Tuesday, August 20, 2013

It's been a year

It's been a year.
A year since I last held my precious Logan, a year since I got to kiss his squishy cheeks, a year since I last smelled his sweet scent. And it hurts as much today as it did a year ago. Maybe more.
As I write this, I am still in awe that he's gone. I have wished every single one of the last 365 days that it wasn't true, that he was still here, that I could see his cockeyed grin, rock him to sleep or hear his sweet voice. But he's not. So here we are, faced with a momentous anniversary that I'm not quite sure how to handle.

We have plans to enjoy the day as a family, to do some things we did with Logan and to carry on some little traditions we started as ways to remember the mark he etched on our hearts. It will hurt, but I have to keep reminding myself that I don't ever want the hurt to go away. It's part of remembering him, and I'd rather hurt than not have the memories of the short time we did have together. 
Amidst the grief and the sadness however, there is joy. Not happiness, but true joy. Logan is healed. He is no longer suffering the cruelties of our human flesh. He is running, playing and getting to experience things in heaven so wonderful that our feeble little minds cannot begin to comprehend. Oh, how that makes this mommy's heart leap! I am so ready to get there too, so I can see it for myself!
It brings me joy to know that he is home, where he was created to be. I said early on in this journey that Logan was not made for this world. None of us are. We are created for a very specific purpose. Logan just fulfilled his in 23 short months. He led people to his Maker. And that's what we are all ultimately here on earth to do, to live a life that points others to God, while keeping our focus on heaven. 
Thank you for walking this journey with us, for encouraging us and grieving with us. We thank God for you!

Thursday, January 31, 2013

Grief

After a long blogging hiatus, hunkered down with my little family, trying to sort through the pieces of our life, I am going to try to be more consistent with posting. Bear with me.

Grief is the strangest thing. I can see why so much research and study has been dedicated to it. We all experience it differently, and we can grieve over so many things. It's not just about death. I mean, it is for some people, and that is a very raw, hard grief. But we can grieve any kind of loss, or even the thought of impending loss.
I get to hang out once a month with a group of moms whose kid(s) have rare and/or undiagnosed diseases like mine, and we have talked a lot about the different kinds of grief we have all experienced. Every one of those women have grieved the diagnoses of our children. The reality that those little lives will never be what we had pictured when we learned we were having a baby, the reality that we may never get to see that child play soccer, graduate high school or walk down the aisle, the reality that we will likely plan that child's funeral and bury our babies. There is real, true grief there people... all seven stages (or however many there are), and it is not unlike the grief I have experienced after Logan's death. It's ugly, it's hard and it's not easy to talk about, especially when you feel like no one could possibly understand.
But today, as I got to have wonderful, rich conversation with a sweet friend, we realized that there are more people who understand than we might think. We have all dealt with crap in our lives, and are still dealing with it. Maybe we should give the people we come in contact with a little more credit? Maybe if we gave others more of a chance, they would surprise us with just how much they can relate? Just because someone looks like they have it all together, doesn't mean they do. Just because they talk about surfacey, inconsequential things, doesn't mean they're shallow. I could come across as both of those things from time to time, and I can assure you neither is true. I'm dealing with it the best I can for today, and that may mean putting up a front that I have it together or keeping my conversations distant and pleasant. I have no idea how I'm going to be feeling from day to day or minute to minute, so it is nearly impossible to prepare for it (or give those around me fair warning). So I'm trying to cut others a little slack, because loss sucks - no matter how big or small - and we're all going to grieve over a loss at some point or another.
And here's the good news (because He always has good news)... "The Lord is close to the brokenhearted and saves those who are crushed in spirit." (Psalm 34:18 NIV) That is us, the grieving, broken hearted, crushed in spirit. Thank you, God.

