This will be super short because Jonah has just gone to sleep (in the crib!), and I'm going to try to sleep when he sleeps.
The hoarseness has not gotten any worse, and seems to be only when he cries or is doing something where he's pushing more air. He's mostly silent now as he sleeps. He's taking three to four ounces of Pedialyte by mouth every few hours and seems to be tolerating it okay. They still have that drain thingy on his stomach, but we are clamping it shut for an hour and a half with each feeding, and it seems he is able to absorb more and more each time... which is good. Right now he is just on clear fluids (through his IV and what he wants by mouth), but I think tomorrow we will start with formula.
Tomorrow the g-tube education begins. I'm a little apprehensive, but know it will become the "norm" just like everything else has.
Matt has gone home for the night per my insistence. The bed is TINY here, so it was either we both cram in the bed (skinnier than a twin) and neither of us sleep, one of us in the bed and one in the "recliner" (being very generous with that description), or both of us trying to get decent sleep by each being in a bed. He'll trade off with me tomorrow night if I let him, but that will all depend on how Jonah's doing. If nothing else, I'll go home tomorrow while others are here and sleep a few hours.
Prayer requests for tonight/early tomorrow:
- that Jonah will sleep (and be allowed to sleep) through the night.
- that the morphine will work at keeping him pain free overnight.
- that we can get this IV and drain thingy out AS SOON AS POSSIBLE. (Every time he moves I'm cringing, afraid he's either going to pull his IV out, thus hurting his skin or going to pull on the tube, thus hurting his skin and his incision site).
- that he will not roll on his tummy during the night (fat chance)... not because of the g-tube button but because if he rolls over on that drain (sorry for not knowing what it's really called), it may hurt his incision site and/or his skin from rolling on top of it.
Thanks for all the prayers. I'll try to update as I can but tomorrow will be crazy with rounds and dressing change etc. I will try to do quick updates on Twitter (right sidebar) if I don't have time to sit down and post.
Thursday, April 29, 2010
tough guy
This is one tough and resilient little guy...
... but once in a while, even tough guys have to take a snooze on their Granny.
Things are still okay. Jonah just had some morphine about an hour ago and did seem to be in some pain. He's still sleeping this way now. His "voice" is very raspy, so we're trying to decide if this is the normal "I was just intubated" sort of raspiness or if he's having some airway inflammation and/or blistering. Please continue to be in prayer for that issue. It's the thing we've been most concerned about since we started thinking about this decision months and months and months ago.
update
Sweet Jonah is doing well. He was so tired, but, after some Tylenol, was playing and smiling in his room. Matt finally got him to sleep, and this is what he's up to as we "speak"...
The surgery went well, and when I went back to wrap his torso after they were done, it appeared there was only a tiny bit of blistering around the incision site. It wasn't even enough to drain at the time. I haven't taken the Lite (bandage) off to look at it since, but I've tried not to mess with him too much. If he acts okay when he wakes up, I'm going to try to take a better look.
I got to go in and help with securing the IV, pulse-ox, and leads. Actually, the doctors were gracious enough to let me kind of lead that process, and I did pretty much everything but the actual IV. They were WONDERFUL, especially Dr. S, our anesthesiologist, who happens to be a former Young Lifer. :)
This is me between prep and the post-op rewrapping. I came out to wait with the family during the actual surgery. They would have let me stay the whole time, but I didn't want to be in there for the cutting.
Flattering photo, huh?
While the anesthesiologist was finishing up and the surgeon was waiting to start, I kept asking him (the surgeon) if he watched doctor shows and what he thought about Grey's Anatomy. I also cracked some (inappropriate) joke about Grey's, saying something like, "Hey, when we run out of plot lines, we'll just make them have sex in the on-call room." And in my head the whole time I was saying to myself, "Self, just SHUT-UP. Seriously, stop talking now."
What can I say? I joke around when I'm nervous.
But seriously, it was a great experience all the way around, and the only reason I was smiling like that is because of all your prayers and how incredibly AT PEACE I felt. Don't get me wrong, I was crying on the way to the hospital and completely lost it while holding Jonah as he got loopy and started to giggle because of the drugs. But when we went to that OR, it was like a peace washed over me, I went into "get 'er done" mode, and everything went so well. I know that the peace I felt and my ability to remain unemotional (or low emotional anyway) was straight from God.
But enough about me. Jonah has come through, so far, like a champ and is doing well. He's been fussy some, but has also smiled and played. He's sleeping peacefully in Daddy's arms. His breathing seemed pretty raspy to me before he fell asleep, but I think it might have just been that he was overly tired, because his breathing sounds pretty good now, while he sleeps.
Some of you like specifics to pray for so here they are:
- for his trachea and breathing; that no damage was done during intubation
- for any blistering or irritation that may occur around the button
- that he won't rip his IV out (which is in the top of his foot)
- that he can have a peaceful night's rest (he really needs it)
Baby J's waking up now, so I better run. Thanks again for all the love and prayers.
Oh, and I also wanted to say a HUGE thank you to all the EB parents/friends who helped me get that list together. It was compiled from all their suggestions they sent me through email. You guys are so awesome, and today would not have gone as well as it did without you, not even close. Thank you for helping me help Jonah. Love you guys so much!
The surgery went well, and when I went back to wrap his torso after they were done, it appeared there was only a tiny bit of blistering around the incision site. It wasn't even enough to drain at the time. I haven't taken the Lite (bandage) off to look at it since, but I've tried not to mess with him too much. If he acts okay when he wakes up, I'm going to try to take a better look.
