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.