Once upon a time...
There was a high school boy, named Matt, who often goofed off in class, didn't do his homework, and loved sports. He knew lots of trivia.
There was a high school girl, named Patrice, who focused entirely too much time and energy on getting a scholarship, had to make straight A's, was a definite nerd, and had no use for boys who goofed off in class and didn't do their homework. She knew lots of Spanish.
The boy ignored the girl. The girl thought the boy was a goof.
But in Spanish class, their teacher let them play Trivial Pursuit on Fridays. The boy and girl were a perfect pair. He knew the trivia. She knew how to translate the questions and answers. They kicked butt and took names.
After graduation, the girl went with some friends up to the mountains for their Senior Trip. The boy came too, because the two of them shared a mutual friend. When the girl heard that the boy was coming, her heart fluttered. She had no idea why, seeing as how she still thought she had no use for him. He arrived. She came down the stairs with no make-up and a towel on her head. He said, “Erykah Badu.” (The girl doesn’t know how or why she remembers that, seeing as how she never remembers anything.)
Every night, the whole group cooked dinner and ate together and played board games long into the night. As tradition required, the girl and boy had to be on the same team. It was their destiny. One night, the boy touched the girl’s knee under the table. Instantly, her heart fluttered again and this time, she knew why. He was the one for her.
The two kids - yes, they were definitely kids - dated all four years of college and were married in May of 2004.
In April of 2006, they decided they would like to soon have a baby. They tried for a year and a half to get pregnant. They didn’t really stress that it took so long and never even considered the possibility of infertility. They just put it in God’s hands and knew it would happen when it was supposed to.
In August of 2007, they finally became pregnant with their first child. They were elated and felt the timing was just right.
But their world came crashing down in April of 2008 when their first son, Gabriel, stopped moving at 37 weeks (full-term). He was born sleeping on April 22, 2008. His skin was sloughed back on his hands and feet, but the doctors and nurses said that sometimes happened when babies died in utero. After an autopsy and very general genetic testing, the pair was told that “it was just one of those things” and that there was no apparent reason their child had died. The boy and girl cried for their son and felt the deepest, most horrible pain they had ever experienced in their young lives.
The kids became adults. They learned what was really important in life. They aged, what felt like, fifty years. Their world would never be the same. They pushed on, kept their faith that God would see them through, and knew that they would see their Sweet Gabe again.
Just ten weeks later, shock of all shocks, the girl went in for a check-up and found out she was pregnant again. She didn’t know what to feel. She felt sad, scared, happy, excited, terrified, guilty, angry, elated… pretty much any emotion you could feel, she felt it. She told the boy. And every night, before bed, they both got down on their knees – from the day they found out till the day he was born – and prayed for this new life - that he would live.
On February 27th of 2009, the boy and the girl welcomed their second son, Jonah. The pregnancy had gone well, his heartbeat had remained strong. All seemed fine. But it wasn’t. Jonah was born missing most of his skin from his elbows down and his knees down. His hands, feet, knees, and elbows were completely raw and bloody. His head had purple lesions across it. He was in severe pain. He was transported to Brenner Children’s Hospital, where he was diagnosed with a very rare genetic skin disorder called Junctional Epidermolysis Bullosa. He was not expected to survive to his first birthday. Truth be told, many thought he would never make it out of the hospital. He was in horrible shape.
The boy and the girl, once again, came home from the hospital to an empty house and no baby in the bassinet. Their hearts broke all over again. And they felt the second worst pain they had ever felt in their young lives. The girl wondered if she would ever be able to breathe without it hurting. The boy was her rock and held them all together.
But GOD was at work. A huge prayer movement began for Jonah. By word of mouth, church prayer lists, a little old blog that, literally overnight, was getting 10,000 hits a day, and a MIRACLE, Jonah was being prayed for in pretty much every time zone in the world. His parents got messages of hope and encouragement, verses, and prayers from all over the country and places like Canada, China, Germany, Spain, Sweden, Afghanistan, even the United Arab Emirates (capital: Abu Dhabi… the girl remembers that from a project she did in the sixth grade… don’t ask her why.)
