Wednesday, July 30, 2008

Playing Again

I awoke this morning to the pitter patter of running feet (okay, more like thunder) and Joseph screaming and laughing from a game with Allen. After many days of him mostly wanting to sit on the couch, not wanting to play or laugh or even smile much, this was truly a wonderful way to wake up. He had a very good day yesterday, too, and played a lot with Uncle Sam and David at Nana's house. We put him back on steroids and are now starting to wean him off a second time in the hopes that a slower wean will yield better results. We would love for him to be off steroids because as you know they interfere with his sleeping and eating habits and his overall mood. So, we would ask you to pray that this wean is successful and that he has no scary side effects from stopping them.
I think Holly is happy to see Joseph improve. Today I had to pull a tick off of him (which I am terrified of doing, but it was successful) and he was pretty upset about it. Holly went over to him and just held his head for a long time and kissed it, then she kissed him right on his scar and said "It's okay, Jusha, I kiss your boo-boo, too." They have started up their hilarious conversations, too. My favorite thing is that Joseph asks Holly permission to do things. He will say something and then ask, "Is that okay for you, Holly?" I keep telling him that Holly is not in charge (at least we try to pretend we are in charge), but it doesn't stop him...
I also am glad to see him happy again. When he is happy, I am happy. When he is miserable, I am pretty miserable as well. I keep wanting to hope that he will be fine and back to his normal self soon, knowing full well that he may possibly never be back to his normal self. It is a trying roller coaster to be on.
No matter what happens, I still come back to the hope that God will just touch Joseph and completely heal him and we will all give glory to God for a miracle. However, I am comforted to know that if the Lord does take Joseph home, it will be the most beautiful and glorious home he has ever known, with no sickness or pain or sorrow.
So, we are taking things each day at a time. We only have this day--everyone does. With Joseph, we are faced with his mortality more severely, but none of us is promised a tomorrow. So we are just trying to soak up every minute and find joy in the fact that we can be together and have moments of normalcy and fun.

29 comments:

Chloe said...

Gillo, you're an inspiration. Joe, fab driving! That is such a funny vid. Since Maud's return from "Stralia" every time she sees a camera she says - 'Please take a video of me' - Inevitably she chats away senselessly to the camera. I think we could set up a video library of the next generation - it's very cool to have. For the Irish readers - Maud is starting big school in September. When you ask her what class she is going into, she replies confidently and loudly: "Juniper Incidents" !!
Auntie Pauline, she loved the coat, and even on a surprisingly hot summer day, she insisted on putting it on straight away, along with the matching leggings. A big hit-Thank you very much P!
Love to you all. Chlo. XX
ps. That's a genuinely early morning Gill, it's not even midday here!

Sarah-Jane said...

great to see Joe P!! Eli noticed that he had lots more hair...I didn't even see that:) Glad you awoke to playing....love you tons.

Brea said...

What a precious boy! Praise God for good days together, and for giving you such a faith-filled heart in the midst of such a severe trial. We pray that God will continue to provide you with daily bread.

Nana said...

"This is the day the Lord has made let us rejoice and be glad in it" Thank you for that post Gillo.It is good to be reminded that we do only have this day this hour and in fact this minute.Years ago when you kiddos were little and I would get frustrated with you my Mom also" Nana" would remind me that you kids were "only on loan" to me.My Mom knew what that looked like.Christopher our little brother only lived on this earth 11 years.The anniversary of his death was yesterday.It was also my parents wedding anniversary.All to say as my Mom also said"Every day we make memories so make them fun .I never thought I listened to what my Mom said.(I thought I always knew better)In a lot of ways I have become my Mom!!!Holly-Bear is a very loving sister.She takes care of Joe P just like she takes care of those dollies She is a mini Mommy.I dont think Ive ever seen alittle so "into" her dollies she goes off into her own world and can play with them for hours.Joe P. I dont think Ive ever known a little boy so into"cars" and choo choos as you .Gillian and Allen you have two very passionate and very loving treasures.Lots of love Nana and Grandad and Davey and Sam

Anonymous said...

