2013-05-16 14:48:01 by Sarah Sanford, Patient Family, as posted on the inside.akronchildrens.org blog.
I was asked to submit a piece for committee consideration - a talk, a nugget of "my story" for an upcoming event. I wanted to - really wanted to, but I could not fathom speaking, intelligibly, about the little man and his big sister. I could barely write the following without crumbling into tears. Long story, not so short, I chickened out. But if I had the nerves of steel I pretend to, here is what I'd say.
My kids, Jane and Jude, are the most amazing creatures alive. We came together as a family via domestic adoption. It’s been a journey. They are full biological siblings living under the same roof.
We adopted Jane first, in 2007, and had decided not to pursue adoption again following her homecoming. My husband insisted we were a complete family. I silently protested. However, both signatures are required to finalize, so I accepted our family of 3, grateful for all we had.
Then our social worker called on Dec. 23, 2009. Jane’s birthparents had delivered a baby boy and wanted us to bring him home. I shouted, "YES!"
Fast forward to 3 months of foster care. Their birthmother forgot to dot a few I’s and cross a few T’s. We had to be patient and wait for our boy. It was an excruciating time. Finally, he came home in March of 2010.
Instantly, it was clear Baby Jude needed some medical professionals in his young life. Call it mother’s instinct, call me a control freak. Call me whatever you’d like. I knew in a flash something was wrong.
The uncertainty in our journey to Jude became a reality when Baby Jude’s medical and developmental diagnoses came rolling in.
Baby Jude's developmental and medical challenges are tough. I’ve rearranged my entire life to make his challenges as UNchallenging as possible. Everything has changed. Budgets have been adjusted. Job searches now occur any time of day or night. Hospital parking passes are bought in bulk and paperwork is my new middle name. Other than keeping up with my Jane, Baby Jude's needs have become my entire life. And I would not have it any other way.
It is my privilege and honor to help make his way. But truth be told, in the beginning, I was scared. However, I didn't give up. I didn't give up because he wasn't giving up. Baby Jude was an infant, spending countless hours in the hospital, outpatient therapies, evaluations - with people way smarter than me trying to help him - and he wasn't giving up. I didn't give up because Baby Jude didn't give up, and still hasn't.
Nothing comes easy for him, so why should I find an easy way out? Not going to happen. Not giving up. We are in this together, for better or for worse, for as long as it takes and regardless of the outcome. I think that is called faith. I have faith in Baby Jude.
It is also why I have taken the lessons from Baby Jude to the blog world - to help other families who raise children with disabilities.
I write to emote. I write because he is amazing and his sister is hilarious. I write in support of the hospital and the county board that support Baby Jude. I write because it's cheaper than therapy and there is only so much wine in the world!
I write because if someone was writing when I started this journey with Jude, I may have been less scared.
In the past, almost 2 years, I have learned how to live the rest of my life, courtesy of these 2 amazing kids. My Jane and my Jude. I have learned to be grateful, prayerful and hopeful.
I am grateful to Jane and Jude’s birthmother. I can’t change the fact that Baby Jude drank wine in the womb, that he suffered a stroke in there and now has cerebral palsy, hemiparesis (muscle weakness on one side of his body), low vision, sensory processing disorder and much more.
I can’t change the fact that he never received prenatal care, which may have prevented his torticollis (a twisted neck) and severe plagiocephaly (flat head syndrome). I wasn’t a part of Baby Jude’s fetal experience, but I am grateful to be a part of his life now.
The craniofacial center at Akron Children’s Hospital has reshaped his skull. Constant therapies have worked out that kink in his neck the docs call torticollis. He has spent more than 20 hours per week in the hands of expert MDs, physical therapists, occupational therapists, speech pathologists, neurologists, low vision specialists, etc., for a year and a half.
Many adults don’t put in the "work week" that Baby Jude does. And the boy whose prognosis of possessing “a potential for walking” 1 year ago? He walks now. He has ditched his gait trainer and his walker. Pinnochio has become a "real boy," taking real steps.
I am grateful to their birthmother, because she gave my husband and I something we could not give one another - a chance to parent. And even though there are many things I’d have done differently if I had been with Jane and Jude from their starts, I am grateful to see them through until the end. I will always be grateful for their birthmother.
I also became prayerful -humble, good old-fashioned, Bible-reading prayerful. It’s been a good lesson for me, a good idea, if you will. Because, whomever you pray to - be it God, Allah, Buddah, JC, some other supreme being, or glitter-eating unicorns - eventually even the deepest doubter will pray.
I promise you, there will come a time in your life that you will wipe a tear, drop to your knees and call out in prayer. The journey with Baby Jude has brought me to my knees in prayer countless times. I am prayerful.
I now thrive on living hopefully. I hope every day for the next milestone Baby Jude may meet, for some words from him, for his independence. I hope higher than the sky and wider than the world for both Jane and Jude. I hope to instill that same hope in them as they grow, enjoy achievements and face disappointments. I am hopeful.
The irony of all of this, of my journey to Jane and Jude, is that it took 2 individuals I never gave birth to, to give me a rebirth. What I had before was a life. What I have now, it started with Jane and was solidified with Jude. It's the realization of how to live.
Grateful, Prayerful & Hopeful.
Read more about Baby Jude and Jane from the rest of Sarah’s blog posts.
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