After 32 days, Jonah came home from the hospital. And despite all the odds, he resisted infection, malnutrition, and respiratory issues. Despite feeding issues and ultimately having to get a g-tube, he thrived at home and amazed everyone who knew him (and many, many, many people who didn’t). The boy and the girl knew how incredibly awesome their Jonah was and were so thankful to God that he had chosen them to be his parents. They thanked God for their miracle child and didn’t take one solitary moment of their time with him for granted. They knew God would use him and his story to change people’s lives. They knew that Jonah’s life was glorifying the Father and making Big Brother Gabe so very proud. They were speechless and in awe of their amazing baby boy and at all the love and support they got from all around the world.
And even though some people might not understand it, the boy and the girl knew that THEY were the BLESSED ones. And they carried on, with hope, and lived…
… happily ever after.
Wednesday, February 27, 2008
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Wow. I am sitting here bawling. I've never read this story--was it on your old blog?
You are an amazing writer and so inspirational, Patrice. Thanks for your honesty and for sharing how much you love and trust the Lord.
wow patrice. i have followed your blog for a long time and "knew" all of this... but I love the way you told this story this way. I know you dont so much think so---- but you and Matt are such an inspiration oh and yes I do love the new blog look
Just as Brenda is SO Blessed said - I 'knew' all of this, but your words and the way you tell your story have touched my heart all over again. Tears are dripping from my cheeks and I am in awe of your faith and so grateful for you for your happily ever after.
i love this. you make such a hard situation sound like a love story. i guess that it really IS a love story, afterall. you are such an amazing mom. thanks for sharing your story with us.
Well, once again I am crying at work reading your blog... What a way with words you have - what a beautiful story.
May God continue to bless your little family!
I'm a new follower. I believe in the power of prayer, and I think that it's proving that it works with your son. You have a beautiful family, and I feel honored for reading your story. You have a new follower.
O man, O MAN! I'm just a big ol' ball of tears. That was so beautiful. You guys are so beautiful. Jonah is SO beautiful. God bless you!
I just found your blog through a friends, I'm standing in my kitchen while my kiddos are eating lunch sobbing. I can't imagine a worse pain than losing a child. What a journey you have had. I'm sure we'll never meet, but I will be praying for you, your husband and your beautiful little guy. I can't even imagine the mighty things God must have in store for him. God bless you!
This story was simply amazing and inspiring. Your story is heart tugging but you know where everything lays and htat is in God's hands. I sit in awe!!
I came across your story from another mother. Oh my heart hurts and yet the joy in your faith and peace for your blessed lives. I will pray for you, and Jonah. Good luck. Kappy
I was so moved by your story! Jonah is an amazing little boy! He is so precious. God bless you guys!
Oh my goodness thank you for sharing your story. I am so sorry for your loss. I too lost my firstborn, a baby girl named Jenna, last year. God has since blessed us with a baby boy. I admire your strength, and am looking forward to following your blog.
That was beautifully written! Thank you for sharing your journey with the world. I am so touched by your faith and strength! I hope you all continue to feel encouraged in all that you do with and for Jonah!
Gosh, well, I guess we have a little something in common: I lost my baby brother Noah because something "just happened". I was so sad and angry and whatever at the whole world. Now, I know, things can be much worse. There's drug addiction and suicide and now to add to my list: your story. I'll always remember this.
Patrice... I send Matt, Jonah and you a lot of love and prayers from India! Believe in God and he will guide you!
I am new to your blog. I am amazed and encouraged by your story. Thanks for not just sharing but also for allowing God to use you to encourage others. My family also has had a rough season but we too see God's work in it. As I read your story I cried and thanked God that He is faithful. Be blessed !
Hmmm..........Something about that name Jonah! Jonah means dove in hebrew and I have found over the past 2.5 years that my Jonah has been in mty life that even through the scary times he brings with him the peace that all will be well.
I will pray for you! And I'll pray for my goose bumps to stop as well, cause boy oh boy, I can't think of anything else!
You are an amzing writer, and your story is so inspirational!
I will most definetly keep you and your family in my prayers!!
Thank you for sharing your story. Your baby is beautiful, and so are the two of you. I love the pictures of you guys kissing Jonah. God bless you in every sense. Thank you for your example and your faith.
Wow. Your story is an inspiration. I've been going through a rough patch in my life but it's nothing compared to what you have been through. Your family has such amazing faith and strength. I will be praying for you.