Gillian,

Your words are a blessing and a reminder of what is most important. Your struggling in the tension of joy and sorrow is such an example of faithful living that is only possible through God's grace.

We are so proud of you guys and the parents you are to your kiddos!

Catherine

Uncle Dave said...

Hey gill and Al,
We had lots of fun with joe and holly the other day. it is good to see that he is doing better. we will keep praying for recovery!

Margaret said...

Thanks for the heartwarming and tear jerker (as usual :)) posting. Sarah is running the show already for us, too. The other afternoon I was in my room grabbing something and I heard a loud Crash followed by insane laughter, followed by 'Do it again, Sarah!'... crash, laughter, again... etc. Oh, Boy. And yesterday I was getting Sarah out of the car and she gave me a little snuggle and I snuggled back and said 'oh, Sarah' and then Matthew says 'Sarah, we love you sooo much.' Last story- Last night we put kids to bed and about 10 min later I head upstairs and notice Matthew's door open and bathroom light on. Then I notice Sarah's door open. He is standing at her crib (no pants on, mind you) kissing her through the rails. After an admonishment to not go in her room after nite-nite, he replied 'but I didn't give her a hug and kiss goodnight'. It is really something to watch the sibling bond! Hope to bring them for a visit soon. I have a stash of TJ goodies ready for you too!

Anonymous said...

I am praying for every member of your family - for healing, for joy, for comfort, for love, for God to be mightily glorified in this. As a grandmother, I am constantly reminded of how your parents are traveling this journey with you. Nana's post today was an encouragement to me and I know she is an incredible encouragement to you, too.

Anonymous said...

that video was awesome! such a sly little move knocking that tower down, joe! great shot!

scott c.

Abbie said...

I'll be praying for the steroid wean.

It is so beautiful to read about Jospeh & Holly's interactions with each other. Kissing boo-boos and giving each other permission to do things. :-) So sweet.

-abbie

Anonymous said...

Gillian,

I am deeply touched by your moving words, and by your and Allen's outlook on life and your love for your children.

-Ange

Anonymous said...

Gillian, your writings touch me so much and my heart goes out to you all. You do have such incredible strength and I know that God has placed it there for you. I am praying that you can taper him off of the steroids and that it goes well. He and Holly soound so cute together!
Blessings and love,
Ann Lewis

Brooke said...

Gillian - your post was very beautifully written and really touched my heart. My prayers are with you guys. I hope you have very many more happy tomorrows.

With love,
Brooke

Courtney said...

Hey Gillian, I don't know if you remember me or not. You were my d-group leader in junior high at Christ Community. My name is Courtney Gaston, but I got married about a year ago and am now Courtney Moucka. Lisa Brown, who is great friends with Allen's mom (who has taught almost all of my siblings at New Hope Academy), told me about you guys and little Joseph around Christmas time. I'm so sorry to hear about Joseph's tumor. You are definitely in my prayers. I hope all is well with you guys.

Courtney Moucka

katie lazas said...

Gillian, it was great to see you and to meet Joseph.
I am amazed at the testimony you are living out daily... your beautiful strength is a witness to all that Jesus is alive in each day and has His arms wrapped so tightly around your family.

You guys are heroes!

Praying always!
Katie

Anonymous said...

Gill and family-

Thinking about you daily and keeping Joe and the family in my prayers. I'm so glad he is feeling better and being a "little boy" like he should!! God Bless you all!

Carey Heid
(SJ's friend)

Anonymous said...

