Button Snafu

We almost made it to the point where I did not have to replace my daughter's g-button. Almost. I thought I was in the clear, that fate had smiled down on me and only allowed it to come out when my husband was there. I have held Wimberley before while he replaces it, but I have never actually had to do it. I was at the park Monday morning with my friend, Ashley (a fellow tubie mom I featured last week) and we were talking about her upcoming trip with her husband. Her mom would be caring for her two boys and Ashley mentioned her mom's nervousness and anxiety about the button coming out. Ashley told me about using a "catheter" piece that she had laid out for her mom to help with the button insertion. I had no clue what she was talking about but learned about this tool that was included in the packaging with the button kit. Little did I know I would be SO grateful for that nugget of information a mere five hours later.

 

That afternoon, Wimberley was playing on my bed while I folded clothes. Brother bear was still napping (nothing short of a miracle that he was able to miss out on my full panic mode). I walked around to start putting laundry away and there it was, on the floor at the edge of the bed. Wimberley had slid down on her tummy and it must have caught just right and popped right out.

 

 

 

Above is a picture of what the g-button looks like. Wimberley is the proud owner of the Mini-ONE. The device is genius - I am sure the person who invented it is sitting pretty in some mansion because of the riches he acquired from this invention but let me tell you, he deserves it. This little medical device is a lifesaver for so many and I am so grateful that Wimberley lives in today's day and this location because we had access to this.

 

When Wimberley's button popped out this week, the balloon (that acts like a stopper and keeps the b-button in her stomach) was still fully inflated. When I saw it, I started to panic, first on the inside and then physically.  To get the button back in or to put one in, you have to start with the balloon being inflated so it can slide in the hole in her tummy. Once you have it in, you have to use a syringe to push water into the balloon port to inflate the balloon so it can act as a stopper and keep the button in place. The feeding port goes straight through the middle of the balloon so food (liquid or pureed) can go straight into the stomach.

 

I knew I had to get it back in and knew I would have to do it on my own. I went and got the supplies I needed and immediately deflated the balloon so I could get it back in. Now, Wimberley is aware of this thing in her tummy and absolutely dislikes for it to be touched or moved or anything. When I laid her on the bed, I told her I was going to have to put her button back in and she immediately started to cry and say "No, Mommy". I remembered Ashley's tip from earlier and got the catheter. I was literally pouring sweat.

 

I'm not going to lie, as grateful as I am for her button, it seriously creeps me out. The thought of a hole in her body and her stomach seriously makes me cringe. I dislike looking at it, dislike feeling it, and usually whenever I check on it, I feel for it through her clothes. I am basically a wimp about it. I have been her main caregiver throughout her life and obviously had to access it the most when we were using it for nutrition, but since we are not using it daily now (thankfully), it is like I have this weird love-hate relationship with it. So when I lifted up her shirt and saw the hole in her body, it made me cringe and sweat even more. I literally stopped and prayed out loud for the strength to quickly replace it to the one person who I knew could give it to me in that moment.

 

(I should mention that I know a lot of mommas who have children with buttons and this process is not nearly as daunting as it is for me. At the end of the day, replacing it is not that big of a deal and they handle it with strength and grace and just do it. For me, I am better at the information gathering and appointment making and question asking. This part is just hard.)

 

And I did it. The catheter helped me immensely. Like, lifesaver status. Because not only have I been lucky and had my husband there when it has come out previously, but it has always come out when there is more than one person. Because Wimberley struggles against you when you put it back in big time. And this time was no different, except I had to hold her down and put it in alone. I sang "Jesus Loves Me", one of her favorite songs, and got her a sucker to try and occupy her. It worked, I got it back in and she was fine two seconds later.

 

Oh, and then I had to shower because I was soaking wet with sweat.

 

All in all, I was proud of myself and grateful I was pushed into this opportunity because I can connect even more with this process and with what doing that looked like and felt like.