I just came across your blog. Your story is heartbreaking and inspirational. Thank you for sharing. I'm so sorry for your loss. I am blessed to have a one year old daughter, but just lost my son when I was 19 weeks pregnant in May. I will keep you, your husband and your sweet Jonah in my thoughts.
Sending loving thoughts your way.
What an inspiring story.
God bless you.
Just read your story, your faith is amazing, isn't God good? I am a clinical aromatherapist and would love to talk to you about essential oils that could possibly soothe Jonah's skin. Please feel free to contact me for a free consultation at wisdom4wellness(at)aol(dot)com.
What an amazing beautiful story and family. You and your family are an inspiration.
I can't stop my tears while reading your story. You're family is beautiful and your blog is really encouraging...
I found your blog accidently. You are so strong. Your son is a sweetie. I've never heard of this condition and will be researching it more. I work in the health field. It amazes me every day how strong some families are and what their able to do. You are doing a wonderful job!
Found you accidentally too...wow...amazing...tears...beautiful.
I work with an organization in Uganda called Serving His Children. A baby was brought to them recently with EB. I'd like for you to read this post and send it on for prayer to anyone who might be a prayer warrior! www.servinghischildreninuganda.blogspot.com
there aren't enough words to say how amazing you and your family must be. i found your blog through tripp, you and courtney make me a better mom, a better person.
Patrice, we are in this you join in this world to extract forward our children, I am Liz Arias Perez of peru, have one a 5-year-old baby is called Ariadne Milagros Ledesma, she has DEB and presents estenosis narrowness, needs to be produced to the briefness and this operation only they can do it in the cinncinnatti childrens and I am in Peru here there are no specialists, I ask you that pòr favor you help me contact with algun specialist to be able to travel for there and could save my daughter.
Thousand graces that god blesses,
I leave my telephone you 0051064964234054 and my mail: firstname.lastname@example.org
REGARDS OF THE PERUVIAN FAMILY
I hope people can learn more about EB. MY boyfriend and his daughter have a VERY mild case. Your family will always be in my thoughts.
So much pain for such young people. I'm so sorry for all that you've been through, but so glad you are strong enough to share how God has blessed you through it. Thank you.
This is such an amazing story. Thank you for sharing this with me!
I sat here and read your story, and yes, cried also. I, too, had a baby that was born sleeping at 37 weeks. I truly understand how you felt. I couldn't bear to be in the maternity ward around all the new moms with cries coming from their rooms. I asked the nurse if there were any unwanted babies in the hospital. Were there any mothers that didn't want to take their babies home with them? Of course, there were not, but I wanted my baby so bad and longed to take him home with us. While the other parents were rejoicing, my husband and I were planning a funeral. This happened in 2004 and many tried to convince me to get my tubes tide so this wouldn't happen again. I needed to have another child and could not give up. Two years later, I gave birth to a baby boy. God had answered my prayers. I have been pregnant 4 times and have two children. Things happen for a reason, we just don't know that reason until later down the road. Thank you for sharing your story. God bless you and your family.
Your story is very touching and your little guy is soooo cute! What a great smile! I'm just looking at your blog for the first time today and it means a lot to me. My little boy is 5 months old and also has a very very rare genetic disorder. While the issues our kiddos face are very different, our journey's are similar. Thank you for sharing!
You are a wise woman, putting your trust in GOD to guide you with your child. Nobody knows more about you and you body than GOD. I can only thank HIM for helping me and my husband for giving us the wisdom to care for Scott when he was at home. May GOD richley bless you in caring for Jonah. He is a lovely child. Gail Watkins
Thank-you for sharing your story. Sending love and prayers to you and your family - especially to your beautiful little boy and your darling angel in Heaven.
My husband went to school with a boy with a similar condition (or it may be the same, I'm not sure). Here's the link to his story - he's in his early 30's now and a motivational speaker. I hope your shared experience gives you both strength. http://www.deanclifford.com.au/Page/motivational-speakers
I am sitting here reading your story and I am trying to hold it together. I could not imagine going through what you and your family have gone through. You and your husband are so incredibly brave and strong. What an inspiration you are. Thank you for sharing your story with the world. God Bless.
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