Tuesday, March 4, 2008

Day 51!

I woke up a little fussy this morning... can you tell by my picture? Mommy called in the reinforcements and Daddy ended up with me on the couch until after Joshua and Jonathan woke up. We ended up sleeping on the couch a little bit together. Then Mommy took Jonathan to swim class and I helped Daddy and Joshua beat the chess computer twice! I know... I'm not only cute but also a genius! Yeah, I'm a keeper.
Buscia and Tom came over to visit and bring lunch to us today. We had a very nice visit... except I thought that Buscia and Joshua might come to blows over who got to hold me. Good thing for Buscia... Joshua decided to go play some more chess (or "chest" as he likes to call it!)
Me and Mommy fell asleep on the couch for a long time this afternoon. When we woke up Daddy and the boys had arranged dinner and planned a movie night. After we all ate dinner (and I threw back up some of mine) we all went and watched Mr. Magorium's Wonder Emporium. We all really enjoyed it... and I would definitely recommend it to any families in situations like ours who are preparing to deal with loss. There's some really great truths in their about enjoying every second of every day and living life to its fullest! Mommy says we may rename me to Jacob Magorium Fahmer.... but I still like "Ryan." But I do kinda look like Dustin Hoffman.... minus the eyebrows!
From a review of the movie: "Confronting his own mortality, he tells the store the only thing they can do is face the coming day with 'determination, joy and bravery.' When Mahoney takes Magorium to a clock store so they can listen to all the clocks strike 12, she breathlessly whispers they only have 37 seconds ...all they have to do is wait. Magorium corrects her, saying that it's 37 seconds to breathe, reflect, enjoy, regenerate, dream. 'Thirty-seven seconds well used is a lifetime,' he says."
We're trying our darndest to enjoy our "37 seconds!"








11 comments:

Destini said...

What an awesome reminder. You guys are very inspiring to me. I appreciate how you are making sure each day and each moment of Jacob's life is filled with love. What a testimony and what an attitude we should all have in life, whether children are healthy or not. Thanks for sharing your journey with me

Julie said...

I enjoy all of your posts, but particularly this one. It IS about enjoying every second, isn't it?
I've never been faced with a situation even close to the one your family is in, but as I have read each post that you write, I see your senses of humor, your determination, AND the fact that you aren't letting Jacob's condition to weigh your family down, but to lift them up to BE more, LOVE more, and LIVE more. What an inspiration!
Thanks for sharing.

Emily said...

How beautiful your Lord is as He shines through you....

Anonymous said...

Jacob,

Oh seeing that picture of you crying makes me want to scoop you up and hold on to you. Although, i know your mom and dad and friends and family do a great job at this but I would be so blessed to hold you but since i am hundreds actually thousands of miles away (I think)I will leave the loving arms to your parents and family. :-)
You are a constant reminder to live life to the fullest and because of your story I have went back to church just this past Sunday. I'm sure your mommy and daddy will be so blessed and happy to know how much your life has changed mine. I have been attending a bible study on Wednesday at church but NEVER go to church. It's a long story about why. I also went to bible study before church and guess what it was on??? It was on forgiveness. You are too little to go into all the details but just like the movie you saw and your precious life. I should forgive and move on because I never know when my day may come. I am blessed with 3 healthy children and that will continue to be my focus. They are so awesome.

God Bless, Jacob you and your family are always in my prayers

Jennifer in CA

The VW's said...

What a beautiful "37 seconds" you've had! Your family is such an inspiration! Keep it up! Know that you are prayed for daily! God Bless You!

knuts2knit said...

It warmed my heart to read your story. . .it restored my faith in situations like this. While holding my own 3 lb. 30 weeker on my chest in the NICU in June of 2006, across the hall, separated only by curtains, I heard a couple get the same diagnosis delivered to them by the geneticists. I unfortunately also had to hear them make the decision to admit him into a local long term care facility because they weren't prepared or willing to take care of him at home. He was such a beautiful boy and it saddened me that they wouldn't be sharing every moment possible with him knowing what they knew. Bless you and your family during the upcoming days, weeks and months while you absorb as much of him as you can. He is SUCH a lucky boy to be surrounded by such intense love. Best wishes and prayers for all being sent from Ohio-
Ellen

Anna said...

i love reading your blog, and Jacob is so precious! thank you for the reminder about "37 seconds", it's awesome! Praying for you all,

Anna in Rochester NY

Boothe Farley said...

dear karen-
i wanted you to know i got your e-mail tonight and nothing, NOTHING sounded strange or incoherent at all. i am so moved to see precious little jacob... if there is one great gift in trisomy-18 (and we both know there are actually many), it's that each baby who is affected carries in his or her features similarities to the babies who've gone before them. jacob reminds me so of copeland. and when i think of her, wrapped cozily in someone's arms tonight, content to wait on me until we are reunited again, i am comforted by looking through these photos and remembering the things about her that made me smile. that still do. what you are walking through, and what you have yet to walk through, will define you for the rest of your life, and, perhaps, eternity. i don't think that even once we are all together with the Lord we will forget these days. i think they will stand out amongst our years as some of the most glorious, the times when Jesus was most vivid. may you feel His arms around you tonight. may you know that the strength you will need for tomorrow - even for the moment after this - isn't something you can conjure. it will be handed to you, bit by bit, and sustain you, second by second. manna from Heaven came this way for the israelites.

tonight, please kiss jacob for me. not because i know him or because you know me, but because i want to kiss copeland. kiss him and know - there are so many mommies who are kissing their little ones in their hearts alongside you. and we will be the ones to carry you in these days of unknown. for now, rest in the fact that he is here, in your arms.

blessings-
boothe blanton farley

conorbootheandgirls.blogspot.com

Anonymous said...

I love to see your feisty side, Jacob - keeps everyone on their toes! Each day when I check on you and pray for you and your family, I am lifted by the Holy Spirit. You are an amazing example of living life to the fullest and making each and every day count. Love and hugs to you - Lynne B.

Jack said...

You truly wonderful family. I am in Australia. I am so glad I found your web page by looking up trisomy on u tube. Each morning I cannot get to my computer quick enough too see how your precious little Jacob is. I am in awe of your strength, and your ability to see light in a difficult situation. I have had only a glimpse of what it must be like for you. I lost a trisomy baby 17 weeks into my pregnancy she died in utero. It happened about 8 years ago now. I never really dealt with the situation. I think thats because I never got to see her,one minute there, next minute gone. No photos,no footprints or handprints, nothing. I never got to say goodbye, I never got to greive. I think I am living your journey with you. Thank you so much for sharing with the world your beautiful story, you are all in my prayers. Thinking of you all
Sharon

Anonymous said...

Jacob I check your blog every morning. I look forward to your posts everyday and your adorable pictures. I am missing you this morning. I pray that all is well!