"I Came Here to Live"

Gabriel had a routine checkup with Dr. Rouse this morning and it is amazing how quickly we were in and out and on our way. There wasn't much to say! Dr. Rouse, Gabe's surgeon for those who don't remember, came in and just stood in the doorway smiling at a very active Gabe who was grunting and trying to climb into a big chair. Gabe made it up into the chair unaided, plopped his little pamper-butt down and grinned at each of us. There was no doubt in his mind he would make it - never has been, I don't think. We talked for a bit and the boys filled Dr. Rouse in on our recent excursion to the Smokey Mountains as Gabe climbed up and down the chairs and explored the room, stopping now and then to identify (usually incorrectly) the colored tiles on the floor. Eventually we got around to the exam, which was pretty unremarkable. His ribcage isn't pulled in as tightly as it was 6 months ago, which is good. We were a little concerned that since it was pulled in so much due to the scar tissue and the size of his patch, improvement in his rib cage COULD be a sign that the patch was coming undone. Since there have been no other symptoms, Dr. Rouse didn't think so but we have scheduled a yearly xray in November before we see him again to monitor the patch. We know if we get worried, either he or our pediatrician will order the xray sooner to ease our minds. We are so thankful for the "normal" life we have been leading for the last year, but sometimes it brings on a slight sense of unease...it can't really be this easy can it? Shouldn't we still be dealing with problems? medications? medical equipment? therapy at least?? He doesn't need any of it and is thriving...up to a whopping 30 lbs! We have reached that lovely place where there has been just enough time and distance that while we have not forgotten all that has transpired (not expecting or really even hoping for that) but it can sit on the back burner and we can enjoy where we are today. We continue to pray this stretch of good health holds out for all of our boys, just as we continue to pray for those who are not so fortunate as we are.

MOST of the time, we live from day to day and don't dwell on what has been, but Sunday night we went back in time, just for a moment. After a long day of packing up, driving home and then unpacking from a wonderful few days away from the "real world", Josh and I were unwinding on the couch and flipping channels after three exhausted little boys had been tucked in for the night. We landed on a GAC special featuring Trace Adkins on his 10 day USO tour. It was a little emotional for me coming from a military family, but not unexpected or overwhelming. But I was not prepared for one stanza in one song I had not heard before. One of the soldiers had tattooed a line from a Trace Adkins song on his wrists. One wrist stated "I came here to live" the other read, "I didn't come here to die". It was moving and touching to see what the song meant to the soldier and how much the soldier's actions meant to the artist, and when the recording of the live USO performance of the song began, I expected a little mist in the eyes or a lump in the throat, but not the sudden surge of raw emotions that had nothing to do with the patriotic nostalgia and worry that comes from being a "military brat". The last verse of the song Trace had written cut like a sharp knife on a barely healing wound.

The verse goes like this:
"For eighteen days all I remember
Was settin' there at his side
Sayin' son open up your eyes
Just open up your eyes
'Cause you came here to live
You didn't come here to die
Son you came here to live"

As I listened to the words set to melody and saw the feeling on the face of the singer, my own raw emotions from over two years ago came rushing back in sharp waves. Nothing was certain those early days or weeks, but as time passed it was apparent to everyone that our son came here to live. God was with him before he entered this world and gave Gabriel the strength he needed - to give us all the faith we needed to get through a seemingly impossible situation. Gabriel means "strength from God" and was chosen very deliberately. He came here to live, and he is, not just physically either. He is stubborn and lively and engaging and strong-willed! Tempermental and joyful all wrapped into one. He makes us laugh daily, whether he has stuck out his stubborn lip and lowered his eyebrows or is peeking back at us upside down through his legs, grinning.

The body is weak and not meant as permanent housing, we all know that. We've witnessed the miracle of modern medicine and all that can be accomplished, or "saved" so to speak. We may win physical battles along the way, eat healthy, exercise, beat the flu, beat cancer and survive physically against all odds, but in the end, eventually, the body will fail us. We may win the battles, but we'll never win the war. In all its glory and wonder of perfect design, the body was designed to be temporary. I'm not suggesting all of this as a reason not to take care of our physical selves, quite the opposite. We have an undetermined amount of time in this one body and the more time we have here, the more time we have to win the spiritual war, which IS possible.