I got to go in and help with securing the IV, pulse-ox, and leads. Actually, the doctors were gracious enough to let me kind of lead that process, and I did pretty much everything but the actual IV. They were WONDERFUL, especially Dr. S, our anesthesiologist, who happens to be a former Young Lifer. :)
This is me between prep and the post-op rewrapping. I came out to wait with the family during the actual surgery. They would have let me stay the whole time, but I didn't want to be in there for the cutting.
Flattering photo, huh?
While the anesthesiologist was finishing up and the surgeon was waiting to start, I kept asking him (the surgeon) if he watched doctor shows and what he thought about Grey's Anatomy. I also cracked some (inappropriate) joke about Grey's, saying something like, "Hey, when we run out of plot lines, we'll just make them have sex in the on-call room." And in my head the whole time I was saying to myself, "Self, just SHUT-UP. Seriously, stop talking now."
What can I say? I joke around when I'm nervous.
But seriously, it was a great experience all the way around, and the only reason I was smiling like that is because of all your prayers and how incredibly AT PEACE I felt. Don't get me wrong, I was crying on the way to the hospital and completely lost it while holding Jonah as he got loopy and started to giggle because of the drugs. But when we went to that OR, it was like a peace washed over me, I went into "get 'er done" mode, and everything went so well. I know that the peace I felt and my ability to remain unemotional (or low emotional anyway) was straight from God.
But enough about me. Jonah has come through, so far, like a champ and is doing well. He's been fussy some, but has also smiled and played. He's sleeping peacefully in Daddy's arms. His breathing seemed pretty raspy to me before he fell asleep, but I think it might have just been that he was overly tired, because his breathing sounds pretty good now, while he sleeps.
Some of you like specifics to pray for so here they are:
- for his trachea and breathing; that no damage was done during intubation
- for any blistering or irritation that may occur around the button
- that he won't rip his IV out (which is in the top of his foot)
- that he can have a peaceful night's rest (he really needs it)
Baby J's waking up now, so I better run. Thanks again for all the love and prayers.
Oh, and I also wanted to say a HUGE thank you to all the EB parents/friends who helped me get that list together. It was compiled from all their suggestions they sent me through email. You guys are so awesome, and today would not have gone as well as it did without you, not even close. Thank you for helping me help Jonah. Love you guys so much!
g-tube surgery updates
9:30 am - Jonah is in recovery. Everything went well! Patrice and Matt are with him right now.
8:45 am Finshing up the surgery. Everything has gone very well. Patrice just went back to the OR to re-wrap Jonah.
7:50 am - Jonah is successfully (and safely as far as we know) intubated, with leads, pulse ox, and IV EB-safely secured. I (Patrice) was back in the OR for all of that, but sat in the corner and didn't watch for intubation. Everything looks really good so far, and I assume surgery has just started. Please continue to be in prayer for sweet Jonah. We sure do love that kid.
8:45 am Finshing up the surgery. Everything has gone very well. Patrice just went back to the OR to re-wrap Jonah.
7:50 am - Jonah is successfully (and safely as far as we know) intubated, with leads, pulse ox, and IV EB-safely secured. I (Patrice) was back in the OR for all of that, but sat in the corner and didn't watch for intubation. Everything looks really good so far, and I assume surgery has just started. Please continue to be in prayer for sweet Jonah. We sure do love that kid.
Wednesday, April 28, 2010
surgery tomorrow
This cutie...
Actual surgery will probably start around 7:30.
I'd ask you to pray but I know you already are because you are awesome like that.
I will most likely be back in the OR helping out, but Matt will try to update the blog, assuming we have Internet access.
Thank you for keeping us in your thoughts and prayers.
Tuesday, April 27, 2010
eb fundraiser
Just wanted to do a quick post to let you know about a fundraiser going on this weekend to raise money for EB research. There is a walk going on in the Cincinnati area to raise money for the Epidermolysis Medical Research Foundation in honor of a three year old little boy, Carson, who has RDEB.
Here is an article about it that appeared in the Cincinnati paper, and the website for the walk is www.walkforeb.org.
If you would like to donate, you can do so at the event or you can mail donations to:
Walk for EB
P.O. Box 531074
Cincinnati, Ohio 45253.
Checks should be made payable to: EB Fund.
Hope all you Cincinnatians (is that right?) can make it out and that the rest of you who are able might consider mailing in a donation.
Many thanks, as always. :)
Here is an article about it that appeared in the Cincinnati paper, and the website for the walk is www.walkforeb.org.
If you would like to donate, you can do so at the event or you can mail donations to:
Walk for EB
P.O. Box 531074
Cincinnati, Ohio 45253.
Checks should be made payable to: EB Fund.
Hope all you Cincinnatians (is that right?) can make it out and that the rest of you who are able might consider mailing in a donation.
Many thanks, as always. :)
what i've been up to...
This is what I've been doing today -
General Instructions –
DO NOT USE ANY TAPE OR ADHESIVES ON HIS SKIN.
Do not use Latex gloves.
Lubricate gloves with Aquaphor or similar lubricant.
Vitals need to be taken over bandages or wrap Transfer (T) or Conco (roll gauze) over his arm first.
Do not rub him when picking him up. Do not pick him up under his arms. Scoop him up instead.
Move him by lifting, NOT SLIDING.
Do not rub alcohol (or anything else) on his skin. Dab lightly instead.
Pad the table. (egg crate or sheepskin?)
Lubricate anything that will come into contact with his skin.
Heavily lubricate his eyes.
Pulse Ox –
1. For VELCRO kind – wrap Conco (roll gauze) on digit or place small Transfer strip (T) or square on skin and Velcro over bandaging. If it won’t register and is soft material, may can go straight on his skin – lubricate skin first. Should not rub.
