No Expiration Date

Since Jude was born, I have been told many different things and asked many questions. Some being “He has a lethal diagnosis.” “You just don’t know how long you have with him.” “He may not make it through infancy.” and “Have you prepared yourself?” I have spent nearly three months pondering and facing these questions and assumptions every day.

After seeking the Lord and also believing in my son, my answer is that I have prepared myself and my heart of the reality that Jude has some things we need to deal with. We face challenges daily and the care for him is intense. Jude has a top notch medical team working with him, he has many appointments and procedures, and he is on many medications, has had two surgeries and has more in his future. He requires speech, occupational and physical therapy every week, he has cervical stenosis which requires him to wear an aspen collar and he is also on a feeding tube.

But one thing I can say is this; I do not look at Jude and see just the fact that he has RCDP. Jude having this genetic disorder does not and will not define who he is. I don’t look at him and wonder how long I have with him, I look at him and I am thankful that he is alive and well. WELL, you ask? YES, WELL! Jude may have some issues that require extra attention and he may deal with pain from time to time. But Jude is here, he is breathing, he is fighting and he will continue to fight.

So I don’t look at Jude and see his disorder, I will not find his identity in that. I look at Jude and I see a Brave Little Warrior. I will not put an expiration date on my baby. And I am so proud that he has already far beaten the ones that medical professionals tried to put on him.

I know that God is the ultimate physician; no earthly man can tell me what is going to happen. Jude has proved to be a fighter and I will continue to fight for and with him and give him anything he needs.

So no, I am not preparing for the worst. I am praising God for the best that I have already seen.

I will praise him because Jude is fearfully and wonderfully made.

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15 thoughts on “No Expiration Date

  1. Well said!Jude is a perfectly beautiful baby boy.I love seeing new pictures of your precious little boy…that is what I see….a beautiful baby boy who will soon be a handsome little toddler.Wishing your family the best!

  2. This is beautifully written, Hannah! Just as you are greatly blessed to have Jude, He is beyond blessed to have you as his mother! Always in my thoughts and prayers!

  3. Hannah, I have been following your blog and I can totally relate to what you guys are going through. I am praying for Sweet baby Jude and the both of you as it can be very taxing on a marriage, especially over time. Our daughter Grace was born with a rare and lethal form of dwarfism as well but God has a plan for her life and He has been so good to us! She is now 5 years old and thriving! His plan is perfect and we couldn’t imagine our life without her in it. Thank you for sharing your precious gift with us. Your faith is inspiring. God bless!

  4. My son Jon was born with severe physical problems. This doctors recommendation was to let him die. They said he would have no “quality of life” and that we would save ourselves years of torture and pain by letting him go. We chose to let God determine his future. Two years ago he got married to a wonderful lady who looked past his wheelchair and saw the amazing man sitting in it. They just bought a new home a few weeks ago and he just started a new Jon at TDBank. With God….all things are possible.
    Jude has a future and a purpose only God knows. All I know is, trust Him and wait on Him….and in His time, that little boy will amaze everyone.

  5. My Sweet, Dearest Hannah-
    As we know too well in our family, God has His own plan, And finds almost comic relief in doctors and specialists and our own ideas of how OUR lives should proceed… Keep your eyes up and your miracle child will continue to awe the world as God intended. Hyoid stories and your our little man has moved hearts here in NJ and PA when I simply share the updates. I’ll get private messages seeking them!! Amen, my child!! Thank you and your Beloeved for including us in your journey with our warrior!! Live you all sooooo much!!!! XoxoX
    ~ “Aunt Kelly”~

  6. With ALL that said you are fearfully wonderfully made for Jude… I’m proud of you you are a wonderful mommy. You’ve grown into a a young lady whose perfect family is wonderfully made. Your title for Jude it’s just not for him but for you & your husband as well. God knew what HE was planning from the beginning….

  7. Dear Hannah and Baby Jude,
    I’m at a loss for words to describe the emotions which I experienced less than 24 hours ago as I came to be introduced to you and Baby Jude via a past fellow worker and still good friend of my wife Kelly Conrad, namely your beloved cousin Ginger Wolford. I devoured through all of your blog postings since February 1. Then I spent some time in Baby Jude’s Facebook page. I know your path has been extremely challenging, and the choices at times agonizing. Yet I praise the Lord for how you have turned to Him for wisdom. I marvel at how you have made a determined effort not to allow your baby to become a label, a statistic, a disease or a disability. How you have come to accept him AS HE IS. How you accept your Baby Jude as a perfect gift from our loving God. I marveled as I read the conviction that began to grow, how God may have prepared you for this very moment in time, when in the past you thought of taking in children with special needs.
    Maybe sometime through Ginger I might be able to acquaint you with my journey. But suffice it to say that in the wee hours of the morning, as I said, 24 hours ago, your witness and experience acted like a lightning bolt from heaven above directly into a worn out heart, made weary from fighting for the last 20 years with what is now known as Transformed Chronic Daily Migraines. I’ve known Jesus for more than 43 years, not only as Lord and Savior, but as my best friend. But this former pastor of 11 years, and spiritual lay leader for another 20+ years, this warrior for God had become battle weary from the constant barrage from the enemy.
    So you see, Baby Jude has already made his mark, as have you, to renew my spirit, to restore in me a renewed vision. God has used you both to help me again climb up to the mountain top. And once again see the Promised Land of God’s promises.
    And rest assured that from this day forward, you, your husband, and Baby Jude, will have another partner, another prayer warrior in the good battle of faith, as we seek to journey up the narrow path into God’s glorious kingdom. So next time you hold Baby Jude, please wisher for me into his little ears that God is already using his very young little life to change lives. And that even though I don’t yet know him in person, I love him and his mommy dearly.

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