November 24th 2001, the day my sweet Kenna was born. On that day, we received the diagnosis of Alobar Holoprosencephaly. Alobar being the most sever form of the condition. The other forms of this condition are, in order from most severe to least,Semi-Lobar, Lobar and MIHV.
The past nine and a half years have left many wounds on this heart. Grief of what will never be because of those two words. Grief from knowing I will never have a typical daughter, never see her go to her first Daddy daughter dance, never play dress up, never have a group of girls come and play with her, never see her get married. The emotions have come for years.
This desert daily blossoming with her sweet smiles and innocent laugh, covering up the barrenness, the lost and the sadness of what could have been. Throughout the nine years the news has always been focused on the end, and what felt like relentless news of what would only get worse.
June 14, 2011, all of that changed for the first time.
Yearly we make a trip to Dallas Texas to visit the Texas Scottish Rite Children’s hospitaland The Carter Center for Holoprosencephaly.
Each year passed with not much changing and more of a documentation than progress notes. The people at TSRH are AMAZING.
Each year they help us in any way possible and give us all the information needed relating to H.P.E.
June 14th, was just like the past 9 years. We left at 8 this morning, Kennady, myself and her nurse. While my amazing husband stayed home and took care of our sick foster daughter and my wonderful mother in law took care of our two boys.
We got to the clinic and gave them the recent CT scans Kennady had done during a trip to the E.R.
As we talked to all the specialist we went over all our concerns for her lately and what was going on with her.
She has been vomiting monthly with an unknown reason, hip pain and possible seizures. After everything was covered, we waited for the Neurologist to come in to see us.
Dr. Mauricio Delgado has been seeing Kennady the whole nine years.
When he came in he was glowing and quite happy to see us.
He asked how she was and checked her muscle tone.
He then asked me if I had seen the CT scans that I brought in. I told him I had, but I didn’t know what they meant.
He said, “she has had some amazing brain growth and there is division visible in her brain now. I believe we will have to change her diagnosis to Semi-Lobar H.P.E.”
My mind started buzzing with thoughts. Overwhelmed with emotion , I immediately began to tell myself to pull it all together. I wanted to be able to communicate and not just cry like a baby.
Dr. Delgado took me back to see the scans and compared the scans that she had in the past with the current one. He was glowing with amazement.
As I walked back into the room where Kennady and her nurse were I started to speak and then began to cry. Overwhelmed that for the first time in nine and a half years, there was a flood of joy, of good news.
I pulled myself back together after the nurse asked me if those were happy tears or sad tears and told her “happy, very happy”.
After waiting a bit, the head nurse came back in and as I started talking, I told her that I had just been crying about the news. She said “wow, I would hate to give you bad news”. (side note, the nurse is wonderful and just has a rough nature about her, there wasn’t any intention of her being mean)
I told her, “no, I can handle bad news, I have been handling it for nine and a half years. The difference is that when you are used to hearing bad news all the time,the good news is overwhelming”. “A little bit of hope in this life is huge to me and huge to a life like hers.”
After thanking everyone and saying our goodbyes, we packed up and headed home.
I decided to wait to tell Robin about the joy filled and overflowing news. I wanted to see him and him to see me when I told him.
I got home fixed supper and then told him. The tears flowed again, but once again quickly stopped.
He was amazed along with all of us. Good news is sweet honey to the soul.
As I prepared for bed I was still going over all of the thoughts. I headed to the shower and as the water fell upon my back, the tears matched the cadence of the water. Heavy and sobbing as the tears flowed freely now with joy and pain all at once.
The heartache dam was breaking and flooding this desert with the river of joy.
You see, the heartache will always be there of the things lost, that is what a desert is, however, for the first time the dam had broken with a single, heavy drop of joy, flooding this desert for the first time in so very long.
I love Kennady Leigh with every inch of my heart. She is perfect the way she is, but so much more joy I have with the good news that filled my ears today.
This doesn’t mean that Kennady will suddenly do new things, or be able to walk or talk or do anything close to what a typical child would do.