2. For CLIP kind - wrap Conco (roll gauze) or place small square or strip of Transfer (T) around finger/toe first and then clip on.
3. For ADHESIVE kind –
Remove any sticky part.
Lubricate skin or probe.
Place thin Kleenex or Conco on skin.
Place probe on top of Kleenex or Conco.
(Can possibly go directly on skin if it won’t register over Kleenex or Conco.)
Secure with square of Transfer (T) or Lite (L) or Lite Border (LB) or Conco (roll gauze).
OR
Wrap light layer of Conco (roll gauze) and put probe on top. Tape probe down to Conco (NOT skin) or wrap more Conco on top to secure.
IV –
1. DO NOT suture IV unless absolutely necessary.
2. Secure IV after he’s sedated. (LUBRICATE mask well or just hold mask over face, not touching skin.)
3. DO NOT RUB his skin or let catheter touch his skin.
4. After it’s in, wrap Transfer (T) around arm underneath the IV catheter. Use the Mepitac tape (M), Conco (roll guaze) or Tubifast (stretchy tubular cloth) to secure catheter to Transfer.
5. Mepitac Tape (M) -but only Mepitac- can go on his skin if necessary. Please let me remove or remove slowly and carefully. If edges are stuck, use Aquaphor to release.
6. ONLY TAPE THE IV TO THE BANDAGES.
7. DO NOT PUT TAPE ON SKIN.
8. If for some reason you must put tape on his skin, ONLY use the MEPITAC tape I’ve provided.
9. Let me remove any EB safe adhesive from skin. I have special spray that will help remove it.
Leads –
1. Remove adhesive.
2. Lubricate skin where lead will touch skin if lead will still register that way. (ultrasound gel?)
3. Cover with squares of Lite Border (LB), Lite (L) or Transfer (T). (They are EB safe adhesives.)
4. You can also wrap Conco (roll gauze) around his chest over the Transfer if you need more security. DO NOT WRAP TIGHTLY. If they dig into his skin, he will blister.
5. REMOVE GENTLY AND SLOWLY. You can “soak” off bandaging with Aquaphor under edge or with water. Do not pull off quickly or his skin will tear.
After Surgery:
1. Only remove what you have to. If anything is stuck to his skin that can stay on outside of the OR, please let me remove it.
2. Put piece of Lite (L) around the stoma, under button, so tube will not lay directly on his skin.
3. Extubate him before he wakes up. Go slowly and gently.
4. All limbs and torso (as much as possible) need to be rewrapped before he wakes up or his general movement will cause him to blister himself.
PRIVATE room.
Reverse Isolation.
Trash to be left outside, so custodial staff does not enter his room.
OWN vitals equipment, to reduce infection risk.
Low dose steroids to reduce inflammation in airway?
Anti-nausea meds?
I still have to cut and label all the individual bandage pieces and put them in corresponding bags labeled Pulse-Ox, IV, Leads, and Post-Op.
Why do I feel the need to explain or rationalize my control issues?
EMBRACE THE CRAZY, people. Embrace the crazy.
General Instructions –
DO NOT USE ANY TAPE OR ADHESIVES ON HIS SKIN.
Do not use Latex gloves.
Lubricate gloves with Aquaphor or similar lubricant.
Vitals need to be taken over bandages or wrap Transfer (T) or Conco (roll gauze) over his arm first.
Do not rub him when picking him up. Do not pick him up under his arms. Scoop him up instead.
Move him by lifting, NOT SLIDING.
Do not rub alcohol (or anything else) on his skin. Dab lightly instead.
Pad the table. (egg crate or sheepskin?)
Lubricate anything that will come into contact with his skin.
Heavily lubricate his eyes.
Pulse Ox –
1. For VELCRO kind – wrap Conco (roll gauze) on digit or place small Transfer strip (T) or square on skin and Velcro over bandaging. If it won’t register and is soft material, may can go straight on his skin – lubricate skin first. Should not rub.
2. For CLIP kind - wrap Conco (roll gauze) or place small square or strip of Transfer (T) around finger/toe first and then clip on.
3. For ADHESIVE kind –
Remove any sticky part.
Lubricate skin or probe.
Place thin Kleenex or Conco on skin.
Place probe on top of Kleenex or Conco.
(Can possibly go directly on skin if it won’t register over Kleenex or Conco.)
Secure with square of Transfer (T) or Lite (L) or Lite Border (LB) or Conco (roll gauze).
OR
Wrap light layer of Conco (roll gauze) and put probe on top. Tape probe down to Conco (NOT skin) or wrap more Conco on top to secure.
IV –
1. DO NOT suture IV unless absolutely necessary.
2. Secure IV after he’s sedated. (LUBRICATE mask well or just hold mask over face, not touching skin.)
3. DO NOT RUB his skin or let catheter touch his skin.
4. After it’s in, wrap Transfer (T) around arm underneath the IV catheter. Use the Mepitac tape (M), Conco (roll guaze) or Tubifast (stretchy tubular cloth) to secure catheter to Transfer.
5. Mepitac Tape (M) -but only Mepitac- can go on his skin if necessary. Please let me remove or remove slowly and carefully. If edges are stuck, use Aquaphor to release.
6. ONLY TAPE THE IV TO THE BANDAGES.
7. DO NOT PUT TAPE ON SKIN.
8. If for some reason you must put tape on his skin, ONLY use the MEPITAC tape I’ve provided.
9. Let me remove any EB safe adhesive from skin. I have special spray that will help remove it.
Leads –
1. Remove adhesive.
2. Lubricate skin where lead will touch skin if lead will still register that way. (ultrasound gel?)
3. Cover with squares of Lite Border (LB), Lite (L) or Transfer (T). (They are EB safe adhesives.)
4. You can also wrap Conco (roll gauze) around his chest over the Transfer if you need more security. DO NOT WRAP TIGHTLY. If they dig into his skin, he will blister.
