Feel the awesome.
09
Sep 2010
Odds
We’ve been waiting all week to hear back from our genetic counselor to find out whether or not Paxon has cystic fibrosis, and finally got the call this afternoon. I’m so sad to write that we got the news we had been dreading. Paxon does have CF. He has the same two mutations as Asher, DeltaF508. Even though we’re familiar with the mutations, and Asher has been doing so well health-wise, CF does not follow any patterns, it’s completely different for each individual, and that scares us.
I feel like we have been living on a roller coaster…a really bad roller coaster…one that we’ve rode 10 times in a row after ingesting a chili dog, funnel cake, and a big slurpie. We just ache for our boy. With all of the chromosome issues he has, and now with CF on top of it all, it just seems like a lot for a little baby to overcome.
This was really a big blow for Jeremy and me to hear. The odds of us having a child with a chromosome 4 deletion AND cystic fibrosis is so beyond my comprehension, I don’t even know how to figure that out, but I guarantee it involves a 1 followed by a lot of zeros.
We’re still not giving up on our boy, we’re just so sad for him. I wish I could just give him a big hug and kiss right now…
———
Asher. Poor Asher’s blog has turned into us venting and seeking prayer for his brother, Paxon, but I know he’ll understand when he’s reading through his memories one day. Let me just say Asher has been such a joy and a trooper these last weeks. Jeremy and I haven’t been ourselves, but besides a few tantrums here and there, he has been persevering with us and making the best of things. He’s getting so big. He’s totally potty trained now, which is a God send. He’s talking up a storm, and cracking us up with all his stories and observations. He likes to tell us stories about us going on adventures to islands, which usually involve bears in caves (friendly ones though, not scary ones), pirates, and of course big dinosaurs named green dinosaur and blue dinosaur. He loves to play football, and every time he catches it he runs around the living room while we count him down to a touchdown, he spikes the ball, and then does this touchdown dance that I have to capture on film. He knows the sounds that all the letters make (except the vowels confuse him, which is totally understandable, the English language is so confusing) and he is learning how to write his letters on his magna-doodle – he can write the letters A, C, E, F, H, I, L, O, and T. He can turn on the tv and put in a dvd all by himself – which is a big deal because our system is confusing. He hits balls pitched to him like a pro. And, tonight we were leaving and I gave him a kiss on his cheek and he said, “Ahhhhh Mommy!” and wiped my kiss off with his hand because he was embarrassed, ha! Seriously, he’s getting so big.
Jeremy took Asher to his first professional baseball game, and they had a great time together and ate a lot of fatty foods. All in all they probably watched a total of a couple of innings in their seats, because Asher wanted to walk around to check things out. He’s a busy man with a whole world to see. But Asher was certainly happy to have his daddy all to himself for an entire afternoon.
Jeremy and Asher also had a fun water balloon fight in our backyard on Labor Day. Who doesn’t love a good water balloon fight!
And, we’ve also been getting completely blessed by a certain someone or someones! I so desperately wish I could thank whoever is leaving treats, toys, and fun activities for us each morning, but I’m really hoping whoever you are you read this blog. You have been a wonderful blessing to us. You have provided us with so much fun each day. We’re not really feeling creative or fun right now, so all of your gifts have been perfect! Thank you, thank you, thank you, to whoever you are! We love you! Here’s a picture of us making the cookies you gave us :).
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The teamASHER Silent Auction
A Slice of Yesterday
This is such sad news. It is exhausting to read and discouraging to the point of being unbearable. There is no sense and there are no answers for this suffering. It is sorrowful. With each of these sad bits of news, there feels to be less hope, but faced with that, there is a stronger boldness to lay Paxon in the hands of God who is mighty and knows him and counts his days and has his purpose and will make all things new and always produce good fruit from difficulties and pain. We don’t willingly give our children to the Lord when they are so healthy. We trust in ourselves and hope in their goodness for life. But they are always in the hands of God to do as he will for his purposes that are higher. You are being prayed for and you are loved and you are beautiful with your spirit and the aroma of Christ. Praise God for your joy filled son who is precious and brings lightness to your heart and smiles to your face. He is a beautiful gift and you have poured love into him that returns to you now when you need to feel it. God will not let you break. He is a strong tower that you can trust. His word is here for you ….look he hears your heart.
My soul is deprived of peace,
I have forgotten what happiness is;
I tell myself my future is lost,
all that I hoped for from the Lord.
But I will call this to mind,
as my reason to have hope:
The favors of the Lord are not exhausted,
his mercies are not spent;
They are renewed each morning,
so great is his faithfulness.
My portion is the Lord, says my soul;
therefore I will hope in him.
— Lamentations 3:17-18, 21-24
love you four…praying more!
I think Lorraine said it all! Just as the favors of the Lord are not exhausted, the prayer of those who love you will not be either. I never in a million years that I would have to witness such pain in such close friends, it is truely unbearable. We are here for you, praying constantly. And Paxon, we love you too! Fight little guy, fight!
So sorry to hear this news Rachel. I have been thinking about you and your precious family everyday. Thanks for the update on Asher. I can tell he brings much needed smiles to you guys all the time! Stay strong and I am praying for God’s healing touch on little Paxon.
I’m so glad that Lorraine is your friend because she says the most beautiful things. I’m feeling so sad for little Paxon but so proud of Asher. He is so clever! What a blessing he is to his amazing parents! Love you guys!
Oh, Sweet Paxon. We just love you so and wish an easier road for you, Little Man. This latest blow breaks our hearts all over again and reminds us to continue to pray for your sweet life without ceasing.
And, Asher, such a smart, joyful big brother. What a blessing he is, with his huge smile & funny observations. You capture all of his joy so perfectly with your pictures, Rachel!
Sigh…My heart just broke to read about Paxon having CF too. Your lovely friend Lorraine said it beautifully. He is our strong tower…and we are praying for His constant covering over your family.
What a blessing to Asher…what a joy and love.
What I’ve learned from Paxon:
How to pray. Really pray!
How to suffer.
What love is.
What one another means.
Oh sweet friend…my heart hurts so much hearing this news. Lorraine said it all beautifully and echoed (in a much more eloquent way!) how so many of us feel right now and want to be able to communicate. All 4 of you are so loved by so many including us. Our hearts and prayers are with you.