Danny Boy’s First Loose Tooth

I was working at my desk this morning, when Matthew ran up to my office saying, “Mommy when do kids lose their teeth?”

The randomness of his question doesn’t surprise me. I am used to random, even bizarre questions. Remember, I’m a mom of 11- 8 of them boys.

There’s a lot of “randomness” going on in this house. 

“Oh, I don’t know. Between the ages of 4-6 I guess is when they first start to lose them. Why do you ask?” I replied.

“Because I was just sitting with Danny when he told me his teeth were falling out. I told him, ‘No sir!’ but then he showed me, and Mommy he has a loose tooth!!”

Loose teeth… why do they bring such a wealth of emotion up in me?

Little Boys Grow up

My oldest son is 27. I still remember the excitement over him losing his first tooth. He so desperately wanted it to fall out. His little sister was even eager to see it finally happening. I remember us trying every trick we knew to help it. It still makes me laugh as I think back to those younger years. Those firsts for me as a mom, and firsts for my little ones. The laughter we shared. They are precious memories.

So why was I melancholy today about Danny Boys first loose tooth?

Maybe it’s because I was also taking multiple calls for his upcoming surgery or because of the emails back and forth regarding his last surgery results. Maybe it was because I know this will be the last “first tooth” lost in the Wood family.

I don’t know.

I just keep thinking… he’s too little. I know. I know. He’s four, but to this momma he’s still my baby. It’s a conflict in my mind to consider him old enough to lose his first tooth.

I wonder, how can I make this “last” first tooth lost memorable? I will have to ponder that. Anyone have an idea they want to share? I’d love to hear.

It’s not like I haven’t seen a child lose a tooth before. In fact, to date, I have witnessed 200 teeth lost… that’s a lot of teeth. You’d think the newness, the specialness, the magic of it all would wear off… but it doesn’t!

For now, I sit hoping I don’t miss one single moment of these precious days. I hope it won’t fall out as he sleeps (like it has for some children). I hope he won’t be afraid like some of the little ones were at first. I hope it will be the most perfect first lost tooth experience… ever!

Is that goofy?

Maybe it is.

I just know I want to remember these sweet days forever and always!

Until our next chat,

Mrs Joseph Wood

A Time to Cry…

If you know me in real life you know that I’m normally the stranger that will cry with someone I see hurting. I’m the woman that walks up to you and offers to hold your crying baby while you shop. I’m the one who sees you struggling to put groceries in your cart and comes over to offer help. 

It never feels like an obligation, rather an honor, a divine appointment that God let me walk in on and be a comfort to someone else at that exact moment. 

Some of my sweetest and dearest friendships have grown from that single encounter. Others are memories that I hold dear often praying for the individuals years later as God brings them to mind. 

One of my most precious friendships grew from a “stranger” who brought me cheesecake when learning of my son who was born at 25 weeks and was fighting for his life some 22 years ago. Today, I cherish her and her entire family… and I know she loves me the same! 

And God continues to use strangers in my life…. 

Yesterday, we received news that Daniels aorta was enlarged. The doctor said that there was nothing that could be done about it, but to watch it. He said if Daniel was older he would say he couldn’t play or do anything strenuous, but Danny boy doesn’t do that anyway. Danny normally is always playing sitting down. 

Most of the time, I can forget that Danny boy has anything wrong with him. He’s a “rascal” according to his almost three-year-old niece who prays, “Dear God, please help Danny… that rascal” He’s a “buddy” to his three-year-old nephew who charges in the front door saying, “Where’s my Buddy!?”

Danny is the youngest of 11 children, 7 who still live at home, so he’s thought of pretty highly-everyone adores Danny! And how could you not? He’s tender, sweet, full of life, he’s opinionated, he lights up the room no matter where he’s at. He loves to cuddle in the morning and read books anytime someone will stop to read to him. He cries if he sees someone else get hurt and he’s braver than any other little boy I’ve seen.

A time to cry

Sometimes, I’ll be enjoying the simple moments with Danny Boy when the tears will just start  to roll out of my eyes onto my cheeks.

I stop myself from crying.  Today I do get to enjoy him, today is not the day to cry. 