5. REMOVE GENTLY AND SLOWLY. You can “soak” off bandaging with Aquaphor under edge or with water. Do not pull off quickly or his skin will tear.
After Surgery:
1. Only remove what you have to. If anything is stuck to his skin that can stay on outside of the OR, please let me remove it.
2. Put piece of Lite (L) around the stoma, under button, so tube will not lay directly on his skin.
3. Extubate him before he wakes up. Go slowly and gently.
4. All limbs and torso (as much as possible) need to be rewrapped before he wakes up or his general movement will cause him to blister himself.
PRIVATE room.
Reverse Isolation.
Trash to be left outside, so custodial staff does not enter his room.
OWN vitals equipment, to reduce infection risk.
Low dose steroids to reduce inflammation in airway?
Anti-nausea meds?
I still have to cut and label all the individual bandage pieces and put them in corresponding bags labeled Pulse-Ox, IV, Leads, and Post-Op.
And pack four days of bandaging supplies.
And pack everything else.
Don't be surprised if you don't get a lake post from me until Christmas.
I emailed all this info to the surgeon and anesthesiologist and felt the need to end the email with: "I'm not crazy and overbearing although it may seem like it. :)"Why do I feel the need to explain or rationalize my control issues?
EMBRACE THE CRAZY, people. Embrace the crazy.
Sunday, April 25, 2010
thank you
Matt, Jonah, and I went to spend some time this weekend at Smith Mountain Lake in Virginia. His work has a condo there that employees can use for free, so we decided to take advantage of it for Gabe's weekend. More to come about that later in the week.
Tonight I just want to say THANK YOU for all the prayers, thoughts, and sweet comments this weekend as we remembered our sweet Gabe. I've told several people that it was so much harder this year than last. As Jonah gets older and learns, explores, and does more and more, I fully realize what I'm missing out on with Gabe. And last year I think we were just running in survival mode, and I didn't even have the opportunity to really FEEL anything. But this past week, friends, I have felt it. And it hurts. We buried our sweet boy two years ago today. Every day from April 20th until Mother's Day seems to be another sad memory.
I also just wanted to say a special thank you to Sara, who sent me these beautiful photos she took at the Hanauma Nature Preserve in O'ahu, Hawai'i.
Thank you, Sara. They are breathtaking. (And also, I'm a little jealous.)
Love you all,
Patrice
Tonight I just want to say THANK YOU for all the prayers, thoughts, and sweet comments this weekend as we remembered our sweet Gabe. I've told several people that it was so much harder this year than last. As Jonah gets older and learns, explores, and does more and more, I fully realize what I'm missing out on with Gabe. And last year I think we were just running in survival mode, and I didn't even have the opportunity to really FEEL anything. But this past week, friends, I have felt it. And it hurts. We buried our sweet boy two years ago today. Every day from April 20th until Mother's Day seems to be another sad memory.
I also just wanted to say a special thank you to Sara, who sent me these beautiful photos she took at the Hanauma Nature Preserve in O'ahu, Hawai'i.
Thank you, Sara. They are breathtaking. (And also, I'm a little jealous.)
Love you all,
Patrice
Friday, April 23, 2010
eb awareness public service announcement
This Public Service Announcement will air on Discovery Health in June for the EB Patient Care Conference and again in October for EB Awareness Month. It's very well done.
And Jonah makes an appearance at the nine second mark, on the left. We had no idea he was in it until we just now watched it...
I also wanted to mention that we lost another JEB baby this week. His name was Owen, and he was only five weeks old. Courtney wrote about him here and here. He was actually born at the same hospital Tripp goes to, and Courtney had the honor of meeting him and his parents. He got a blood infection and just couldn't overcome it.
We are desperate for a cure. How many more will we lose before we get our miracle?
Thank God Owen is pain free now. Completely restored and PERFECT!
Thursday, April 22, 2010
gabe
Dear Gabe,
My heart is heavy as I sit down to write this letter to you. Another year has passed, another year without you. Today you would be two years old. I can’t believe it. You would be walking and talking and probably running me ragged. I would be the luckiest mommy in the whole world to have you here. I miss your warmth, your weight in my arms, your sweet face, your long dark hair, the feel of your skin on my finger tips, everything about you – everything I got to see and know, and all of the many, many, many things I didn’t.
I think, in many ways, it’s just getting harder. I see the new things Jonah is doing every day. I see his smile, hear his laugh, watch as he experiments with new sounds, clapping his hands, learning to crawl. And although I find joy in all the things he’s getting to do, I look at him and see all the things that I missed out on with you. Sweet Gabe, I ache for you.
I remember clearly the couple hours we got to spend holding you, touching you, seeing you for the first and last time. I remember joking about your mullet hair, your Grandaddy saying you were built like a football player – lean figure and broad shoulders (just like your dad, I might add), singing to you, and telling you goodbye.
I remember the day we buried you in the bright sunshine by the pond. I remember how when we first buried you, Daddy would leave bread by your spot so the geese would come keep you company. I remember Nana spending time with you in the early mornings. So much about those days is a blur and yet so much is astonishingly clear. I try to think about the joy and happiness more than the sadness – where you are and what you are doing now, how you felt no pain, how you went straight to Jesus… But sometimes, Buddy, sometimes those hard moments sneak in – the moment we found out you were gone, walking across the hospital parking deck toward the front doors, knowing I would have to deliver you but never get to see you open your eyes, having to let you go for the last time. Sometimes it’s too much to bear. There are nights I still lay my head on Daddy’s chest and cry for you, long for you and mourn for you just like I did the moment we found out you were gone. The selfish part of me screams, “I want you back!”