Warrior Mom of the Week: Meet Ashley

Thank you for checking out a more detailed story of my sweet friend, Ashley. She was my saving grace summer 2014 and continues to be that for me on several levels. In June 2014, my neighbor mentioned to me that there was a mom in our neighborhood whose son had a g-button like Wimberley. She asked if she could give her my number and Ashley called me later that week. We met up for coffee and instantly clicked. One, because we are similar in many ways, but most importantly, because we are warrior moms with the same little warrior baby issues. The WHY behind each of our babies having the g-button is different and our journeys have been different but the bottom line is both of our little ones have the same unique need: that eating orally is a struggle.

The Judd Family - photo taken by Genna V Photography. Find her at http://gennavphotography.com/

Ashley just gets me. She gets that it makes me wince when someone tells me how tiny Wimberley is. She gets that going to a restaurant with a baby who is fed by tube sucks. She gets that our schedule was run by that feeding pump and that you get so nervous in large crowds with the tube hooked up. And she gets that this journey is a marathon and it is hard. I mentioned Ashley in a previous post, when I said that empathy is something every Warrior Mom needs and believe me, I still stand by that. When I asked Ashley if I could feature her in my first Warrior Mom of the Week, I was ecstatic that she agreed to share her story and even more ecstatic after reading it. I know Ashley. I know her story. I love her son. But re-reading her story made me celebrate their progress all over again because in our busy day to day lives, we forget to focus on others and we forget, even of those closest to us, what they are dealing with within their home and within their family.

Ashley found out at 36 weeks, via ultrasound, that her second son, Wesley would be born with what the doctors thought was Multicystic Dysplastic Kidney Disorder. According to the ultrasound, it was present in his right kidney. It was explained to Ashley and her husband, Joe, that most infants with this diagnosis will lose the kidney that shows signs of the condition and they were given a checklist of things they would have to watch for the rest of his life to ensure safety to his remaining kidney on the left side. What was also mentioned at that appointment was that they could not confirm at the time that the MDK was not present in his left kidney as well, making it a potentially lethal diagnosis. We were immediately sent to a urologist at Children's in Downtown Dallas to do an in-depth ultrasound and confirm that the diagnosis was exclusive to just the right kidney. We left that appointment with good news and a lot of research. It appeared that Wesley would lose his right kidney, but the left kidney was perfectly healthy. Praise Jesus! 

Wesley joined Ashley's family the evening of September 5, 2013. He came out beautiful, pink, and well...squeaking is the best way to describe it. The NICU team was in the room given the still slim possibility of a fatal diagnosis received in the womb. He was monitored thoroughly and immediately sent for an ultrasound of his kidneys. Ashley says, "Joe and I prayed continuously for good news, but at the same time, we kept wondering, why did our kid sound like a squeaky toy?? 

The doctors reassured Ashley and Joe it was just amniotic fluid that needed to cleared and he would be completely fine. They were also were given the incredible news that what was showing up on the ultrasounds was not MDK, but actually pockets of fluid from hydranephrosis of the right kidney (a condition in which the kidney does not drain properly). Hydranephrosis is not that uncommon and generally works itself out over time. Ashley remembers being so grateful that their baby boy was blessed with two kidneys!

After coming home from the hospital, every single person and doctor that met Wesley made the same comment, "Man, he is loud. Why does he squeak so much? Is that just his breathing?" Ashley and Joe has started to notice his breathing was becoming more and more labored, especially during feedings. She could feel his poor rib cage press into her every time he sucked and swallowed. It was obvious to Ashley that eating was a lot of effort for Wesley. Generally feedings would take well over an hour, and even then, Wesley would not get much nutrition because he kept falling asleep.

Ashley says, "By the GRACE of GOD, my pediatrician quickly realized he was at a loss for what was going on and sent me to one of my warrior teammates, Dr. John McClay, an ear, nose, and throat doctor (ENT)." Dr. McClay looked at Wesley and realized something more was going on. He sent Ashley and Joe home with breathing treatments and the start of reflux medication. After two weeks, Ashley called Dr. McClay one morning in tears to report that she honestly thought her son was dying. Ashley felt like Wesley was shriveling away, and his breathing was becoming more and more labored. Dr. McClay told Ashley to pull over on the side of the highway and he would have a plan for her. Ashley felt desperate.

