Our family received word about a month ago that Amelia is officially approved for the kidney transplant. All of her specialists, and some we have only just met, have agreed that there is no medical reason for her not to have the transplant. I will donate my kidney when Amelia’s kidney function falls to about ten percent. She is at about 14% right now. Amelia was at 15% last December when we first heard the news that she would need a kidney transplant.

Although it is difficult for me to share this private information, I know it is important to follow up with how our wall is slowly being taken apart brick by brick and how the readers of this blog have had such an important role in making this happen. We have been contacted by so many generous, compassionate, and caring people wanting to share their stories, offer their prayers, and show their love for Amelia. Many strangers have supported our family through blogs, tweets, Facebook and the petition (Thank you Sunday Stillwell)!

For quite some time, it was very difficult for me to get past the negative comments people would make about my daughter and the special needs community. As anyone with children can understand, there is a primal instinct that overpowers a parent to protect their children when they are threatened physically, socially and emotionally. Walking away from the negativity and focusing on the positives that have happened since last January is a big accomplishment for me. Another life lesson Mia and the boys have taught me as a parent!

Oh, and most importantly, I have absolutely no regrets about writing “Brick Walls” and the chaos that ensued afterwards. It has opened many people’s eyes to just one more injustice that the special needs community endures because someone in authority does not believe a life that Is different from their own is worth living. I stand by what I wrote and heard loud and clear what was being presented to me that day. Brick by brick, I hope we can all work together to take down the walls society places around our children.

 

Photos courtesy of Cindy P. Amelia’s teacher and best friend!

 

 

Donate to the wolfhirschhorn.org community.

Tagged with:
 

24 Responses to Kidney Chronicles Part Three

  1. Sheral Jackson says:

    GREAT NEWS CHRISSY!!! I’m very happy for you, Joe, the boys & especially for Mia! God Bless you all!!!
    Here’s to fighting the good fight!

    xoxo
    Sheral

  2. Bea Coleman says:

    Congratulation! Truly a blessing!

  3. Catherine Whalon (Amelia's Grandmother) says:

    THE BEST NEWS for everyone especially Amelia Catherine so Happy for all of you God has answered prayers and so has chop God bless

  4. Letty says:

    Congratulations! I’m so happy for you. When I first read “Brick Walls” I cried and cried just as if she were my own. I cannot even begin to feel how your family felt….but I felt terrible. I’m so happy she’s going to be given that second chance. I will be praying for your baby girl. She’s adorable.

  5. Letty says:

    One more thing….SAME on all of those people who had anything negative to say!

  6. Sara says:

    Thank you for sharing your daughter with us, and updating the blog I think of her and your family often. Hugs and continued strength to you as you endure the upcoming medical procedures, and dealing with the I insensitivities and injustices within our community especially those we go to and trust to help us. Amelia is a perfect and special!

  7. Heather (Frankie's mom) says:

    Hallelujah! She has been often in my thoughts and prayers, and I will continue to pray that the transplant goes smoothly for both her and you. Also I’m happy to hear that you are able to see some positives that have come from this ordeal. You were on the front lines of an unfortunate but necessary battle to open the eyes of many, many people to the rights of our children. And I am so grateful for your perseverance. God bless you and your family.

  8. Words cannot describe how happy I am to hear that Mia will FINALLY get the transplant she needs and deserves.

    God bless your sweet family Chrissy and please know that you will all be in my prayers.

  9. Heather Houston says:

    I am so thrilled to hear this news! I just want to say God is so good! Bless you and your family and may he hold all of you in the palm of his hands throughout this journey. Hugs to you!!

  10. Adrienne says:

    I’m thrilled to hear that your amazing girlie will get what age needs. Wonderful news!

    Those haters are one among many reasons that we SN parents need each other so much. Our kids matter. Our families matter. No amount of bitterness from outsiders can erase that!

  11. WANDA says:

    How wonderful to open & read your good news. I am very happy for you & for amelia. Every child deserves a chance at life regardless of their circumstances. My prayers for suggest come along with this comment.

  12. Carol Ritchie says:

    I am so very thankful to hear the news- Mia has been in my thoughts and prayers. Wonderful to hear that while I was praying with no knowledge of what was happening things were being worked out in a marvelous way. I have learned from personal experience what a blessing a child who has been given a life perfect and complete in everyway, though different from what most see as typical, can bring to family and friends. My prayers will continue for Mia and your family as you go ahead with the surgery which will be required down the road.

  13. Paula says:

    Wishing you and Mia the best of luck. My prayers are with all of you.

  14. Cheryl says:

    I am so glad for your family. It is wonderful. e will continue to keep your family in our thoughts and prayers. I loved your words you wrote–so very true.
    Your words from Brick Wall I did share on facebook and one of those people that was too mortified by what you had to endure from people in the medical profession, was the pastor of my church. The day she read the article she decided to change her sermon for that Sunday and talk about life–being treated with compassion, does any person’s life matter any more than say a nephrologists, etc.
    Again–I am glad that she was approved for the transplant. 🙂

  15. Melynda says:

    Thank you so much for the update. Back in January when I read Mia’s story I posted about it. The response I received was amazing. I post again tomorrow and will up date my readers. I’m also happy that you wrote Brick by Brick. People truly are moronic not to think that these precious lives are worth saving. Good for you for proving otherwise.

  16. JO WITNEY says:

    So very happy to hear the great news. You young lady are a hero, you don’t know it yet, but what you have done for the handicapped will be remembered long after we are all gone. You had the guts to stand up and say no I won’t be shoved under the carpet, hidden in a closet, or ignored. You were/are so right no child is more deserving than another. This message will resonate throughout the world, and hopefully it will touch every compassionate heart it finds. We need more people like you honey. Bravo, and I’m following you till that precious baby girl is better, and beyond. jo

  17. Megan Comorote says:

    What awesome news for such a wonderful and deserving family!! I will continue to keep you, Joe, Mia and the boys in my prayers!! God bless!!

  18. Chrissie Parker says:

    What great news for Mia and your family!! So happy to hear this! Thoughts and prayers are continued!

  19. Noreen Ringlein says:

    Really happy that all your efforts have lead to this. You are an inspiration for all families with children with disabilities. Keeping Mia and your family in my prayers.

  20. Karleigh Jones says:

    I am stoked to hear it and wish you all the best. <3

  21. helen says:

    I am sooo very happy about the news!!!god bless you and ALL your family and hope everything will go as it should
    good luck and lots of love!!!!

  22. AnnMarie says:

    God Bless beautiful Amelia

  23. JenB says:

    Reading Amelia’s story is very moving, I just read it all today. I am so happy the hospital examined its policies and I hope that initial doctor was not on Amelia’s team moving forward. This last post is from August. Are there any updates since the transplant happened? Did it actually happen?

  24. shirley bidnick says:

    I’m glad you are letting the negative stuff go. It is hard to do that. The hurtful words and actions of the minority can blind us to the helpful supportive words and actions of the majority, if we allow them to.

    Our children have human rights. In the past they didn’t, but since 2007 (2010 in Canada), they do. I am going to spend the rest of my life fighting for and demanding these rights for all persons with disabilities. It is the only way to silence those who want to deny the rights and freedoms of our children.

Leave a Reply

Your email address will not be published. Required fields are marked *