My stress and anxiety is thru the roof so I decided I needed some time out of the house. A friend and I made a trip to hike Old Rag Mountain. Yes, the mother and woman in a household of 7 that hardly has time to breathe, let alone exercise - thought it would be a good idea to HIKE A MOUNTAIN! I did it though. The solitude was so rewarding, I felt alive, powerful, strong, fearless and free. I needed the crisp mountain air and burn of my muscles to ground myself back into my happy place. Standing on top of Old Rag Mountain was everything this mommy of a special-needs little girl needed.
I got home and I couldn't move. What in the HELL have I done to myself? My family laughs at me as I try to walk, or attempt the stairs. I moan and groan with every step. I hiked over 11 miles of one of the most strenuous mountain hikes in the state in exactly 5 hours. I am a warrior...... a dumb, aching, goofy, warrior.
Still though, our house moves in a fast pace. The family gave me Sunday off to do the hike but Monday morning was back to normal. Work at 6:45am, meetings, practices, we still have sports, dinner still needs to be on the table and nothing on our schedule allows for a tired, aching momma. All I wanted was sleep. I counted every hour on Monday to the moment I would be able soak in a hot bath and fall asleep early. I got into my comfy clothes and we ate dinner early. We did homework and read books early. I dressed the girls in their jammies early and then made my way to my bedroom. Heaven. My happy place. I was writing off anything and everything else I am responsible for taking care of this evening, because I am taking a bath and going to bed!
And then, my phone beeped. I hesitated to look. "Its probably just an email Ashley, don't look. It's probably nothing.. it isn't ANYTHING more important than a hot bath and your bed Ashley, don't look."
But then I looked.
"Any pointers on placing an NG-Tube? A friends 4mo just recently had one and pulled his out tonight and the parents are too afraid to put it back in"
If you were in my bedroom you would have seen the defeat sweep across my face as my head dropped to the floor and I cut the bath water back off.
I responded, "Absolutely. Do they want to call me? If they live close I will go help them if that is what they would like. My cell is: xxx-xxxx"
When the poor mama called me, I could hear the exhaustion in her voice over the phone. I remember the first time Annabelle pulled her NG-tube out at home. We were too scared to put it back in too and I asked our next door neighbor to come over and do it for me. Tube feeding is terrifying and you've never felt so alone and helpless as you do when you're home and are ill-equipped and medically uneducated to understand the ins and outs of tube feeding. Hospitals do NOT do nearly enough to educate the parents on how to care for a tube-fed child. We have learned 99% of what we know by making mistakes, troubleshooting at 2:30am, phoning a friend etc. One thing hospitals never told us though, was that the tube feeding world is full of parents just like us. Confused, frustrated, heartbroken, scared and lonely - we move together though and care for one another and each others babies as if they're our own.
I changed back into real clothes and made a trip to the medical closet in our house to grab some supplies. I remember when we were sent home, we had NOTHING to get us started. We didn't know which products were helpful and which weren't. We didn't have the right supply we DID need and we didn't know where to even begin. I grabbed a handful of all my favorite products for NG-Tube feeding and even a few fun things too, like Feeding Friends stickers, and headed out the door. I got to their house around 8:45pm. With a coke in one hand and medical supplies in the other.
They didn't have 1/4 of the medical supply they needed/deserve. The poor little baby's face was quickly on it's way to being raw from the tape and the tube they gave to take home didn't come with the right pieces for placement. I felt awful but SO grateful that I was there to help. All the things I packed to bring them were needed. The tape, the skin barrier, the ointments, adhesive remover, syringes, etc. Before we got started I shared some secrets for taping the tube down to keeping it secure. We talked about troubleshooting the tube and ensuring its placed correctly, the feeding pump and any questions they had. When the time came for us to place the tube, the momma left the room. I could see the heartbreak in her eyes and how her mommy heart just poured for her baby boy that was having to go thru all this :( It broke my heart more than I knew possible.. to see someone else wearing the same devastation across their face as I have worn. I wanted to take this perfect stranger in my arms and tell her it would all be ok. I could see how strong she was being but I could feel how broken she was for what was about to happen.