He called back and told Ashley that they had earned a new teammate, Dr Michael Russo, GI, and he would meet Ashley and Wesley at his lunch hour at his office. She hurried there and she knew she had met the man that would save her son's life. (This part literally brings tears to my eyes because Ashley is who referred me to Dr. Russo and I feel the very same way about him.) He took Wesley from Ashley's arms, sat her down on the chair, told her to cry it out, and he would have them checked into the hospital within the hour. Ashley says she will never forget the moment that he looked at her and said, "You do not have to do this anymore on your own." She sobbed out of pure exhaustion, fear and relief. Ashley, Joe and Wesley started their first hospital stay that day, and started feeds via the nasal gastrointestinal (NG) tube. It was a slow start to see what Wesley's gastrointestinal system would tolerate, but Ashley immediately saw color come into her baby's face and his eyes actually open and look at her.

Wesley received his NG tube in October of 2013, a mere 3 weeks post-birth. He had several more hospital stays in their future, including two treacherous and long PICU stays that both broke and rebuilt her heart, but Ashley and Joe were finally seeing their son start to thrive. During their journey, several diagnosis were thrown around but the ones that were finally settled upon were: Hydranephrosis of the right kidney, Subglottic Stenosis, a Partial Paralyzed Right Vocal Cord, severe GERD and Failure to Thrive. Wesley did not actually reappear on the growth charts until he was 6 months old, and it has been an epic battle to keep him on there. 

Ashley wrote this when I asked her to summarize her experience with Wesley as an infant. "During his first year of life, I spent most of my days in and out of specialists offices. To date, our warrior team includes: Our Pediatrician, a Pediatric ENT, a Pediatric GI, a Pediatric Pulmnologist,  a Pediatric Urologist, a Geneticist, two in-home nurses, a Physical Therapist and a Feeding Therapist. Wesley has made strides that none of these doctors thought he would do. Given all that he had to overcome, he now looks and plays just like a normal little boy, although on the small side, and a little delayed physically. My journey is not over yet, and I fully anticipate hard days in the future. But today we are living in the moment, and celebrating what a rock star my son is."

I asked Ashley two questions that I think are applicable to life as a Warrior Mom and I love her responses. Hopefully they will help you as much as they have helped me.

What is the most important thing you have learned since becoming a warrior mom?

This was a very tough question for me. I feel like I could write an essay on all the things I have learned in the last two years. But I would have to say, that the most important thing I have learned is unequivocal compassion. I have met hundreds of moms over the last two years that make my journey seem simple and small. There were days, especially in the PICU, where all I wanted was someone to bring me clean clothes and hold my hand for just a few minutes. Now, whenever I hear of a mom going through struggles, my first response isn't always, "I will pray for you". It is "I am on my way, and praying continuously."

What is one piece of advice you have for other warrior moms?

Reach out. Let people in. Your days are dark and lonely and you will run the gamut of emotions on a constant basis. People often want to help, but medical equipment and honestly, the pure range of emotions are overwhelming for many people. When friends call, answer the phone. When they ask what they can do, tell them and do not be ashamed to accept help. You will come back to life quicker if you have a support system in place. 

Y'ALL. I just love Ashley. Her strength and determination and passion for her son and for other moms going through a tough time. Bottom line, she is fabulous. And there is more to her story. Stay tuned.

A few weekends ago, our pastor gave a message. A hard one to hear. His basic gist was that if God were to give us nothing more, we would still have every reason to be grateful to Him for the sacrifice He has already given us. Basically, what He has already done for me trumps everything that is to come in my future, highs and lows. It has really stuck with me. Several years ago my mom got me a book that documents Christmas each year. Kind of like a Christmas diary. There is a spot for the traditions you followed, your Christmas card, and a brief overview of the year. I have loved filling it out and it is special at Christmas each year to get the book out and look back on our many blessings as well as the struggles that we may have endured. This was 2014.

