like Noah has made me who I am today, he taught me to accept people for who they are and to be more caring. From a very early age I've always loved Noah and he was my only brother for a while. 

 

 I remember on my first day of school I came home and went up to Noah and asked "Did you miss me Noah?" All he did was smile! His smiles were the greatest things in my opinion it would lighten up my day and makes everything so much better, sadly he didn't do it as much as he was getting older.
People would find Noah so interesting or feel sorry for us but I just found him normal and just treated him like anyone else and like he could talk and walk, but at times I wished he wasn't disabled so I could have a brother closer to my age to hang out with and play with.


 
A few month before Noah died I asked Mum how much longer do you think Noah is going to be around for? She said "Maybe a little bit longer"I said to her "I think he is going to die soon" then a few months later Noah was in hospital for the final time.
The day Noah died, Mum and Dad took me and the boys and told us Noah would be passing away.  This was the biggest shock for me and I thought he was going to be fine as he has been with all his other trips to the hospital. I was so upset and cried for ages just looking at the clock all day. When the time came it was the hardest thing for me to say one last goodbye to him  When he passed away it felt peaceful in the room and I was happy for him to be out of pain.
I'm so grateful to have Noah as my brother for all the blessings, life lessons and memories he has brought me and my family, and I want to make him proud during my life time.

27 comments:

  1. Oh Lisa that was so beautiful. Jalen you are an awesome person and a wonderful brother and one day Noah will thank you for what you have done for him and you will be able to thank him for the influence he has had on your life. Thank you for sharing your thoughts. I appreciate it. Vicki Travers

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  2. That is beautiful Jalen! I'm sure Noah would be so proud of you already. Sounds like you two were a perfect match. It just sucks that he had to go so soon.

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  3. That's beautiful Jalen! You were very lucky to have each other and sound like a perfect match. I'm sure that Noah would already be so proud of you.

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  4. Loved this! Thank you Jalen... You and Noah are very special young men, you both are continuing to touch people's lives. Thank you for sharing your thoughts.

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  5. What a great blog post. Jalen, I think you should write more often. Thank you for accepting everyone as they are. Not many people do that :-)

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  6. What a beautiful post. Jalen, you are a terrific writer and articulated your feelings so well.

    Jeanette
    USA

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  7. What a beautiful post. I loved hearing from Jalen's perspective. I work as a therapist with disabled children and am so inspired by the loving families I work with. Thank your son for sharing and reminding us that everyone is precious and worthy of acceptance, no matter who they are or what their life it like. He is a admirable young man.

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  8. Jalen, I loved the post you wrote about your brother Noah. I am sure he is up in heaven looking down on you and is so proud of you. He would want you know how much he appreciated you and your family taking such good care of him. ~ Lisa in Oregon

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  9. Jalen, you write so beautifully about your sweet brother, Noah! You are such a special kid and I know your mom is very PROUD of you!! Keep doing what you are doing :)

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  10. Well done Jalen for sharing your thoughts with us on your brother Noah.

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  11. You are such a lovely brother Jalen.

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  12. How precious! There is no doubt in my mind that your brother loved and adored you as much as you did him. Thank you for this post. As the mother of a special needs child who is now with Jesus, I often wonder the feelings my older son has and had having a disabled brother. This post warms my heart. Your such an incredible young man!

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  13. I really enjoyed reading Jalen's post, I hope he becomes a regular contributor on the family blog :) Thanks for sharing.

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  14. That was so beautiful Jalen. A part of Noah lives on in you by the way you continue to be kind and thoughtful and considerate, not just to your family but to everyone you meet. You truly are exceptional and such a wonderful reflection of your parents. xoxo

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  15. Oh my goodness, wisdom beyond your years. I am sure that Noah is SO proud of you, as he should be :)

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  16. You are indeed very wise. You have experienced more grief than a child should, however, you have also experienced the love of family. Thank you for sharing.

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  17. Jalen your post made me tear up. In a good way...

    Having Noah in your life obviously has enriched it and made you so very wise, loving and caring. I am sorry you are missing him and your Dad and it seems so unfair. Good for you for seeing the bright side.

    I envision you growing up and being a very great man as your father was. Loved, admired and respected by oh so many. Already you have many, many fans in life and through this blog :)

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  18. Oh you sweet sweet boy, you have most definitely made your brother proud! You are an inspiration to me! It is apparent that you love him very much! The wonderful thing about our religion is that we know that because your parents were married in the Temple that you will be a family again someday. And when that day comes and you get to meet your brother again I am sure that he will thank you for being such a wonderful brother and because we know that when we are resurrected our bodies will be perfect. You will have the chance to have the kind of relationship that you wanted with him but it will be 100 times better.

    "The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude."
    - Joseph B Wirthlin

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  19. aww Jay, you are the best big brother xxx.

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  20. BEAUTIFUL! This was ME. I had a disable sister for 22 years and although I did not want her to suffer anymore I think about her every single day since she passed!

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  21. Jalen, you are a compassionate and well versed young man. Thank you for sharing your thoughts with the world. I am sure your mum, dad and all three brothers are so proud of you.

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  22. what a brave son you have!

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  23. Awesome post Jay! You are a champ! Those pictures of you and Noah are so cute! So many wonderful memories! You are a great example Jay, keep it up;)

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  24. Jalen, thank you for sharing your thoughts and feelings. You are wise beyond your years and such an awesome big brother! I love the pictures of you and Noah. Hugs from Illinois to your whole family!
    Susan A.

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  25. What a sweet, wonderful, amazing post. Jalen, thank you for sharing that with all of us "out here". Your compassion and kindness will be a gift to many.

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  26. I've been following your blog for a long time and this is honestly one of my favorite posts. I love that it's from Jalen's perspective. I think a lot of times as moms we think about how other moms deal with loss and grieve and not so much about siblings and their perspective and feelings. Jalen, I KNOW you're making your brother and dad proud!! Stand strong and stay true to who you are! Sending all our love from Utah.

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We are so grateful for everyone's love and support, and appreciate your comments xoxo

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