Some days

Left DC early this morning for 2 shows. Rye was kicking butt and taking names. Now at 2:30am I’m on a train from Long Island to penn station to DC. I end this trip at 9:30am. Crazy…. Right. Some times life throws ya a couple of curve balls in a row. Fighting feelings of stress and fear probably now more then ever. Fear for my kid’s well being and fear for the future.

I wish I could honestly say that doubt isn’t part of this equation. It creeps in so suddenly. Why do I let it? I let it because I look right now instead of big picture. God has not let this play out the way Brandy or myself planned it but he continues to provide the entire time. I wish I could fast forward through all this for Rye but I know then Id miss the journey. He never lets go. EVER. Even in the dark he doesn’t. He continues to hold my baby girl in his arms even when I can’t. Why he doesn’t end the chaos now ill never know. But I trust.

We continue to lean on family and friends and they continue to blow my mind. You’ll never know the comfort you supply in these dark times.



8 thoughts on “Some days

  1. Jeremy, I pray that a new liver is found asap for your little bundle of joy. I remember when Damien, my now 4 1/2 year old son had his transplant (kidney and liver) and the kidney portion failed. I asked so many times, why? why give us the kidney if it was going to fail? why offer the hope only to snatch it back away? I still do not have answers to these questions as we sit admitted to DC Children’s waiting to get Damien ready for a second go at a kidney transplant and the fear you speak of creeps in so often. I try hard to not allow it and to focus on everything good and sweet and perfectly right with Damien and our life with him just being here and in it, but it is hard sometimes. I think it is human nature to fear what we do not know and cannot control, however as you state, God has a plan and all we can do is trust in that plan and love our kiddos every second of every minute of every day we have been blessed with them. Prayers from the bottom of my heart that Ryman’s journey is far, far, far from complete and that the new liver comes soon and stays long.

  2. We’ve never met but I feel like I know you as brothers & sisters in Christ. It is such a privilege to pray for your sweet family. You are right Jeremy, our God did not bring you this far to let you go. His perfect will is going to be done. His ways are not our ways. Hugs, Joanie

  3. J,B,&R,
    So so sorry of this news! We have no way at this time of making sense of this, but we also know that none of us r ever alone n our struggles. Sometimes the pressure of the burden becomes so great that we can barely breathe. Keep breathing, keep praying, keep hoping, keep believing, keep trusting, and keep loving. You all have come so far! Just keep putting one foot n front of the other, dont look back and wait for Plan to unfold. We r with u at this time n prayer and thought. Much love to all three of u. Much prayer for her team and all who support all three of u. Dont stop looking up and ahead.
    RB & Tila Dunn

  4. I set here in tears, wishing that I could just be there to wrap my arms around you both! I am sure that even though you love, trust and lean on God daily, you are human and the question of WHY creeps into your thoughts. As hard as we try, we do find ourselves questioning God. Frustratingly, we don’t get an answer: but if we trust and stretch our patience, God will reward us the with his gift. As soon as Jer gets back, hold each other close, feel Gods presence and know that he will continue to path Rymans journey and walk with you each step of the way. Praying for Rymans healing and for Peace of mind for you both!

  5. We continue to pray and I have rallied all of my prayer warriors on Ryman’s behalf as well. Many many many of our Urea Cycle Disorders families, and THEIR families are standing right beside you in prayer. We have passed along Ryman’s blog so that many more can join in. Stay positive, you are in excellent hands…both here on Earth and from in Heaven.


  6. We haven’t met, but our 3 month old boy also has a UCD. We are on the same path as you, just trailing a few steps behind ( we are currently waiting on a liver and will be transplanted at Georgetown) Thank you for blogging so honestly. It has encouraged me as I walk this journey. Moments of doubt are what makes us human. KNOWING that everything is in God’s hands and finding comfort and peace in that fact is what makes us his children. It’s what keeps us going when all seems lost. I pray and I shed tears for you and your little girl. I’ve also asked everyone who is praying for our son to lift up Ryman, her doctors, and both of you in prayer as well. Hopefully soon we can meet and lean on each other as our kids can go through post transplant together.

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