So when I got it out this year, this is what I found:

An empty page where 2014 should have been. Multiple feelings washed over me all at once. Sadness. Gratefulness. Guilt. Shame. And then reflection.

Sadness. Sadness for what looked like a year full of nothing. Sadness that a year ago I felt in such a tough place that I didn't take the opportunity to get this book down, dust it off, and document our lives. Sadness that I didn't take the time or make the effort to put together a Christmas card when in previous years, we almost always had one. 

Gratefulness. Gratefulness for where we are today, for Wimberley and her progress. For surviving that season that felt so lonely and dark. Gratefulness that this year our Christmas cards are in the mail and our book is full of tribulations and triumphs that happened this past year. 

Guilt. Guilt that I didn't take advantage of that first year with Wimberley, despite the issues we had. Guilt that the book for Graham's first two years of Christmas with us is full of events and activities and a shining Christmas card and Wimberley's is blank. 

Shame. This is probably the hardest one. Shame that I didn't glorify Jesus more. Don't get me wrong, I turned to Him more than I feel like I ever had in my life. I was in constant dialogue with our Father. I was grateful for the progress we made, every milliliter Wimberley took by mouth. Grateful for every phone call, every text that showed us how loved we were. But still, shame. Shame because even though I turned to God more than I ever had and relied on him more than ever and worshiped him more than ever, I still didn't realize that all of that didn't matter. Because in those moments last year, I still didn't get that I truly had so so so much more beyond my little world. That God owes me nothing. Literally, nothing. Wow. That is so powerful. 

Being a Warrior Mom is something I am thankful for now. That wasn't always the feeling when we were in the thick of it and I am grateful that I am able to be in the place I am now. But I am thankful for it because of what it has taught me. So this year, my book will be full. (Picture will have to wait until our Christmas cards come in.) And my new daily prayer is that every year here on out be full, no matter the season, no matter the triumphs and struggles we go through because Jesus is enough. God has already done enough for me.

Gratefulness at the Fall Festival

This is going to be short and sweet...just something yesterday I experienced that I wanted to share. It was a surreal moment for me - a moment I was grateful to have experienced the journey we have had. I should say that these moments have happened before. I  am grateful for medical knowledge and medical technology, I am grateful for the bond my little lady and I have because of this, and I am grateful to have seen God's hand it, BUT this was different.

I was grateful to have the opportunity to offer hope and compassion toward a random person around me. My family and I went to a fall carnival with some friends and let's just say, the place was packed as I am sure most fall carnivals are. There were little princesses, Star Wars characters, pirates, dinosaurs, you name it, running around with giddy laughter and excitement. In the middle of all of this was a man with a stroller. What was special about this man with the stroller was that there was tubing running from inside the stroller alongside it to the backpack hanging on the back. I happened to glance his way and the familiarity of that came rushing back. I could not see the sweet boy inside as he was covered by the stroller shade but I immediately recognized the set up. I pointed it out to my husband who offered a prayer of thanks that that is not where we are today. I told him I was going to go say hi. I walked up to the man and introduced myself. I was holding Wimberley and told him that I admired him being out in the craziness with a tube feeding going on. I explained that Wimberley was and still is a tubie baby and that I know how hard it is to be mobile with feeding a child through their tube. This sweet man thanked me for coming up and talking to him. He said most of the time he gets odd looks or lots of questions and it was nice to be acknowledged by a stranger in a purely positive way.

I don't know what his story is or exactly what he has been through but I was grateful to connect with him in that moment, grateful to have the perspective that I do and grateful to reflect and remember on how far Wimberley has come.

I think my point in writing this is that we all have a story, with bumps and bruises and beautiful moments along the way. What if our purpose is to connect and to use our stories to share and empathize and rejoice with others? And what a shame to let those moments pass as I have done many times before. Don't let those moments pass you by. I totally believe that sometimes, we need to be filled, we need to be loved on. What you may be going through may suck you dry of any extra effort to be able to give others, period. And that is okay. But sometimes, our goal is to fulfill others, to offer hope and connection.