The little boys daddy stayed in the room with me to help. Daddy was the one in the family appointed to "learn how to place the tube and fix it when something is wrong". AK and I have assumed similar roles. We divide what each person can handle and who can do which part of all this the best. He knows the things that I cannot emotionally handle and I recognize the times that he cannot be present because it's just too much. It was comforting to see that balance in another home too. The daddy was also visibly concerned and worried, but he was strong and confident. No one spoke much, there just isn't anything helpful or enlightening to say when you're faced with painfully shoving a tube down an infants nose/throat.
With mommy in the other room and daddy holding down the sweet babies arms, we got started. I placed the tube in the opposite nostril than was he had just been using. It went into place without any issue at all. In fact, I don't know that placing a tube on Annabelle was EVER that easy. My hands were visibly shaking because I wanted this to go by so fast for the baby and his parents, I wanted to do everything right for them - I prayed my NG-tube placing skills were still on point from nearly two years ago!
After it was placed, the tube immediately dripped with gastric fluid because I forgot to close the end. Daddy picked him up and I began to clean the mess, "Im sorry about the mess! But, do you know what this means?"
Dad said with a smile. "It's in his stomach?"
"That's right! We're all done!"
We taped him up and I let his big brother pick out a super cute feeding friends sticker, he picked out the Lion (I believe) and I cut it out for him to place on his baby brothers little face to hold the tubey in position. Before I left I gave him a little kiss on his forehead and made the parents promise to give me a call if they have any questions or worries at all - I am happy to come by ANY time.
The drive home felt so fast, I forgot to turn on the radio.
I found myself smiling ear to ear and my heart bursting with love and joy. What an awesome feeling to have the skills, knowledge, experience and confidence in something that can help another family in such a way I could ease their worries and fears by my own experiences. I have seen and felt their pain and here I was, able to do God's work and take that away from them. My mind wasn't filled with all the things on my to-do list for the week, I didn't blink at the thought of all the running around I have been doing and I completely forgot how sore my body was from the hike. All I could think about is how strong, beautiful, honored and happy I felt in that moment. There is no way anything on this earth could have brought me down from that feeling.
I got home and walked up the stairs and back to my bedroom. AK had drawn me a fresh hot bath and greeted me with a hug. It was really late and I should have been tired enough to collapse, but I wasn't. All I could do was smile. He gave me a kiss on my forehead and told me how proud he was to have a wife that serves others at a drop of a dime. Likewise, I am proud to call him my husband.
When you realize God's purpose for your life isn't just about you, he will use you in a mighty way.
For years we have questioned why God was challenging us, putting us thru this hell, torturing our little girl and running our family thru the ringer. Little did we know that we would be where we are today. Just last week Annabelle saw a little boy at Chick Fil A with a trach, he said "mommy! He has a Tubey in his throat!" I said "yes he does Hunny, people can have all kinds of tubeys." Annabelle walked over to him and showed him her tube, she then reached for his hand and said "we are Tubey buddies" they exchanged a smile between one another that was such a connection, I didn't know a toddler could share! The dad smiled at me and I smiled back. There just are no words - I walked away in awe, as though I had just seen something miraculous happen between two kids that need one another in a life that certainly proves to be unfair at times. And here my daughter is befriending a little boy and taking his hand to make sure he knows he isn't alone.
Our family has taken a very very long time to get to this point, but we're starting to see just what this whole life / tragedy thing works. Would I have signed up for this? Absolutely not. Could I have ever found happiness and fulfillment in a way I am now? I don't think so. Annabelle's journey has shaped our family and our perspectives in a way we could have never done on our own. We are so thankful, we are blessed, we are honored for all we have been thru .. If it's purpose is this, to help others. To serve others. To relieve the burden and fear from another parent in the middle of the night. To remind another 3 year old that he isn't alone. If that is what this journey is about - wow. Just wow.
What a blessing and honor it is.
At the end of our lives, we will not be judged by how many diplomas we have received, how much money we have made or how many things we've done. We will be judged by "I was hungry and you gave me something to eat. I was naked and you clothed me. I was homeless and you took me in."
First...is that medical supply closet in your HOUSE?? Whew! Second, YOU were an absolute angel on earth for that family. What a blessing and honor for you. You were an answer to prayer!! ~Beth
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