This means that there is more potential for her to make more strides. Possibly one day be able to use a communication device to communicate basic needs, etc..
So, with an overwhelmed heart I write this tonight so thankful for a God who loves me and reveals joy in the desert moments so that when the dam breaks I can reflect and see his goodness all along the way.
Kennady’s brain in 2007
Kennady’s brain 2011
This is touching and so perfect. Thank you for sharing and spreading hope and encouragement. 🙂 Love you and SO happy for the good news!!!
Wow, made me cry…every bit of good news brings a new found hope.
Commenting from my phone. The Hubs and I pray for Kenna and sincerely believe she will be completely healed one day. What a sweet testimony. God is incredible!
Dear Erika,
It has been quite a while since you wrote this, but I just read it and didn’t know this news until now. This is so miraculous! I am having trouble finding words for what I am feeling about this magnificent news.
Everyday all these years hundreds of people you know and don’t know have been making uncompromising prayers for Sweet Kennady, including me, since I met her. I focus on the word uncompromising, because that is how we must pray when faced with evidence that would cause doubt in the passerby.
We serve a God that can do above and beyond all we can think or ask. We must never let our senses compromise our faith!
I cried all the way through your article. Like you, tears of joy.
I also wanted you to know that you are a wonderful writer. How beautifully you have told your great story. And behind that wonderful writer is a Mom and a Wife, Friend, and Pastor’s Wife, all of your roles profoundly fulfilled everyday. You live the adventure of Christianity in an exemplary way. God bless you!
Love,
Marilyn
Thank you so much Marilyn for your kind words and all of your prayers!!
I cried when I read this. What awesome news for your family. 🙂
Thank you Melissa!
I am certainly not a radiologist, or one trained to read MRI’s, but that looks like a HUGE difference to me! It looks like creativity in progress. How amazing one little drop of hope can feel in an ocean full of negativity. So happy for you, and for the miracles happening in your lives each moment.
Erika, I am so overjoyed for you and your family. The love a mother has for her children is difficult to put into descriptive words, you have managed to do the difficult. May God fill your days now and forever.
This is so wonderful. I couldn’t help but cry myself to hear you tell this story as a loving family of God! Awareness and loving as one being with total faith in God can cure everything.
Once again, I am blown away and continuously overwhelmed by God’s grace and healing and love. We also have a new neurology miracle in our home, though ours is of the neuropsych nature. Thank you for sharing yours with all of us.
That is great news, Ellen!!
Ya’ll are all making me cry! Reading your story again, Erica, and all the sweet people who have responded makes my heart so thankful for a loving, caring world! It is sad that some folks don’t know about all the love & caring there really is in this world!
Thank you all from the bottom of my heart for every prayer prayed for our pastor, my son, and his precious family…and especially our little Kennady Leigh!
May Jesus bless you all beyond measure!
I can’t even imagine how this must make you feel. I’m so happy for you. The future is ripe with possibility.
My mom always said, “the doctors don’t know.”
This came up on my timehop today as I had shared it on facebook. I am so honored to know you and Kennady(and your family). I can’t descibe how reading your story has affected my life. I keep typing and deleting, I just can’t quite express it, but thank you for allowing God to use you!
Awe, Jennifer. Thank you so much for sharing that. Comments like this are fuel to our fire!
I know this post was made some time ago, but I can’t help wondering how your daughter is doing. I’m a medical student, and I was doing some research for one of my classes on the H.P.E. variations when Google led me to your site.
I was floored by the CT images you posted. It’s a truly amazing comparison, especially since at first glance it appears that there has been remarkable tissue growth and development. The scientist in me would like to see the rest of the images, for no other reason than to learn from them. The woman in me is overjoyed to know that your daughter’s long term prognosis has improved, and hopes that she is as happy now as she looks in the picture.
You have a beautiful little girl, and I wish for her nothing but the fullest and happiest life possible. I’d love to hear how she’s doing if you want to share!