I know that when I was in the thick of Wimberley's feeding issues, I would have laughed upon reading this blog and thought "You have no idea what it is like". And that is the truth. None of us really know what the person in line next to us at the store or the person we pass on the street or a close friend is truly going through. Sometimes taking life moment by moment is the best we can do. And that is okay. We are human, we are going to feel a myriad of emotions, not all that are warranted. It is what we do with those emotions, the actions that come from them, that is important.

My little mouse girl

Warrior Mom in the Making

I remember the moment when I became a Warrior Mom. I didn't know it at the time and I don't remember the specific date, but I remember the moment. My daughter had had feeding issues since she was two weeks old. We had started the acid reflux medication journey without much improvement. I stopped by my pediatrician's doctor office for a weight check since she still had not met her birth weight. At the pediatrician' office, she still had not made it back to her birth weight and was still having feeding issues. My pediatrician called the hospital and immediately sent us in for a swallow study. My husband was in meetings and I had to get there. I remember thinking "Put on your big girl panties and suck it up." So I did. But that was just the beginning of our journey.

The reason I realized I was a Warrior Mom was this sweet face, now 19 months



Looking back, that was the moment when I became a Warrior Mom. I wasn't putting on my big girl panties, I was donning my shield and my sword, equipping myself with the tools to fight for my daughter. Fight for her health, fight for what was best for her, fight the onslaught of random comments made that cut me to the core. At the time it was a small shield and a maybe a play sword because it was just the surface of our journey that continues today.

I first heard the term "Warrior Mother" from Jenny McCarthy's book. I thought it was a neat name for a group of people I never thought I would identify with. When I became one, I realized how much meaning the term has to it. In today's world, "Warrior Mom" is often a word used to describe a mom fighting for her child with special needs. Because it is a fight. Everyone who considers themself a warrior mom has a different story and a different journey. But we are all just the same. Warriors. Mothers.

Every mother has that fight in them and they fight for their child's needs. I have a friend who is adopting a little girl from China and her warrior mom status has already started before she goes to bring home her little girl. She is already researching on how to best make the transition for her family when her daughter comes home as well as what therapies and support she is going to need when she gets here. The point is that we are ALL warrior moms. We all fight for our children's safety, happiness and well-being. That journey looks different for everyone because God has designed each of our children to be unique. Some journeys are harder at the start, some are harder later on, and some never cease to be difficult. We are often pushed to a capacity we didn't know we were capable of.

When I was in elementary school I remember doing a research project on Joan of Arc. What I remember most was thinking how amazing it was that she was the youngest person documented to command an armies of a nation and she was a WOMAN. (Don't quote me on that - research could show differently now.) We all are equipped in our own unique ways to be warriors and to fight. I cannot imagine how alone and fearful Joan of Arc felt and some days that was exactly how I felt. Now I know my battle was much less scary than hers and I don't want to reach too far to make a comparison but she is just always someone who I have thought about over the years when faced with a tough decision because she made such an impression on me as a young girl.

 



Joan of Arc Painting by Rosetti

Every day I feel like I am adding an extra piece to my armor. Sometimes I feel like it is completed, that there is nothing more I could possibly add to my tool collection. But I'm wrong. Because warrior moms are like clay, constantly being molded so that we can be the best possible warrior for our babies. We are strong. We are resilient. Quite simply, we are mothers. And we are not alone.

Top 5 Things THIS Warrior Mom Has Needed to Survive

Being a Warrior Mom has taught me a lot of things about myself, about my marriage, about my friends, about life. It has also taught me a few things that I absolutely have had to have through this marathon. Let's face it, when you plan on running a marathon, you train for it. You study on how to train for it, you dedicate time and energy to reach that goal and you work hard for it. Some Warrior Moms know ahead of time that they are about to embark on a journey that will require more of them than they anticipated. They might research and have plans in place, but I don't think they will truly feel prepared to take on that marathon when the time comes. They adapt and figure it out, because that's what we do, but they most likely won't feel prepared.