But the unselfish part of me whispers gently, “I would not bring you back if I could.”
I can’t lie, Gabe. You took a piece of me when you left. I will never be whole this side of Heaven. Very soon I’m coming for the piece of my heart that you stole. I know you are holding it for me. But I also know you are not waiting. What is time to you? Every day you spend with God, Jesus, the angels, our friends and family who’ve already entered the gates. I know you know me and you know my love, but you do not miss me. And I’m so glad about that. I don’t want you to live your life in need or want or yearning. And the beauty is – you don’t have to. You live completely fulfilled, joyously happy, never lacking. Your life is perfection. And when I do finally make it to Heaven, you will look up, blink, and say, “Oh, there you are,” as if I’ve just stepped away and come right back. And guess what, Baby Gabe, we’ll have ETERNITY to hang out and play and run and jump and sing – we can do anything you want. You’ll have had a head start, so you can show me all the best stuff and take me to the coolest places. And best of all, we’ll get to rest at the coolest place there ever was – the feet of Jesus.
Daddy and I were talking a couple nights ago about you being in Heaven. I told him that for some reason I picture you as a four or five year old boy, being crazy and wild and running all over the place. I don’t know why. And I don’t know what you really look like now, but I do know that I’ll recognize you. And over and over and over again I imagine the moment I hear, “Well Done,” and I enter the gates, and there you are. And you’re holding Jesus’ hand, but his eyes stare into mine, and he squeezes your hand, and lets go. And you run to me, and I squat down and grab you into my arms, and I hug you so tight and just breathe you in. And we laugh till we cry and spin in circles. And you say, “Oh, there you are,” and I say, “I’m here to stay.” And then you introduce me to Jesus. And even though I’ll be officially meeting him for the first time, it will feel like we’ve been together forever, and it will be the dream I’ve wanted for so long.
Come, Lord Jesus.
I hope you know how much I love you. I hope you can feel my love and that it’s just icing on your Perfect. I know you are happy and healed and free. And I am so thankful. But I miss you and tears roll down my face thinking of all the things we’ll not do here on Earth. But I hold onto hope and the promise that I’ll see you again. Daddy, Jonah, and I just can’t wait to finally all be together as a family with you. Please know that we love you, pray for you, and each day we live is one day closer to you.
And don’t worry. We certainly aren’t living all mopey and sad down here. Don’t get me wrong, there are moments full of anguish and terrible sadness. But we cling to the joy and the hope and the promise, and Jonah does his part to keep us laughing. I see you in him, Gabe. Sometimes I look at him a certain way or take a photo from a certain angle, and it takes my breath away. And for that moment, I have you back. And then you’re gone again and life just keeps trucking on. And that’s the way it should be I guess – the only way to survive. But I refuse to JUST survive. I’ll live for you and love for you and do everything I can to make you proud of me. Please ask Jesus to help me, Gabe. You know I can be impossible to deal with. Your poor Daddy. He’s so patient. And I know he just wants to live the kind of life you’d be proud of too. You are so much a part of us, even when we aren’t openly talking about you, you’re in the air we breathe, the thoughts we think, and you even still visit us sometimes in our dreams.
I was going to say that we love you more than you could ever imagine, but the beauty is that you know a much greater and more perfect love than WE could ever imagine or could ever give you. And for that, I’m thankful.
My heart is heavy as I sit down to write this letter to you. Another year has passed, another year without you. Today you would be two years old. I can’t believe it. You would be walking and talking and probably running me ragged. I would be the luckiest mommy in the whole world to have you here. I miss your warmth, your weight in my arms, your sweet face, your long dark hair, the feel of your skin on my finger tips, everything about you – everything I got to see and know, and all of the many, many, many things I didn’t.
I think, in many ways, it’s just getting harder. I see the new things Jonah is doing every day. I see his smile, hear his laugh, watch as he experiments with new sounds, clapping his hands, learning to crawl. And although I find joy in all the things he’s getting to do, I look at him and see all the things that I missed out on with you. Sweet Gabe, I ache for you.
I remember clearly the couple hours we got to spend holding you, touching you, seeing you for the first and last time. I remember joking about your mullet hair, your Grandaddy saying you were built like a football player – lean figure and broad shoulders (just like your dad, I might add), singing to you, and telling you goodbye.
I remember the day we buried you in the bright sunshine by the pond. I remember how when we first buried you, Daddy would leave bread by your spot so the geese would come keep you company. I remember Nana spending time with you in the early mornings. So much about those days is a blur and yet so much is astonishingly clear. I try to think about the joy and happiness more than the sadness – where you are and what you are doing now, how you felt no pain, how you went straight to Jesus… But sometimes, Buddy, sometimes those hard moments sneak in – the moment we found out you were gone, walking across the hospital parking deck toward the front doors, knowing I would have to deliver you but never get to see you open your eyes, having to let you go for the last time. Sometimes it’s too much to bear. There are nights I still lay my head on Daddy’s chest and cry for you, long for you and mourn for you just like I did the moment we found out you were gone. The selfish part of me screams, “I want you back!”
But the unselfish part of me whispers gently, “I would not bring you back if I could.”
