When I play games with Lauren while Carmen sleeps on the LovSac nearby, I stop and think, this isn’t the way it is supposed to be.
When I take Lauren to get a bagel at Panera on a Saturday morning, I stop and think, this isn’t the way it is supposed to be.
When I take Lauren to the park and I am her only friend, I stop and think, this definitely isn’t the way it is supposed to be.
When Lauren runs around with her cousins, I stop and think, this is sort of the way it is supposed to be…but there is supposed to be another little girl running around with them.
When I lay next to Carmen and cover up her ears because there is too much noise around her and it’s making her jump out of her skin, I stop and think, this isn’t the way it is supposed to be.
When we watch a brilliant fireworks display and make lots of family memories together…but Carmen is at home with the nurse, I stop and think, this isn’t the way it is supposed to be.
When July 5th rolls around each year, I vividly remember the day when Dr. Tifft told us that Carmen has Tay Sachs and think to myself, this really isn’t the way it is supposed to be.
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Carmen has brought us great joy and many tears. Most days I am extremely thankful for the joy she provides. But somedays I just think, this isn’t the way it is supposed to be.
Yeah me, too.
thank you so much for sharing your beautiful perspective one this process of parenting a child with special (that doesn’t seem adequate) needs. I value your realism at this experience. You guys are an inspiring family.
Your love is amazing for just a time as this. And, you are loved amazingly.
I have felt that way for days now….thank you for your honesty. God bless:)
From the beginning of this part of your journey, from that lunch at Panera after church a lifetime ago when you first gave us a glimmer that you might be facing more than anyone could dread, I have had the same thought: This isn’t the way it is supposed to be! And that thought has recurred over and over, sometimes like a shout echoing around inside my head, loud and unfair and persistent.
And yet you go on. With faith, with love, with patience and appreciation and grace, you endure and somehow you blossom – showing the rest of us how to live even when life doesn’t turn out as we expect. No, this isn’t the way it is supposed to be — surely this isn’t the way it was supposed to be! — and yet you’re showing us how to accept and respond faithfully to whatever God has planned for each of us.
The two of you have my utmost admiration and respect for the way you are parenting your two beautiful girls. I am in awe of how you deal with all the day-to-day and long-term challenges, and I feel very blessed and privileged to be able to visit this site and witness some of your journey.
Thank you.
No this isn’t how we view things to be. God allowed this to happen I think because He knew out of all the couples in the whole entire world, you were the ones for Carmen. I think of where she would have been without you. No, it’s not the way it should be in our eyes but in God’s eyes, it’s the way is suspposed to be. Who else would love her the way you do? Who else would care for her so perfectly? Who else could she be with, other that you? Is it the way it should be? Yes and no! God chose you both in a miraculous way to be the family for Carmen. We love you all!
I think I can just say what Sarah sais “me too”. Even though I am not living the life you all are and I really can’t say I understand how you must feel, many times as I pray I find myself thinking “this is not what God created us for”, his plan was much different when he created that garden and put a man and woman there to tend it. But we all know what happened and why things are the way they are.
Praise Jesus we also know what will happen, is happening, and how things will end up for us who love our Lord. I think Paul said “keep your eye on the prize”. In this life we will have trouble, but if we endure, just think what awaits us. I know your hearts hurt for Carmen, but she couldn’t be more loved and I believe more at peace thanks to you. God bless. In Christ, Joe
Thank you Joe and Aunt Sharon for refreshing our souls with the full Truth. Carmen’s life and Dave and Lana’s love has opened my eyes to the Truth of God’s love. God has the most perfect plans and we are so blessed to be His. How can anyone survive this world without Him….. Hallelujah!!!
I am a pregnant emotional mess and am crying hysterically! Why am I so emotional?!?! Poor Carmen! I want her to run and play with Lauren so badly!