Some Warrior Moms will have no clue that they are about to become one. It can change in an instant - with the birth of a baby, an accident, a sickness, a situation they weren't expecting. This is the category I fall into. And you better believe that at the beginning of this I absolutely did not feel prepared or equipped to "run this marathon". One of my daughter's doctors told me at our first gastrointestinal appointment that Wimberley's journey would be a marathon, not a sprint. At first, my response to that (in my head, of course) was "Says the doctor cheering her on from the sidelines when I have no clue what to do". My response to that now is different, more seasoned, more mature. Because I am in that marathon. Some miles look the same as previous ones we have encountered and I feel a little more equipped to handle them. Others are new and I have to start from square one, but having been on this marathon for a year now, I feel more equipped to handle it. I also need to say that the doctor who shared this with me is by far one of God's gifts to me through this journey. How I ended up with him is incredibly miraculous and he has literally helped me in more ways than he will ever know along with helping Wimberley.  But my point is, I've learned some key things I need during this journey, or during this marathon.

1. Community - Support from friends and family has been essential for our family. We feel blessed to have been surrounded by people to offer help and prayers along the way. My mom has helped in so many ways. When we came home from the hospital this past summer with an NGT, my mom would come over every day and help with household chores so I could focus on Wimberley and give time to my son (who had just turned two) who had a hard time with me being in the hospital with his sister for three weeks. I had friends purchase gift cards for us to help with gas or food during our hospital stay which was a huge blessing. I had a friend organize meals for us during that time and a dear friend who visited us several times. One of my friends went with me to many tests they had to run on Wimberley when Reid couldn't be there. It was so nice to not be alone. Leaders in our church visited and checked in on us. My sister and dad kept my son so my husband could still work. It was a group effort. I am so thankful for these relationships. Some people gave us time or help without asking and others asked what we needed. And I had to say we needed help. I was at my monthly IF table gathering recently and we were discussing how hard it is to ask for help sometimes. I find this to be true in many ways. But if you are in a position where you need help and you don't have a strong community around you or your community doesn't know how to help, tell them how. People want to help. It makes us as humans feel good when we can help others so helping usually is a gift on both sides. There are many verses about serving or helping others but my favorite is Matthew 5:16, "In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in Heaven."

2. Empathy - I used to use the words empathy and sympathy interchangeably. But there is a really big difference between the two. Sympathy is caring and understanding the suffering of others. Empathy goes beyond that in its emotional scope. Empathy is the ability to experience the feelings of others. In other words, walking through it with them because they too have experienced it. Sympathy is expressed whole empathy is shared. Empathy allows for the opportunity to build a deeper connection because of a shared experience. The closer we are to someone the easier it is to try and or yourself in their shoes. My husband lost his father a year ago and because I love him I can try to empathize and imagine what it is like to have experienced that. But at the end of the day, it is hard for me to truly understand the pain he feels because my father is still here. Being a Warrior Mom can feel lonely at times even if you have a ton of community supporting you. Having someone who can empathize with you is so important. Sometimes it is hard to find this. Social media allows for connections to be made more easily with online forums or support groups. I was lucky in this area. After my daughter had surgery to place her G-button, my sweet neighbor mentioned to me that there was another mom in the neighborhood whose son had the same thing. And she connected us. Meeting Ashley felt like a gift from God. We moved into our neighborhood after a previous building deal fell through and it literally felt like we were placed here for a reason. Ashley's son has a G-button for different reasons but the fact that we are tubie moms is there. It is a breath of fresh air to walk beside her in this journey, to share highs and lows that she has experienced. Finding someone who can offer empathy is so important. Seek it out if you don't have it.

