The Struggle to Survive

Ethan faces complicated circumstances. Five blisters blocking his airway forced us to intubate after he had tired out from struggling to breath. It is a miracle that his lungs and heart are still working after the struggle he has endured the last three days. The medical team is trying everything to secure the tube so it will stay in, but because of his fragile skin the tube has slipped out causing trauma to his sensitive mucosa lining and collapsing one of his lungs on two separate occasions. Ethan can not afford another improper extubation without being weaned or another infection which he is always highly susceptible to. The doctors believe if he cannot become clinicly stable by this time next week, then plans for the future of Ethan will likely come to an end and his recovery will never be realized… We are tired of being plagued by this terrible disease. There are two things I hope you take from Ethan’s hardship. One is: There are other people in this world that can use our help and if we find ourselves in the adequate position to be of service, then we should be attentive and intentional about these people in our surrounding that we tend to over look and sometimes even intentionally avoid from seeing. The second is: Physical struggles are one with our spiritual battles. We have won the battle for Ethan’s health spiritually even-though it still has not reflected in his physical health. Why have we won the battle? Because of every prayer from the children of the one true King. I have seen the chilling effects of the spiritual war. Pastor Mata, a minister from Stockton came down to Stanford on the 28th of January with a spirit lead calling to dedicate Ethan to the Lord, anoint him and pray for healing. As we began to pray in the isolated room the ministers words fell short, his face turned red as he coughed and gasped for air. A nurse was able to assist him as he stepped out of the isolation room. His intense coughing and fatigue were finally subdued after a glass of water. We are susceptible to being attacked in the physical while waging spiritual warfare. As long as we are in God’s hands we have nothing to fear. We continued on in dedicating Ethan to the Lord and we believe without a doubt that Ethan will be healed. This hopeless situation is a trial to all of our faiths. My mind holds Ethan’s entire medical history since before he was born. I know how vast the complications of his disease are and the medical possibilities. I have been alone holding my Ethan in my hand’s when his body makes one last effort to breath in all exhaustion and his chest fails to expand once again, making time in seconds feel like years. But we believe in the miracles of God. Healing in Jesus Name. We find ourselves in the desert but the Lord has beautiful promises for us. We are just waiting to unfold the greatness that he has for our family.

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21 thoughts on “The Struggle to Survive

  1. Your words and strength are so powerful I am in tears as I write. I came upon your story last night and fell in love with your precious son. I sent you a PM on Facebook. I prayed for him and your family. God’s time is PERFECT and only He knows what that is. Continue to have faith and do believe in miracles.

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  2. You are in my prayers. I can’t even begin to imagine the pain your hearts have for your child. Everytime I see his picture or read a post it brings me to tears. I shout to God and ask why this child. But I am sternly reminded that our lives our written before we drew our first breath. Your words speak to our hearts and I am grateful. Prayers for your entire family as you continue on this path. He’s such a cutie.

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  3. Dear Norma,
    I have been praying all day for baby Ethan and your family. I have been touched by your sons situation. My son was born Oct. 17th , 2014 so your sons story definitely touched at home. I can’t even start to imagine how you as a mother are feeling at this moment. I am happy to see that your faith in God is strong and enormous. Your strength has opened my eyes and pushed me back to my faith wish I had drifted from. Things happen that we can not explain but with the Lord by our side we will triumph. Your son is a blessing not just to your family but to everyone’s lives he has impacted such as mine. I will keep lifting your family up in prayers. Stay strong because you have one heck of a fighter as your son.

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  4. Jesus! God is good!…
    Many of us (your follower) are heartbroken by gorgeous Ethan’s struggle for life. We want to witness what kind of personality he will have or who he will become, but he is already bigger than any of us can imagine. It’s so crazy how in times of turmoil we get closer to God and stronger in our faith. It doesn’t have to be that way though. Ethan has revealed to me that life with God needs to be daily and constant dedication. Gosh he’s so darn precious!!! I often feel so helpless for this situation but then I quickly realize that God is in control and always turns our sorrows into joy, our number one weapon with prayer against the enemy. The enemy is furious that he can’t break you. Your faith is probably uncomprehendable to so many people because we are encouraging and supporting from the outside but you are living in the storm. I can already see how far God is going to take Ethan’s mommy and daddy. You’re wise beyond your years. Despite what our eyes see, you’re sooooo blessed. You guys were definitely CHOSEN. Gosh…. God is good! Let’s say it even when we really don’t feel it or want to because Christians know how to talk things into existence through faith. Keep leading by example. You certainly have realigned me an often remind me that my life isn’t my own, but was intended to w used for the glory of God. Lord continue to bring peace to the Cruz family. Only u can do the impossible. Be blessed!πŸ‘β˜οΈ

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  5. Praying .. πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™ Lord, you love our child as You love all children, Bring healing to our child who is not well. Stay by his side and comfort him through this trying time. Keep us ever mindful of Your loving presence Bless us with Your powerful healing and comfort us also. Thank You for hearing our prayer!