I can’t lie, Gabe. You took a piece of me when you left. I will never be whole this side of Heaven. Very soon I’m coming for the piece of my heart that you stole. I know you are holding it for me. But I also know you are not waiting. What is time to you? Every day you spend with God, Jesus, the angels, our friends and family who’ve already entered the gates. I know you know me and you know my love, but you do not miss me. And I’m so glad about that. I don’t want you to live your life in need or want or yearning. And the beauty is – you don’t have to. You live completely fulfilled, joyously happy, never lacking. Your life is perfection. And when I do finally make it to Heaven, you will look up, blink, and say, “Oh, there you are,” as if I’ve just stepped away and come right back. And guess what, Baby Gabe, we’ll have ETERNITY to hang out and play and run and jump and sing – we can do anything you want. You’ll have had a head start, so you can show me all the best stuff and take me to the coolest places. And best of all, we’ll get to rest at the coolest place there ever was – the feet of Jesus.
Daddy and I were talking a couple nights ago about you being in Heaven. I told him that for some reason I picture you as a four or five year old boy, being crazy and wild and running all over the place. I don’t know why. And I don’t know what you really look like now, but I do know that I’ll recognize you. And over and over and over again I imagine the moment I hear, “Well Done,” and I enter the gates, and there you are. And you’re holding Jesus’ hand, but his eyes stare into mine, and he squeezes your hand, and lets go. And you run to me, and I squat down and grab you into my arms, and I hug you so tight and just breathe you in. And we laugh till we cry and spin in circles. And you say, “Oh, there you are,” and I say, “I’m here to stay.” And then you introduce me to Jesus. And even though I’ll be officially meeting him for the first time, it will feel like we’ve been together forever, and it will be the dream I’ve wanted for so long.
Come, Lord Jesus.
I hope you know how much I love you. I hope you can feel my love and that it’s just icing on your Perfect. I know you are happy and healed and free. And I am so thankful. But I miss you and tears roll down my face thinking of all the things we’ll not do here on Earth. But I hold onto hope and the promise that I’ll see you again. Daddy, Jonah, and I just can’t wait to finally all be together as a family with you. Please know that we love you, pray for you, and each day we live is one day closer to you.
And don’t worry. We certainly aren’t living all mopey and sad down here. Don’t get me wrong, there are moments full of anguish and terrible sadness. But we cling to the joy and the hope and the promise, and Jonah does his part to keep us laughing. I see you in him, Gabe. Sometimes I look at him a certain way or take a photo from a certain angle, and it takes my breath away. And for that moment, I have you back. And then you’re gone again and life just keeps trucking on. And that’s the way it should be I guess – the only way to survive. But I refuse to JUST survive. I’ll live for you and love for you and do everything I can to make you proud of me. Please ask Jesus to help me, Gabe. You know I can be impossible to deal with. Your poor Daddy. He’s so patient. And I know he just wants to live the kind of life you’d be proud of too. You are so much a part of us, even when we aren’t openly talking about you, you’re in the air we breathe, the thoughts we think, and you even still visit us sometimes in our dreams.
I was going to say that we love you more than you could ever imagine, but the beauty is that you know a much greater and more perfect love than WE could ever imagine or could ever give you. And for that, I’m thankful.
And we can’t wait for the day the veil is lifted, and we know that perfect love in its fullness too. But until that day, you live in our hearts, Sweet Gabe. We pray for the day we can hold you again, and while we wait, you just keep holding on to Jesus. Because that’s who we’re holding onto too. We’ll see you soon, Love. It’ll just be a minute.
Happy 2nd birthday, Sweet Baby Gabe.
All my love forever and ever and ever,
Mommy
Gabriel Matthew Williams
April 22, 2008
3:11 am
6 lbs 14 oz
20.5 inches
6 lbs 14 oz
20.5 inches
Tuesday, April 20, 2010
blogging break and sweet baby gabe
Hi Friends,
Nothing much to report today. We've hung around the house mostly. Jonah's CDSA (Child Development Services Agency... or something along those lines) Case Manager came today and we did his review of our goals and objectives and updated some of those.Thanks, Ms. B!
Then we had to go pick up prescriptions and picked up some lunch to go at Panera. Tasty, as always.
Jonah took a good nap, and then my mom and Aunt Shaina came to watch him tonight. Matt and I went to eat at El Maguey (the best Mexican food EVAH!) and picked up a few things at Target. Because, honestly friends, what's a date night without a little Target run? Nothing says romance like that red bullseye.
I know all of this is super boring (it's just been that kind of day), but my real reason for writing is to say...
I'll be taking a few days off from blogging.
Our Sweet Gabe died this day two years ago.
Tomorrow, two years ago, I checked into the hospital and was induced.
And on Thursday, two years ago, we said hello and goodbye to our first son.
And my heart is breaking all over again.
I have a post set to publish for Gabe on Thursday, but other than that, you may not hear from me for a few days. I'll be sure to check in early next week, but we covet your prayers during this difficult time.
This Thursday is Gabe's Day, next Thursday is Jonah's g-tube surgery.
I'm sad and I'm terrified, but I'm praying. I'm trying so hard to trust. I'm leaning like I've never leaned before.
So I'll see you next week, Friends.
May God bless you the way you have blessed our family. Thank you for everything.
In Him,
Patrice
Nothing much to report today. We've hung around the house mostly. Jonah's CDSA (Child Development Services Agency... or something along those lines) Case Manager came today and we did his review of our goals and objectives and updated some of those.Thanks, Ms. B!
Then we had to go pick up prescriptions and picked up some lunch to go at Panera. Tasty, as always.
Jonah took a good nap, and then my mom and Aunt Shaina came to watch him tonight. Matt and I went to eat at El Maguey (the best Mexican food EVAH!) and picked up a few things at Target. Because, honestly friends, what's a date night without a little Target run? Nothing says romance like that red bullseye.
I know all of this is super boring (it's just been that kind of day), but my real reason for writing is to say...
I'll be taking a few days off from blogging.