3. Me Time - This is SO important in my life to help me keep sane. Before having my babies, I was a special education teacher and I loved it. Once I had my son I had the amazing opportunity to stay home with him after finishing out my last year in the classroom. Then I had the amazing opportunity to be in the classroom in a different capacity part-time. I loved having the balance because working is something I do enjoy. When I had Wimberley, me working part-time was not an option. She needed me home full-time. We are lucky that we could make that work even though it wasn't ideal. It was needed for her. But the myriad of doctor appointments, therapy schedules and effort to try and get her to eat would leave me drained at the end of the day. I wasn't the best me and it was hard to feel like I failed at being a good mother and a good wife. My husband and I agreed to help fix that. He had softball once a week and didn't always get the chance to come home after work. So we created a night for me to have "off". Sometimes I go run errands or go to the gym or sometimes I meet a friend for dinner or a movie. It helps me to recharge and to be a better me the rest of the time. The other thing I did to create time for me is to wake up early early to go to the gym. I meet a friend or two there and we work out together and this is huge for me! I am able to dedicate that time for me and get girlfriend time in too. Finding how to make this work for you and your family will benefit everyone greatly.

4. Faith - I can't say enough about this. Knowing my daughter is mine for a divine reason and knowing that she is a daughter of God and in his hands is a comfort and a blessing. This doesn't mean that it is always rosy and always perfect, but it does mean that it doesn't matter. At the end of the day, I will be given enough. Enough to get through that day or peace over her life. It doesn't mean that everything will go as I want or as I would plan but it does mean that we are loved and that knowing Jesus is enough. His plan is just and understanding it is not my job, but trusting it is. But I want to be transparent, there are moments when I cry out to the Lord in pain and frustration; there are moments when I feel guilty to have been consumed with my problems when others out there are so much worse; there are moments when I am so overcome with the goodness of his love for me that I cry holding my sweet girl. The reality is that I am not perfect in this area. I am weak yet He is strong. There are so many things I could be better at, but I am trying to grow myself in His image. And that is enough.

5. This leads me to Grace - I have to have grace for myself. God's grace is great and because of that, I am called to give grace unto others as well as myself. Grace derives from the Greek word charis which signifies favor, goodwill and loving kindness. Grace appears about 150 times in the New Testament. I am going to stumble, I am going to fall, I am going to question decisions I have made, I am going to agonize over decisions to make. And I am going to feel like an inadequate mother pretty much daily. Grace allows me to forgive myself and give myself room to make mistakes. Being given grace by others was also such a special thing to experience. There were times we had to cancel plans last minute or we couldn't attend birthday events or friend get-togethers because it was hard with Wimberley. We did not leave her with anyone and were exhausted from her daily care much of the time. That grace was a lifesaver. Knowing we would still have friends when we came up to breathe from such a tough season of life for us. Our families showed grace by getting together around our schedules and requiring little of us when we did. We should show grace to others around us because that is what we are called to do. But give those Warrior Moms, just a little bit extra. It makes a world of difference.

Meet My Little Warrior

Meet Wimberley. She is my little warrior. She is one tough cookie and she has taught me so so much about being a Warrior Mom. 

This tube covered up her precious little face during eleven weeks of summer of 2014. We were admitted into an intensive feeding program May 2014 after a scary visit to the ER for dehydration when Wimberley stopped eating. She was 10 weeks old when we entered the program and 13 weeks old when we left with her NGT (nasal gastrointestinal tube). 

Wimberley became the proud owner of a mini ONE g-button when she was 24 weeks old. She still has it today. These are two of the few pictures I have of her in the hospital before and after her placement surgery and brain MRI. It was so horrible that first night because she didn't want to be held; it hurt her tummy (the incision site) too much to bend it. It hurt my mommy heart to see her in so much pain and no be able to comfort her like I wanted to. It made my heart hurt for moms with babies in the NICU or babies who have multiple surgeries. Although it seemed like the longest day the day after surgery, it is a relatively easy surgery and the recovery time was short and sweet.

Wimberley is fascinated with her button and has started really playing with it more which worries us because we don't want her to pull it out. Here she is trying to help Daddy give her her medicine through her button. 

 

 

 

This is my sweet girl at her one year photo shoot. What a milestone it was for us. She still has her g-button underneath her dress. We love being able to see her sweet face and for her to be able to be more mobile and not restricted with the NGT. Oh, and those uncomfortable stares or awkward questions I would get out in public when she had her NGT have stopped because the common eye that doesn't know her story doesn't know the fighter she is. Stay tuned for more of her story to unfold.