Comments for Different Dream

Comment on Why I Don’t Know How You Feel by Jolene

Jolene — Thu, 11 Mar 2010 15:38:56 +0000

Yes, I saw the announcement of Leyla’s birth at Nicolas’s CarePage. What a wonderful gift she must be. Thanks so much for the Facebook link so more parents can find the support they need. And the Nelsons are amazing parents, aren’t they? God works in mysterious ways, using people to bring light into our lives in the midst of difficult times.

Best wishes to you and your family,
Jolene

Comment on Why I Don’t Know How You Feel by Nicole

Nicole — Thu, 11 Mar 2010 14:57:42 +0000

Thank you Jolene.
We have found our joy. Joy in the strong belief that Nicholas is at peace and is healthy. In some ways, both our children became whole on that special day in May.
We also find joy in the recent birth of our beautiful daughter Leyla. She was born with her brother’s spunk, her own personality and a very healthy heart. We believe she has a very special guardian angel watching over her.
I posted a link to this site on my Facebook page as I have many friends with amazing and “special” children. Some mention to me how they sometimes feel alone. It is great that this site allows them a place to share with others.
Thank you for your efforts in this area.
If I can help in anyway, please let me know.
BTW: I found your site through “Moments with Moriah” . Her and Nicholas were born only a couple of months apart and both with CHARGE syndrome. They are an amazing family and the mutual support between our families and the triumphs of their daughter have given me strength.

Comment on Why I Don’t Know How You Feel by Jolene

Jolene — Wed, 10 Mar 2010 19:07:07 +0000

Nicole,

Thank you for sharing your son’s story and the link to your writings. Thank you, also, for your wisdom and encouraging words to parents dealing with the loss of a child.

Nicolas’s homegoing day was our son’s 28th birthday, the first birthday we spent with him after his PTSD treatment, as a whole and complete person. To think of your suffering on the same day our family was restored touches my heart deeply. My prayers will go up for your family every May 23rd from now on.

May joy be yours one day soon,
Jolene

Comment on Why I Don’t Know How You Feel by Nicole

Nicole — Wed, 10 Mar 2010 17:51:18 +0000

Our son Nicholas received his wings on May 23, 2008; 5 months and 4 days after he was born. We do find comfort in knowing that he is nestled in God’s sweet arms and that his heart and body are now whole and healthy.
For me, I found therapy in writing both during and his incredible life and even more so, in the journey that we embarked on, after he earned his wings.
All I can tell you is it takes time. It takes tears, it takes laughter and it takes holding those that are important in your life close to you. Reach out for support and find a therapy that is right for you, whether it be writing, exercising, crying, needlework etc. Find your outlet and give yourself the time you need to work through it.
Some people have said they found comfort in some of the writing I did after the loss of our dear sweet Nicholas. If it is of any help to you, I will pass it along here. https://www.carepages.com/carepages/NicholasHoward
God be with you as you embark on a journey that no parent should ever have to travel. May you find peace and the ability to smile once again.

Comment on Parents Need TLC: Part 2 by Jolene

Jolene — Thu, 04 Mar 2010 22:06:19 +0000

Thanks, Barb. If you all haven’t been to Barb’s website, you should visit it. Great resources for churches wanting to start a ministry for families of kids with special needs.

Comment on Parents Need TLC: Part 2 by Barb Dittrich

Barb Dittrich — Thu, 04 Mar 2010 18:29:19 +0000

Great insights, Rita, and good article series, Jolene!

Comment on Do You Need Music for Your Soul? by Jolene

Jolene — Mon, 01 Mar 2010 19:56:04 +0000

Hi Lynette,

Sorry it took me so long to respond. I’ve been out of town. I have several questions for you, but will contact you via your email address instead of through the blog. Hang in there!

Jolene

Comment on Do You Need Music for Your Soul? by lynette

lynette — Sat, 27 Feb 2010 05:01:29 +0000

jolene, as i was riding home today with my daughter in the van from the depression center at u of m, (because earlier i had come out of the middle of the session with her counselor and called my husband crying to him and saying “i think she may try and hurt herself. the counselor asked me if we have guns in the house. she is so tired of being sick and tired. i don’t know how to help her” and my husband and i prayed together in the bathroom) i thought i would leave you a message. i can’t be the only mother with a chronicly ill child that was normal till 14 and now at 17 feels hopeless…i know that God is there for us, and I know he holds my precious child in his hands…but what if that just doesn’t seem enough? what if she doesn’t understand or is so mad that “God allowed the docs to make a mistake and how can he love me?” ? i can’t be the only mom who doesn’t know what to do, as people flock when it’s your child with cancer, and devasting complications, but depression isn’t fun to be around. she is hurting and it hurts to be around her. when she needs the most support, it seems to be to much to be around for the friends she used to have when normal and now they just don’t know what to make of this angry vented and wheelchair dependent child/friend. thanks for listening, and after reading your blogs and your updates, thanks ahead of time for the prayer.

Comment on How To Make a Child’s Dream Come True by Jolene

Jolene — Sat, 20 Feb 2010 22:10:18 +0000

Hi Winter,

Thanks for sharing more of your story with us. Also, thank you for your thoughts about hope and the reminder of how other people helped you find hope again.

Jolene

Comment on How To Make a Child’s Dream Come True by Winter

Winter — Thu, 18 Feb 2010 22:18:25 +0000

Hi! I’m Winter that this article is about.

My dream was so amazing. Everyone was so kind, gentle, and understanding. They cared enough about me that they were willing to work with the medical challenges without making them a “big deal”. And even while they did that they recognized that it IS a big deal. I know that doesn’t make sense…it’s just that they worked with the challenges because they knew it was important and yet they let me just be a teenager, and not a “patient”.

There was also an amazing feeling of being able to choose. If I wanted to I could walk in the snow. If I wanted to I could play pool. I COULD. And more I could CHOOSE!!! So many times in my life I have no choice. I have to do so many things, and be so adult-like in many areas many teens don’t have too. And so when I get to CHOOSE to do something (even if I don’t have a choice in some of my medical things) it felt wonderfully freeing.

Before my dream I was beginning to think that life was just too much for me, and I couldn’t keep going. People didn’t understand and they didn’t want to. My friends were great but I just was running out of hope for the future. After going to MT I realized that there is hope. It snuck in slowly…first I knew that there was hope in MT but I still didn’t think that in FL where it was too hot to be outside (because of health)for six months out of the year that I had no hope until I could move away. Well the trip ended and the plane landed in good old FL. I must admit I began to cry, about being in a place that hurt so much. as we were walking out of the terminal I saw a woman cleaning, she was so sad and depressed feeling. I felt so sorry for here in the midst of my pain at being “home”. I gave her my “brave” smile trying to cheer her and trying to cheer me too. She smiled so big back that a rush of love and hope sprung through me. God’s hope.

That is when I realized that any where God is there is hope. And I can experience the hope he has given me. And I can share that hope with others by simply smiling.

I am proud to say that before my trip I felt hopeless. BUT God used snow, horse, and the most AMAZING people to show me there is hope. And I will hold onto that hope through everything I will experience.

Thank you to everyone who made my dream come true. And thank you to all my friends and family for supporting me through my sad and happy times. But most of all THANK YOU GOD FOR YOUR HOPE!!!!