Dad taught me not to worry about things I can't control - which is most things. But I also learned that there are a very few things within my control - such as my own actions and responses to what happens to me, that IS beyond my control. (ok, that was as clear as mud, but if you read it a few times, it makes sense) I am still learning, but am getting better I think, a little wiser. I can choose to be unhappy or grumpy, which is necessary sometimes, and then I am able to choose happiness. To get over myself and those things I can't change - if I don't love something about my life, there may not be a lot of options, but I am learning to work as a team with what I have to fix it. We're here to live - to live! There is more than one way to die - physically, emotionally, spiritually...and through my infant son and God's grace, I have learned that I too came here to live!

Countdown to Gabe's birthday

Thanks to all who have been with us on this journey! Gabriel will be 2 on Sunday! I have another slideshow that I will post on Sunday, highlighting more of the past year.

Make a Smilebox slideshow

Run of the mill update

How exciting to say things are ordinary - sounds strange, like a contradiction. We have had a very uneventful winter, until this past week! All three boys are on antibiotics for strep, and doing very well. One would think that three kids with strep would be miserable, and while it hasn't been a holiday, everyone responded to the meds just like we'd want them to. By the time Gabe started with a fever, Kendrick had already popped positive on his strep test and was on antibiotics. When I called the pediatrician, they went straight to the meds and didn't worry about the culture. We've gotten lots of sympathy from friends and family, but truth be told, I don't feel like we need it. Who cares? Ok, so it sounds a little "wrong" for a mother to say such a thing when her child/children have something like strep, but then you'd have to understand that our perspective has changed. We can deal with this. We know what to do. We can give our children the medicine they need, we can give the something to drink and they are able to drink it, we can provide comfort and sympathy when they don't feel well. We aren't overwhelmed with helplessness by something like strep. So while we do care that our boys are sick and are doing everything we can for them - we are blessed that everything we are doing is enough. So really, in the grand scheme, who cares about a little strep infection.

On to Gabe. This past month he had a follow up with Dr. Rouse in surgery followed a few days later by his check up with Dr. Stevens in pulmonology. During both appointments we were able to report that Gabriel had been discharged from first steps and was reaching all of his developmental milestones. At both appointments, percentiles were above the 50th for his weight and height. A year ago we were struggling with his weight and feeding issues. Today he eats more than either of his big brothers do. The spicier, the better! Dr. Stevens actually asked when we last had to give him a breathing to which I was able to reply - the last time he was on a schedule for them. Meaning, we haven't given him a treatment since we were able to go to PRN.

We don't know why Gabe is doing so well and others we know continue to struggle. No one is more or less deserving. We don't have these answers, but we continue to pray not only for Gabe's continued good health and that he may never need another surgery, despite the what ifs and possibilities, but we also pray that others will see their children restored to good health. For those who have always had healthy children as we have been so lucky with Justin and Kendrick, we pray it will always be so.

On another note for those who still check here. Over the boys spring break, we are planning to spend a few days in Indy - without any appointments! We are planning to join the Hufty's in a run to raise money for Riley, then on Sunday March 22nd we plan to host a dinner at the Ronald McDonald House inside of Riley - joined by a couple of other families to help. If anyone reading this is interested in helping, we would love your support. This is an important opportunity to give back some of what was given to us when we needed it most. We will be feeding approximately 75 to 100 people along with providing all of the paper goods, utensils and drinks. If anyone would like to donate some paper goods, 2 liters or even a little cash to help us with the cost, that would be fantastic. Prayers are always appreciated as well. Thanks everybody!!

I forgot about something, deliberately or inadvertently, I am not sure.

We rarely miss Grey's Anatomy - either "live" or on dvr. This week a child was running out of time, seemingly HAD run out of time, and his doctors brought in his mother and told her to help him let go. She held his hands and told him how much she loved him. Then she whispered that he could go, she would be ok and he shouldn't worry about her. Ofcourse Josh and I are sitting on the couch and I am unable to swallow for the lump in my throat. We aren't speaking to each other because we know where our thoughts are. It turns out I didn't know as much as I thought I did.