Sunday, October 14, 2012

Missing him

Most of you who read this blog know that our precious Logan went to be with Jesus nearly eight weeks ago. It seems almost impossible to believe that it has been that long. Perhaps the last eight weeks have flown by because it has been a very busy couple of months for us. They boys' birthday was on September 29. So, shortly after Logan's service, I threw myself into planning the best second birthday party for Griffin I could muster. We also took on the task of completing a couple of house projects that had been abandoned since Logan got sick. And while we were at it, we decided to plan a surprise baby shower for our dear friends the same weekend as Griff's party... the house was already going to be clean, why not? We had a wonderful time celebrating our friends and their baby boy on the way on Friday. Then Saturday (their birthday) we filled with a pancake breakfast, a visit to Logan's grave to leave some birthday balloons, our first trip to Chuck-E-Cheese for Griffin's favorite, pizza, and lots of fun games, and then we capped off the night celebrating Papa because it was his birthday too and sent some balloons up to Logan in heaven. It was a really difficult day - we missed our other birthday boy even more than usual - but we found comfort thinking about the heavenly birthday party he was having that put ours to shame, no doubt! Sunday was Griffin's party, and we worked hard to make it a fun day of celebration for him. We had balloons galore, a super fun bouncy house and even a surprise visit from a giant Elmo, thanks to Uncle B! Needless to say, we were all exhausted after a very full weekend.

I turned 30 the following Friday, October 5th, and was able to spend it with Jeff, my sisters, their husbands and some wonderful friends. It was a super fun night, and we made lots of memories! We celebrated another couple of precious friends at a wedding shower the following night, and the next two nights consisted of family pictures with each (Jeff's and my) side of the family. We really went overboard with the family pictures this year, but I know we will all be so glad we did. Now we will have quality pictures with grandparents, siblings and kiddos that we will treasure forever. We have been so blessed by the offers to do pictures of us and our family, we just couldn't pass them up! Then another wonderful friend gave us awesome tickets to see Les Miserables on opening night, so Jeff and I got an awesome mid-week date night. Then this past weekend, my parents kept Griffin so we could go to Dallas for the OU/Texas game. It was such a fun weekend, and while it was tough to leave our baby, we feel so very blessed we got to go.

Like I said, it's been a crazy full time for us. Most days it feels like it's not real, other days it feels all too real. That's why I think it has been so difficult to write any kind of post. I intended to write something the week he passed, and it was so busy and full of things to do that I barely got information about his service posted on Facebook. So many times since then, I have had thoughts or feelings that I planned to share, but for some reason, couldn't bring myself to write them down. For so long, I had fun things to do to get ready for the parties, pictures and trips, and now I don't. I know that many of the things I filled my days with were just that, me finding things to occupy myself. Seeking distractions and keeping busy has been my M.O. The last couple weeks, I've felt called to be more still, to stop filling every minute and seek the only One that can provide what I need. Tonight, Jeff and I finally sat down and read through all the wonderful notes written by those who attended Logan's service. While I had read a few at a time here and there over the last several weeks, it has felt too fresh and been too difficult for me to read through all of them until now. I can't say what was magical about today or tonight. As we were driving home from our niece's seventh birthday party, Jeff started tearing up, as we both often do at unexpected times, and we found ourselves both crying in the car about how much we missed our baby. Even now, as I type, it is so hard to say the words, "I miss him." That is what hurts so much. Everything we do, everywhere we go, every family event or car ride home, he is missing. A part of our family, a part of me is missing. And it hurts more than anything I have ever known. But, I feel like it might be time to start working a little harder on the healing process, so here we are. I know healing is probably still a long way off, but this blog served as such therapy for me during Logan's journey, I hope it might have the same effect now.

Thank you all for your relentless love and support. We have so many people still praying for comfort and peace for us, and for Griffin's complete and miraculous healing. You continue to sustain us and we feel so incredibly blessed by the body of Christ surrounding us.

Wednesday, August 8, 2012

Provision

Once again, I write a LONG overdue post. I wish I had more time to write, and I wish I wanted to spend the time I do have updating the blog. Because Jeff and I both feel strongly that it's important to update those of you who have faithfully supported us in prayer during this journey. We would not have survived to this point without those prayers. So, here goes...

Now almost three weeks home with our little guy, we have gotten a lot of things down. We feel really comfortable with all his meds and with the feedings (pump, formula, etc.), so that is great. We are so thankful to have been able to borrow and find several things - stroller, nap nanny, bath seat, bean bag - to make transporting and positioning him easier and to help give him a change of scenery from the bed in his room. We met our wonderful Sooner Start therapist last week, and she is working on getting him a special needs stroller, a bath seat and even a piece of standing equipment so he can be upright some of the time. So some more specialized equipment will be a huge blessing!