Our Sweet Gabe died this day two years ago.
Tomorrow, two years ago, I checked into the hospital and was induced.
And on Thursday, two years ago, we said hello and goodbye to our first son.
And my heart is breaking all over again.
I have a post set to publish for Gabe on Thursday, but other than that, you may not hear from me for a few days. I'll be sure to check in early next week, but we covet your prayers during this difficult time.
This Thursday is Gabe's Day, next Thursday is Jonah's g-tube surgery.
I'm sad and I'm terrified, but I'm praying. I'm trying so hard to trust. I'm leaning like I've never leaned before.
So I'll see you next week, Friends.
May God bless you the way you have blessed our family. Thank you for everything.
In Him,
Patrice
Monday, April 19, 2010
at the park
We enjoyed another cool Spring day today with a short trip to the park. We were kind of in a time crunch as we were quickly approaching nap time, and Jonah didn't last for long. But he was happy at first and tolerated the camera for the most part.
With Granny at the fountain.
And today was his first time on the slide! (My allergies MEGA paid me back for this one later.)
... still totally worth it (well, to me anyway).
With Granny at the fountain.
I'm loving these cool days and trying to take advantage of them. Soon we will be stuck inside again, as Jonah's skin can't tolerate the heat. Plus, he's pretty much always wearing a snowsuit so even if the heat didn't make his skin blister worse (which it does), he still wouldn't be able to tolerate it.
So anyway, we're just trying to live for what we've got now. I thank God for Spring... allergies and all!
Saturday, April 17, 2010
an evening out(doors)
Tonight we went to my friend Jeannie's house for dinner. Jeannie and David are my best friend Kathryn's parents, and I probably spent as much time at their house as I did at my own growing up. Kathryn and I were talking tonight about how great her parents' yard is, and how we took it for granted growing up. We played outside ALL the time, but I don't think either of us really realized until we were adults just how wonderful their property is. Tons of flowers, bushes, lots of land, and a huge yard. The woods back up to her house, and we spent hours as kids playing in the creek down in the woods.
It was great getting to take Jonah there and share with him a piece of my childhood. And it was GREAT hanging out with Kathryn, her parents and my mom for the evening. Jonah had a blast, and was, once again, a complete angel. He loves being outside... as you can see.
Kathryn and Jonah. Jonah is IN LOVE with Kathryn.
Yay Jonah! (That child is so proud of himself for learning to clap.)
It was great getting to take Jonah there and share with him a piece of my childhood. And it was GREAT hanging out with Kathryn, her parents and my mom for the evening. Jonah had a blast, and was, once again, a complete angel. He loves being outside... as you can see.
Kathryn and Jonah. Jonah is IN LOVE with Kathryn.
He played on this blanket the whole time we ate dinner and even let us enjoy dessert.
Yay Jonah! (That child is so proud of himself for learning to clap.)
Hope your Saturday was as sunny as ours. Can't wait for church tomorrow!
Friday, April 16, 2010
gabe's tree
This is our neighbor's VERY newly planted, not at all established dogwood tree. Notice it is blooming like a champ.
This is our VERY established, already here when we moved here dogwood tree that's in one of our front beds. It is coming out of the blooming stage, and is COVERED with flowers and leaves.
This is our dogwood tree that we planted in May of 2008. It was given to us by one of Matt's dad's coworkers after Gabe died. It has hardly any blooms left but is full and green.
And this poor, pitiful sight is the dogwood I refer to as Gabe's Tree. My siblings picked it out and planted it for me the weekend of Gabe's funeral. It is a sad little sight to see. But it is still alive. Jonah and I walked out there and prayed over it last week (when it looked even more bare than this).
And here it is up close. Right on the verge of blooming.
And it really makes me question why this little dogwood is SO far behind all the others? It was actually planted earlier than the other two non-established dogwoods in our yard. It has gotten the most attention and TLC. It has the prettiest shape and, good grief, we even looked up instructions on the Internet before planting as to how EXACTLY to plant it and how much to water it. Theoretically, it should be the best growing, most beautiful dogwood in all the land. So WHY is it lagging behind?
And I wonder if maybe, just maybe, it's not waiting until next week to bloom. Just in time for Gabe's Day. Maybe it's just God giving me a little gift to make me feel like Gabe is right here with us.
Maybe God has made this sweet little tree "late" completely on purpose. It really would not surprise me in the least. Come soon, Sweet Gabe. We can't wait to see your flowers.
This is our VERY established, already here when we moved here dogwood tree that's in one of our front beds. It is coming out of the blooming stage, and is COVERED with flowers and leaves.
This is our dogwood tree that we planted in May of 2008. It was given to us by one of Matt's dad's coworkers after Gabe died. It has hardly any blooms left but is full and green.
And this poor, pitiful sight is the dogwood I refer to as Gabe's Tree. My siblings picked it out and planted it for me the weekend of Gabe's funeral. It is a sad little sight to see. But it is still alive. Jonah and I walked out there and prayed over it last week (when it looked even more bare than this).
And here it is up close. Right on the verge of blooming.
And it really makes me question why this little dogwood is SO far behind all the others? It was actually planted earlier than the other two non-established dogwoods in our yard. It has gotten the most attention and TLC. It has the prettiest shape and, good grief, we even looked up instructions on the Internet before planting as to how EXACTLY to plant it and how much to water it. Theoretically, it should be the best growing, most beautiful dogwood in all the land. So WHY is it lagging behind?
And I wonder if maybe, just maybe, it's not waiting until next week to bloom. Just in time for Gabe's Day. Maybe it's just God giving me a little gift to make me feel like Gabe is right here with us.