Last night we are both having trouble sleeping and we are lying in bed talking, mostly about Father Gregory's homily. I missed it since I was teaching the children's liturgy, but it had been on Josh's mind most of the day and he relayed what he remembered to me. The homily centered around FOCA and Father, in the eloquent way he has, explained things in a way that takes a seemingly complicated topic and makes it really quite simple. The point I am weaving my way around to is the sensitivity it touches off in us, how we begged God for our child's life and were blessed. It is impossible for us to entertain willfully ending a child's life, at any stage. The parallels are starting to converge. I had our experience with Gabe swirling around in my mind while watching a fictional family experience real emotions...Josh was remembering something a little more specific...something I forgot. He reminded me last night. May 25th 2007, we are at Gabriel's bedside, just the two of us, watching him fight for life. We know that very soon Dr. Rouse will come back and give us hope or likely tell us there is nothing more than can do. I am holding Gabriel's hands and pleading for him to stay with us...then I concede that it is ok for him to go. We prayed together and apart quite a bit during that time and I remember begging God to fix him, to let him stay with us. I also remember finally praying that if he couldn't be fixed here, that Jesus would hold him and free him from pain. I forgot I said it out loud to Gabriel, but Josh hadn't forgotten. I can't imagine what he must felt standing there, hearing me say that to our baby son.

I don't know why this is coming out now - but it has been a strange week of revisiting. The week began with our discharge from First Steps, then Gabe's completely normal well-baby check, then the fictional TV show that took us back to a very real near loss. Friday night I got to have a late dinner with a friend who was with us in the NICU, just after I said those words to Gabriel and just before Dr. Rouse came back from reviewing his xrays - we talked about those moments this past Friday night and I don't think we had before. Everything happens for a reason - no coincidences.

Gabe had a well-baby visit yesterday - and everyone was not only happy to see him and his big brothers, but thrilled with his progress. The nurse asked me what therapy he was receiving and I was able to report that on Monday (the day before the appointment) we signed our official discharge papers from First Steps. There is nothing we need from the program any longer - no OT, no PT, no developmental therapy of any kind necessary. She stared at me for a second and then gave us all a big small saying, "Isn't that amazing! What a miracle boy". Couldn't argue with her on that one. She weighed him, took all of his measurements and then we waited for Dr. Voyles. When he came in, we went over the charts and discussed the percentiles. Last year, about this time we were just weaning from the tube after Gabe's nasty flu - his weight was dropping and we were struggling to keep the weight on and still be allowed to push for oral feedings and limited tube feedings...we were slipping below the 20th percentile and keeping a close eye on his diet and his weight. Yesterday he weighed in at 26 lbs - which put him at the 45th percentile!! Height was in the 55th percentile. He is right in the middle - right in the NORMAL range. What more could we ask for? We went on to discuss all of the age-appropriate milestones from speech and receptive language to climbing and eating habits! Dr. Voyles examined him then looked at me and asked, "Do you ever just forget how he started out in life?" I responded "no" but knew what he was getting at. Everything we and our team of therapists and medical professionals have worked for the past 20 months (plus more if you include maternity) has pretty much been achieved. It would be easy to forget how we started out just to look at him. If you didn't know us or Gabe and his story and we met somewhere - you would never guess what he had been through. You wouldn't even get a feeling or suspicion. He chatters and learns new words all the time, he smiles, laughs, plays and throws fits. He eats all kinds of new foods - and throws other new foods on the floor, then watches to see how quickly the dog scampers over to clean it up. He spits at the table and then laughs and spits harder when his brothers laugh at him. He loves to climb up and down the basement stairs, carries his own dirty clothes to the hamper, smiles and flirts coyly with strangers, plays peek-a-boo and bangs metal bowls with a wooden spoon. He is just like any other budding toddler. He bears the physical scars that continue to fade, but will never vanish - just as we thankfully bear all of the emotional ones. Those scars are not quite faded enough for me to say "yes, sometimes I DO forget". But I suppose the longer we function under the guise of normalcy, the more possible that may be. I don't want to look at him and think about how close we came to never knowing this little boy and the helpless anguish of those first hours, days and weeks..., but I'm not sure I want to completely forget either. It is amazing how simple and simultaneously complicated my thoughts can be at times. As we have done in the past, we will be thankful for where we are, remain vigilant and not dwell on what may yet lie ahead. Thanks again for coming along on this journey - the here and now is a wonderful place to be!