Gill, Mr. Joe is so beautiful (as Holly is!) I love the video of him knocking everything down! The conversations between the kids sound hilarious. My boys (will be 2 next month) have recently begun fighting in the stroller. The grab each oterh limbs and pull. Tony actually brings Nate's arms, feet, legs, head to his mouth and bites. This all occurs as I'm pushing the double stroller saying in my deep, don't mess with mommy voice "Please, behave! DO you want a time-out?" I think both boys know it is kind of hard to have a time-out at the grocery store ! :-)
Praying for you all every day and night. We also have our church praying for your family!
Randi Booth

Anonymous said...

Your words are such an encouragement and make me both smile and cry - reading that you are living out what you believe and know is true even though there is such grief.
Thank you, Lord, for the sweet sounds of Joseph playing.
Wish we could give you all a hug,
Mel and Steve

tracey said...

Just thinking about you guys tonight. Thank you for your amazing posts and reminding us to cherish every day with have with our loved ones.
We miss you guys...
love,
the shells

Sunshine Eyes said...

I so appreciate the inspiring words Gillian. It's been a long time since I've seen you guys in Nashville, but I heard about Joe and wanted to read the latest. I'll be pray for the weaning and for years and years of tomorrows. Thanks for helping me remember to enjoy my todays... Sarah Catherine (Brooks) Wheeler

Vann and Norma said...

Early this morning I sat on my steps outside and watched about 50 St. Jude runners head down the highway. I clapped, cried, and waved at them. So thankful that Joseph is recieving the best care possible.
We are touched by the words you share and the wonderful video.
love you, norma and vann

Wrights said...

We'll be praying for this weaning to be successful and are still asking God daily to heal Joseph. It sounds like Joseph and Holly have such a sweet relationship. Siblings are the best!

Anonymous said...

Hi Gillian and Allen
I just loved seeing you all recently. Gillian you just break my heart with your honesty. I've seen you being miserable and just wish I could take over if only for one day. Even at such a long distance if I can ever do anything for you let me know. I love you all so much. Little Holly is just a darling and Joseph beats them all.
That was an amazing video I cried laughed looked again and cried and laughed. Take care, love you all Ann Ben & the boys

Christy said...

I loved your description of Holly and Joseph's interactions. Just about the cutest thing EVER.

Emily said...

I have thought about you guys several times this week, and as I just read your post I just sat here and cried. How you are reacting in the middle of this is a miracle in itself. It's great to read that Joe is running around and playing again, and I love to hear how Holly relates to him now. That is just precious. I pray for you guys all the time that God will hold you in His hands and be all that you need, and I continue to pray for Joseph's healing.
Love,
Emily

Jaime said...

Gillian,
Thank you for writing "Held". I am often paralyzed with grief over little Joe's fight, and I often wonder how in the world even God could comfort your heart. I have prayed that you would be able to be real with Him over your feelings...that you would truly be able to greive even small losses. I have listened to Held many times as I thought of you. A song by Jackopierce has also ministered to me. It is called, "May the Road Rise To Meet You."
Much love always, Jaime

nannykim said...

My prayers continue to be with you all.

jody (atlanta) said...

Thanks for another honest update. YOu truly amaze me and have so much faith and strength. I LOVE hearing that you all HAPPY for today...and enjoying each moment as a family. I pray that the weaning goes much better and Joe continues to want to play and be in better spirits. It hit me today that August and our babies turning 4...YIKES!!! I am so thankful to God for bringing you and your kids, husband into my life Gillian. We always thinking, praying and sending HUGS AND KISSES!!! Love, Jody

Kasey said...

I don't know you, I found your link on a blog friend's website. But you are a inspiration. God be with you. I cannot begin to understand your family's batter, but understand a bit of the mortality that each of us face each and every day. Just over a year ago, at age 24, I became a widow in a very sudden moment. My husband was 30 when he died of an asthma attack. God didn't give me the plan I thought my life would be, but like you said...each of us only has the day we are living in. and I try to choose to be thankful for that day and to trust Him. Looking back, it still isn't easy, but there is a plan far above me, that I know will work to my good, because I love God. the same for you dear sister in Christ.