Some of the not-so-great parts are that Logan is very sleepy most of the time. He just doesn't have energy to do much of anything, and that is pretty heartbreaking. He has had some digestion complications that have caused some discomfort and fussy nights, and the poor thing can be pretty difficult to console when he's fussy. As parents, the hardest part is seeing him uncomfortable and unhappy and not being able to do a thing about it. We struggled for a few days with a little day-night mixup, where he was really restless most evenings from 9 or 10 until sometimes 2 or 3 am, so naturally he was making up for it by sleeping a lot during the day. For the last couple days, we have seen very little awake time from him. He seems to be working really hard to breathe, so we're just praying that he is not in any pain or discomfort and doing our best to spend time with him while making sure our other little guy is taken care of.

Griffin is still doing really well at Mother's Day Out. His teachers love him and it seems the feeling is mutual. I am SO glad about this. He has developed a new favorite word, "no," so that is lots of fun for mom and dad! On the other hand, he is still his precious, sweet self a lot of the time. He loves his cuddle time with mom & dad, and has had some really tender moments with his brother - bringing us to tears on more than one occasion. What a little blessing he is!

Last, but most certainly not least, we have been trying to figure out what to say in response to the overwhelming amount of physical support we have received. The emotional and spiritual support - as I said before - has sustained us. But we haven't talked about the financial support you all have provided, and I guess that's because we have yet to be 100% comfortable with receiving it. I'd like to think that we are not proud people, but we are pretty independent, I-can-do-it-on-my-own type people. I'm sure you can imagine how humbling it can be to accept this kind of help, and from many people we don't even know. Nevertheless, we are so, so grateful. People have done countless things for us, and continue to do so - set up a bank account, meal calendar, donated money, brought food, mowed our lawn, done yard work, provided a house cleaner - the list goes on and on. And now, there is a tremendous amount of time and energy being invested in a golf tournament / dinner / auction event that sounds like it is going to be an absolutely amazing event! We are so honored that so many people are selflessly devoting their most precious resources to put this on. We have been able to remain pretty hands-off (by our choice) and we trust that those working on the event are doing so with the same intentions we have.

Our main purpose for sharing our story so candidly has been to give the glory where it belongs - to God. He has been our comfort, our strength, our peace and our provider. A while back, when we were having concerns about bringing Logan home and all the logistics that would entail, the following verse was part of my quiet time...

“That is why I tell you not to worry about everyday life—whether you have enough food and drink, or enough clothes to wear. Isn’t life more than food, and your body more than clothing? Look at the birds. They don’t plant or harvest or store food in barns, for your heavenly Father feeds them. And aren’t you far more valuable to him than they are? Can all your worries add a single moment to your life?
“And why worry about your clothing? Look at the lilies of the field and how they grow. They don’t work or make their clothing, yet Solomon in all his glory was not dressed as beautifully as they are. And if God cares so wonderfully for wildflowers that are here today and thrown into the fire tomorrow, he will certainly care for you. Why do you have so little faith?
“So don’t worry about these things, saying, ‘What will we eat? What will we drink? What will we wear?’ These things dominate the thoughts of unbelievers, but your heavenly Father already knows all your needs. Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need.
“So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today." (Matthew 6:25-34 NLT)

God was clearly telling me that He's got this. There is nothing we will need that He can't provide. Though we may feel a little strange about accepting financial help, God is working through the amazing community around us to provide in this way as well. He is so good!

I am hoping to have some more links up on the sidebars so you all can follow along on Facebook and with the benefit event. We are so blessed and so thankful.

Tuesday, July 17, 2012

Leap of Faith

As many of you who follow our journey on Facebook already know, we have had a pretty tumultuous couple weeks. Last Sunday, the 8th, our doctor sat Jeff and me down and told us that after a couple days off the ventilator, Logan's lungs had begun to fill up again. He just doesn't have the strength or the ability cough hard enough to protect his airway, so pretty much any fluid in his mouth, nose or throat ends up in his lungs. After much discussion, prayer and deliberation, we came to the conclusion that putting our baby through any more procedures just isn't a good option for us. The doctor told us that we should start preparing for Logan's fight to soon be over.

Last Monday morning we were gathering our family to say goodbyes and making sure our sweet boy felt as loved and secure as possible. Out of nowhere on Monday afternoon, God showed us He wasn't quite through with Logan's journey on this earth. He woke up, acting happier and more playful than he'd been in days, and his oxygen saturation, respiratory rate and heart rate were steadily improving by the minute. None of us really knew what to think... some ups and downs like this are not unusual for a kiddo in Logan's condition. So we resolved to consider any days with him as a gift and to try to take each day, each hour at a time.