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  6. I have read stories of many EB babies. Please keep faith and don’t give up on Ethan. In the darkness of times for some of these babies they have defied the odds. I pray for your sweet son and thank you for sharing him with the rest of the world.

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  7. senor te pido por este angelito Hermoso q lo sanes y q le des a sus padres el consuelo q cada uno de ellos necesita y a sus familiares . Me rompe el corazon cada q lo miro el merece vivir seΓ±or q se haga tu voluntad y no la de nosotros Amen πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™πŸ™

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  8. Your strength and Faith are incredible and definitely inspiring! We have been and will continue to lift your precious angel up in prayer. My son, who was born last April at Lucile Packard with Dandy walker syndrome and hydrocephalus, has shown God’s promises to be true in his life. God has preformed miracles and in believing the same for you and your little one.

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  9. My heart aches for you and your beautiful family. Baby Ethan has been heavy on my heart all morning, i’ve prayed and i’ve cried… I teuly believe that God our heavenly father will do what is his will for baby Ethan. I send you a strong hug.. I send you faith, I send you my prayers… I pray and hope God does his miracle. Stay strog my beautiful sister in ChristπŸ™

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  10. Ohhh Norma as a mommy I can only imagine the pain and helplessness you are feeling.. I’m praying with all my faith for peace and healing for your whole family starting with baby’s Ethan’s physical healing. Gods good and all mighty and he can heal and bring to life the dead. I know he hears your prayer and in his time ( hopefully soon) his will will be done. And we thank God now for the healing and peace he will be give Ethan and your family. lean on god lean on your faith in him because I know as a mommy of 3 if I were in your situation, he would be all I could hold onto faith in his miracle. God bless you our love and prayers πŸ™πŸ™ in Jesus name amenπŸ’ž the church we attend is in palo alto C3SV we meet at the JCC if you ever need love and prayer please stop by sunday at 9 & 11 or you can always email Rachel

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  11. Godbless you guys .you two are a big person in Ethan’s live. Your playing a big part. Your such a great women πŸ’“ stay strong Norma Ethan will be healed in the name of Jesus πŸ™πŸ™πŸšΆπŸƒ

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  12. It is because your faith and trust in God is why you’re such a strong individual. I’m so sorry for your hardship, and you’re absolutely right that this is just a trial and God will heal. He works in mysterious ways. You will be in my thoughts and prayers. You’re and inspiration with your strength, love, and spiritual strength. God Bless you and your family.

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  13. I’m so sorry I cried and cried when I saw the video and every night I pray and pray for this little angel EB will hurt but it will never stop your little boy hopefull one day they will find a cure for EB for your sweet little angel but I will keep on praying even if he is not in my family and if he was in my family I will help and I will love him more than anything just for you and him and for his family πŸ˜‡πŸ‘ΌπŸ™ God will help

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  14. Ethan, sweet baby you are in my prayers, my grandson Reid, 8 months has just had a bone marrow transplant in Minnesota for EB, he is 59 days post transplant so I do know where you are. I know Christ is with him and his mommy as he goes through this journey and we are believing in a miracle a cure for this horrific disease. When he was born not one person we knew had ever heard of the disease so we have the responsibility to educate people and also to call them to pray for our precious children who suffer so much.
    God bless you and your child.

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  15. Your faith is beautiful and a light in this world. Stay strong. Your son is beautiful, and I pray for god’s strength in this time. He is good, all the time.

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  16. Wow wow you are a great women of God I am a mother myself and its very hard for me to see your babies pictures I’m typing this in tears because I can’t believe the strength you are receiving. I am praying for your son and for your family because thanks to Ethan’s story I found a new purpose in my life I want to help all of those children with eb by praying for them as well and once I have the means to help monetarily I shall. May the Lord bless you even more and your little angel. Ethan is a blessing.

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  17. God bless Ethan.
    May you, little man, stay in the arms of the Angels. Stay strong, continue to fight. I can only imagine your family’s heartbreak, I get weak. I will say a prayer for you as I pray for my children, may god be with You mom.

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