Merry Christmas

I sit here this Christmas morning, surprised to be waiting on two children to wake up. Well, maybe not. Gabe was up for a while last night, and he doesn't quite get the sense of anticipation just yet. Justin WAS up at 5 AM, but we sent him back to bed, and he is still sleeping. So Kendrick is patiently (no really, he is pretty content to wait!) waiting for his brothers to start shredding into the many colored packages around the tree.

Last night, after returning from the Children's Mass, we lit candles on cupcakes and sang Happy Birthday to baby Jesus and go Grandma Maggie - who shares this special birthday. We try to interject the true reason behind the celebration whenever we can, and they do a good job of paying tribute to baby Jesus right along with Santa. When Justin asked how Santa really knew if everyone was being nice or naughty, I told him since Jesus was everywhere, so He tells Santa. That satisfied Justin for now. We can only hope the magic lasts.

Our greatest gift this year is a happy healthy family. Gabriel was discharged from OT this month, just as we thought he would be. This was the last discipline for First Steps we were involved in. It was another bittersweet farewell as we move on in this amazing journey. I talked to the mother of an Autistic child last week and she mentioned that he has therapy several times a week with many different disciplines. It was a reminder that despite Gabriel's tenuous beginning, we are incredibly blessed not only to have him here, but also to see him function as a normal child. He had another echocardiogram this past Monday and we will get another xray next week to continue monitoring his progress and his patch, but we no longer hold our breath in anticipation of these results. We feel comfortable all will show that he continues maintain health and the patch is holding. Some day we know that these results may be different, but we are enjoying today and all that we have to be thankful for. Christ is here in our lives every day and we welcome the opportunity to welcome Him again and again - especially on this holiest of days. We wish God's blessing to you and your families and hope you can feel that same sense of awe and hope that must have been felt that first Christmas by shephards and kings alike.

Merry CHRISTmas!

One more thing

It seems that throughout our journey this past couple of years, there have been plenty of "one more thing" moments. This time it is a definite positive. Karen, our physical therapist, has officially discharged Gabe from PT. The goals we set just about a month ago have been met. Gabe continues to amaze everyone. She evaluated him to be sure he was really ready for discharge and I signed my last physical therapy progress report. As we talked about Gabe and thought back to where we started, I think she was tearing up a little bit, and I swallowed the lump in my throat. We've been so blessed with wonderful and talented people caring for Gabriel even before he was here. Our therapists fit right in. During yesterday's session, we probably did more talking than therapy. She frequently works with Ginger, our OT, and they talk about Gabe all the time. They are both amazed at how quickly this day has come, despite the odds. This is the first DH baby she has worked with who has left First Steps. Typically they still need some therapy beyond age three. What makes it even more amazing is not only how quickly he has achieved his goals, but how quickly he did it with the size and seriousness of his defect. We talked about that too, about where we started. She asked questions about the prenatal timeline and that first week at Riley. I went back to places in my mind I don't visit too often anymore and brought up questions in my own mind I may never have voiced. There are so many unknowns about his development and what happened - both how and why. They are questions that cannot be answered and do no good to revisit, but it's human nature I think. I relayed the shock we felt that first night when we learned Gabe might not survive. I remember the compassion of everyone involved and how they patiently tried to explain the unthinkable. I also remember falling asleep with my head on his bed and then being wheeled back to my own room to get some sleep so we could come back and face a new day and whatever it might bring us. I remember the questions that swirled around in my drug-induced fog of a mind and how they bounced into the events of the day and all we were trying to process. I remember thinking about the countless ultrasounds we'd had over the past months and desperately repeating to myself, "but I saw him practice breathing, how can we be faced with this now".

We talked and relived and in the end just did what we have always done, quieted the questions and enjoyed the moment. As it was the day we were discharged from Riley, it was a bittersweet day. A proud moment tinged with some sadness that we wouldn't see this person every week anymore. Such is life. We will likely go through it again next month as Ginger thinks our next OT session will also be the last one.