Since last Monday, they have been weaning his oxygen as he continues to do well. His lungs are sounding more clear and his cough is stronger each day. He has really made a tremendous turnaround from a week and a half ago. After more discussion and much prayer, we decided this week to take Logan home. We have done pretty much everything there is to do at the hospital, and it's time we try to live as a family of four under one roof again. We are going home on hospice care, so we will have a nurse come to the house periodically to check on our boy and make sure he is comfortable and pain free. We have spent the week getting equipment (hospital bed, oxygen concentrator, feeding pump) and supplies all delivered and set up at home. Discharge is set for this afternoon, and while we are feeling very thankful to be able to be together as a family again, it is hard to leave our amazing team at the hospital. Seriously, our doctors, nurses, RTs and even housekeeper have been so very wonderful to us. It is obvious how much they love our little guy, and I now consider them to be dear friends. I am tearful as I write about how we will miss seeing them every day.

Of course, we have worries and fears about doing this 'alone', because while we know we are far from alone, it will be a big change for us. As we take this step to try to do what's best for our family, we're working on giving these negative thoughts to God and know He will provide for our every need - physical, spiritual and emotional - as He has throughout this whole ordeal.

We are truly blessed in so many ways and are so thankful for the outstanding team of people praying fervently for our family. We love you all.

Wednesday, July 4, 2012

Happy Fourth of July!

We are so thankful to have had such a wonderful Fourth of July! We got to enjoy the day with Griffin and took him to our neighborhood parade this morning. Then we spent the afternoon at a friend's house, where we swam our hearts out and got way too much sun! He loved every minute of it, and so did we!!

A huge thank you to my dad and Jeff's parents for keeping our sweet Logan company today and to our precious friend Rachel for the most festively patriotic hospital room you've ever seen. We are so blessed!

Tomorrow is a big day for Logan. They are planning to extubate! He is ready to have that silly tube out of his throat. He spends most of his awake time trying to grab it and pull it. We'd love your prayers that he stays strong and breathes like a champ. His feedings are going great. They are using the g-tube exclusively now, and he's up to getting 40 mLs an hour, which is awesome!! His seizures seem to be a little stronger now that he is almost off of the sedation meds, so prayers for those to cease are much appreciated as well.

All our love.

Friday, June 29, 2012

Logan Update: game plan

First of all, we are totally & completely overwhelmed by the response we received this week after the news about Griffin. I wish we were able to respond to every message, text and post of encouragement you all have sent, but our time is better spent loving on our sweet boys so please know that we have read each one and are so very touched. If you have asked a question, I promise we will do our best to respond.

We had a 'care conference' with Logan's doctors yesterday to evaluate where we stand now that we are on day 30 of this hospital stay, and to develop a game plan to get where we want to be. It feels good to know everyone is on the same page and is working toward a common goal. We are so thankful for our team of doctors taking time to sit down with us and talk through every detail.

The surgeon feels like his g-tube site is looking much better, so they began feeding him through it yesterday evening. They started with a very small amount, and he has tolerated it well so they increased the rate this morning.

Neurologically, they feel he is stable enough on his seizure medications to attempt to wean him off of sedation. They are planning to do this slowly over several days and are giving him Methodone and Adivan to curb any withdrawal he may have. He does still have persistent twitching in his face as well as his left neck and shoulder at times, but complete seizure control is not the goal at this point. We want them controlled enough so they don't spiral out of control, but don't want to have to continue to rely on operating room drugs to do it.

From a respiratory standpoint, the goal is to get him off of the ventilator. Once he is on lower doses of sedatives, we should be able to see what his true respiratory status is. They are lowering the vent settings slowly as they lower the sedation, and the idea is that he will need less support as his body wakes up more. If all goes well, he could be ready for extubation as soon as early next week. They have a plan in place to go immediately to a bi-pap machine as soon as they extubate to give him the support he needs.

Specifically, our prayers are these:
- He will tolerate weaning off the sedation meds with little to no side effects and no increase in seizure activity.
- His digestive system will kick in and move his formula through just like it should.
- His lungs will be strong, his airway will be open and he will be able to take deep, consistent breaths without the help of the ventilator.
- Most of all, we pray that our baby will be peaceful, comfortable and pain free.

Bless you all for praying with us!