It is So Hard

Having a baby with chronic medical conditions has been the hardest thing I have ever done in my life.  The roller coaster of emotions, mixed with all the unknowns has stretched me far beyond myself and my own strength.  I don’t know how I could manage to do it without my faith in God, because leaning on Him and trusting Him and my faith in HIM has been the only thing keeping me going through it all.

In April we were told that our 3.5-year-old son’s rare bile duct/liver disorder was fixed after 11 surgeries and 3.5 years of struggles and battles with it.  Unfortunately, we found out this week that is not the case, as it reared its ugly head again.

More doctors.  More tests.  More ideas of what to do.  More trying this or that.  More unknowns.

We continue to lean on God and trust the truths and promises He has given us.  We continue to focus on the blessings in our lives and soak in every one of them, large or small.  We continue to love and pour ourselves into those we love even when it is hard.  And He fills us back up.

10 thoughts on “It is So Hard

  1. Hang in there Mom – and welcome to the club. My daughter was born with Spina bifida (https://en.wikipedia.org/wiki/Spina_bifida). 20 surgeries over 20 years starting at age 11 months. I could not have done it without faith, family, and Shriners Hospitals. Every time I was feeling the “why her – why me” syndrome, I would have to take her into the hospital for another surgery and then see all the other children and families of those children and realize that I am not alone and some have it a lot worse off than I. When she was under the age of 5 it was the worst because I didn’t know how to explain to her why she was different, why it hurt, and why her? Her very last vertebra is still open. It cannot be covered, capped, or repaired. If ever she backs up into something like a sharp corner of a table and it hits that spot just right, she will be unable to walk for the rest of her life. That one was (still is) the hardest to get through. I went through a ton of mental and emotional therapy (apart from the ones I went through with her), just to help me wrap my head around everything. Some days are better, some days are worse, but the best advice I can give you is “talk about it” to everyone. At first, it will be hard because you will break into tears – a lot! But it does get easier. You will get stronger. Your child will surprise you at their resiliency.

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  2. Hi, I’m so sorry about the sad, unfortunate news of your son’s condition. May your prayers be answered and his health fully restored. Your followers care immensely and send our healing prayers to you and your family.
    Rose

    Liked by 1 person

  3. Oh my, I am so sorry to hear this. I am very happy to hear that your faith has been strong through it all though. Hold onto God and his promises, not of an easy life, but that he’s there through it all with you and that even this he can work to his glory. Praying for you all and that Mr Smiles is healed once and for all.

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  4. I am so , so …sorry for your Mr. Smiles :(((( I was so happy when you posted about him being well, a while ago. I’ve been following you for couple of years, you are wonderful people and God is challenging you a lot lately. From my experience as a mother who fully vaccinated her son up to about 3 years of age, I recommend you to inform yourself about ingredients and tre truth about vaxes. After almost killing my son and listening to a ND who got his PHD in medical science and who opened my eyes, I start reading and spent thousands of hours researching THE TRUTH about vaccines. My almost 5 daughter has zero vaxes, never a needle …the healthiest child ever, never sick and her immunity is fantastig. We worked and spent huge amounts of $ to heal our boy, he is fine now , praise God. I sent you a big hug and I know Mr. S. will be well at the end.

    Like

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