Maybe God has made this sweet little tree "late" completely on purpose. It really would not surprise me in the least. Come soon, Sweet Gabe. We can't wait to see your flowers.
Thursday, April 15, 2010
chapel hill appointments
Jonah did AWESOME today. Seriously, we could not have asked him to be any better. We got him out of bed and started dressing change at 6:30, then he ate ten ounces and we hit the road. We hooked up his DVD player in the car, and he was sooooo excited. (Sorry for the low quality... these are cell phone pics).
He slept for the first 45 minutes, woke up and was in the best mood for the rest of the trip. We had to wait for about 20 to 25 minutes at the dentist office, and he just played with all the toys and was a complete angel.
He did cry while the dentist examined his teeth and did a fluoride treatment, but that only took about two minutes, so it was no big deal. And then the nurse brought in a pinwheel, and all was right with the world again. His enamel is still in good shape, but his teeth are smaller than they should be. I don't really know what that means, but I'm not really going to worry about the size of his teeth until they are his permanent ones. We have too many other things to worry about. I was very happy to hear that his enamel was in good shape. Dr. W just said to have fluoride treatments done three times a year with our pediatrician and gave us a soft little cloth to wipe his teeth at night. He said to use a toothpaste with flouride, that it wouldn't matter if he swallowed it if it was just a small amount. They want to see him again in six months.
We went to the car afterwards, and he took five ounces. No fight, but when he was done, he was done. So then we drove over to our dermatologist's office. It's in a little village with offices, shops, restaurants, and a market. We ate at a sit-down restaurant (GASP) there that had outdoor shaded seating. Once again, Jonah was a complete angel. Seriously, he had an awesome day. He played and then when our food came, we put him in a highchair (which he usually hates) and played and actually let us enjoy our lunch.
His dermatology appointment was right at nap time, so I was afraid the wrath was about to reign down upon us, but he was amazing. He was playing with me and laughing out loud in the waiting room. He had the receptionists cracking up, and he got the hiccups. And a laughing out loud, hiccupy kid is pretty adorable, if I do say so myself. Dr. M said he looked great and we were doing everything we should be. He agrees that, if Jonah's biopsies were correct and he is Junctional, he's most likely a Collagen 17 (which would be good... or as good as Junctional can get, I guess). He said his toes aren't bad enough to need anything done at this point, so we're going to watch them and see how they do, now that we're leaving them unwrapped. If we needed a plastic surgeon, we wanted to have it down while he's intubated and sedated for his g-tube surgery. But for now we think he's okay.
We went back to the car, and he ate five more ounces. He slept twenty minutes but woke up when we stopped to say hi to my sister-in-law and Asher and Ainsley. We probably stayed about a half hour and then headed home. He was amazing all the way home. For dinner he shared some of my Panera broccoli cheese soup, ate ten more ounces, and went to bed early. He was super tired. We are too. It's been a very long day.
So anyway, thanks for the prayers. Really, I couldn't have imagined it going any better. We loved our dentist and we've always loved Dr. M. Jonah is well cared for, and life is good. Jonah continues to blow me away day after day after day. He's a CHAMP!
He slept for the first 45 minutes, woke up and was in the best mood for the rest of the trip. We had to wait for about 20 to 25 minutes at the dentist office, and he just played with all the toys and was a complete angel.
He did cry while the dentist examined his teeth and did a fluoride treatment, but that only took about two minutes, so it was no big deal. And then the nurse brought in a pinwheel, and all was right with the world again. His enamel is still in good shape, but his teeth are smaller than they should be. I don't really know what that means, but I'm not really going to worry about the size of his teeth until they are his permanent ones. We have too many other things to worry about. I was very happy to hear that his enamel was in good shape. Dr. W just said to have fluoride treatments done three times a year with our pediatrician and gave us a soft little cloth to wipe his teeth at night. He said to use a toothpaste with flouride, that it wouldn't matter if he swallowed it if it was just a small amount. They want to see him again in six months.
We went to the car afterwards, and he took five ounces. No fight, but when he was done, he was done. So then we drove over to our dermatologist's office. It's in a little village with offices, shops, restaurants, and a market. We ate at a sit-down restaurant (GASP) there that had outdoor shaded seating. Once again, Jonah was a complete angel. Seriously, he had an awesome day. He played and then when our food came, we put him in a highchair (which he usually hates) and played and actually let us enjoy our lunch.
His dermatology appointment was right at nap time, so I was afraid the wrath was about to reign down upon us, but he was amazing. He was playing with me and laughing out loud in the waiting room. He had the receptionists cracking up, and he got the hiccups. And a laughing out loud, hiccupy kid is pretty adorable, if I do say so myself. Dr. M said he looked great and we were doing everything we should be. He agrees that, if Jonah's biopsies were correct and he is Junctional, he's most likely a Collagen 17 (which would be good... or as good as Junctional can get, I guess). He said his toes aren't bad enough to need anything done at this point, so we're going to watch them and see how they do, now that we're leaving them unwrapped. If we needed a plastic surgeon, we wanted to have it down while he's intubated and sedated for his g-tube surgery. But for now we think he's okay.
We went back to the car, and he ate five more ounces. He slept twenty minutes but woke up when we stopped to say hi to my sister-in-law and Asher and Ainsley. We probably stayed about a half hour and then headed home. He was amazing all the way home. For dinner he shared some of my Panera broccoli cheese soup, ate ten more ounces, and went to bed early. He was super tired. We are too. It's been a very long day.
So anyway, thanks for the prayers. Really, I couldn't have imagined it going any better. We loved our dentist and we've always loved Dr. M. Jonah is well cared for, and life is good. Jonah continues to blow me away day after day after day. He's a CHAMP!
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