When I get news like I did yesterday from the doctor, I handle it without any tears or emotion.

Looking back I ask myself, “Was I pretending or being strong?” I don’t know I have the answer to that.

I just know I can listen, keep my head on straight for those few moments, and ask the questions needed at the moment. I can walk to the car with a smile as I say good-bye to the sweet volunteers (normally receiving some sweet gift they have made for Danny and agreeing with them as they comment on how precious he is and how big he’s growing). I say good-bye to security, and the kind valet who are always there helping me with machines, car seats, our bags and reminding me that I’ve not lost my keys… they have them.

That’s normally when it happens.

I sit in the car…. and cry.

I have an 1 1/2 hour drive home and I can get all the tears out so that I can share the details with the children and support them through the journey.

Yesterday, I knew I didn’t have time to cry. I sent a text to my immediate family. Gave them the news and said, “Don’t call me or I’ll cry.”

I had a laptop to pick up from the Apple store a few miles away. I didn’t have time to cry.

But, I had a situation.

It was only Danny and mommy today, I didn’t bring any helpers.  Danny had an accident (something he NEVER does) and was now wearing a diaper with no clothes. I couldn’t take him into the Apple store like that!! I also couldn’t leave my laptop 1 1/2 hours away when I desperately needed the information off of it.

I sat in front of the store for at least an hour. Danny was now asleep. I came up with an idea! What if I called Apple and asked for them to send a manager to my car, I could give them my credit card and they could bring out my laptop? After a phone call, a manager from the store came up to the car. She began to explain to me that she couldn’t take my card for security reasons and they wouldn’t be able to assist me.  I replied, “Isn’t there some way we can make this work? I live 1 1/2 hours away. I don’t have anyone to help me, and the baby….. and then I started to cry.

I didn’t try to cry. It just happened… without permission.

The manager bent down by the car and said, “Are you okay.”

“No. I’m not.”

“Tell me what’s wrong.”

“I tried to share, but the tears kept coming. Then I caught myself… this is dumb. I am pouring my heart out to a stranger. I immediately apologized. This is just a laptop. I can always go home and send one of the boys back to get it another day… why am I letting this be the needle that broke the camels back?

I apologized again and said, “It’s just been a hard day.”  With tears she replied, “No it’s okay. I’m a mom too.” She then offered, and actually did pay for my repair and bring me my laptop free of charge. I told her I couldn’t let her do that. I had to pay her, but she wouldn’t accept it.

She cried with me, asked what Danny’s name was and promised to be praying for us.

I drove away humbled by the entire experience!

This morning, I’ve thought about how the world would change if we all took time to notice others like this woman did for me yesterday. Wouldn’t that be incredible?

I want God to give me eyes to see like that.

I know this woman taking time to invest in me, if even for that brief moment, will be something I cherish as God’s reminder, that He cares enough to send a stranger to cry with me.

Because there is a time to cry….

Ecclesiastes 3:1, 4 

For every thing there is a season, and a time for every matter under heaven:

A time to weep, and a time to laugh;

A time to mourn, and a time to dance;

The Holy Bible: English Standard Version. (2001). (Ec 3:1). Wheaton: Standard Bible Society.

A Time to Cry

Until our next chat,

Mrs. Joseph Wood

When Wishes Come True

For those of you that know our family, you know that our son Daniel was granted his wish from Make a Wish foundation. He was just getting over pneumonia and we weren’t sure he was going to be well. About 15 min before we were going to reveal his wish he sat on the living room floor with me and said, “Mommy I don’t feel good.” I replied, “Just a little bit more Danny Boy. You don’t want to miss seeing your wish come true!”

Danny Boy

There were TV interviews (see WIBW Ch. 13 video, Community Efforts Gets Daniels Wish On Track), along with many new friends and faces surrounding us. Daniel was overwhelmed as we walked outside to 75 people singing “I’ve been working on the railroad” He started whispering in my ear, “Back inside mommy. Back inside.” My dear Joe and I continued to encourage him, “Just a little bit more Danny Boy. You don’t want to miss this.”

Wishs Come True

As you look through the photos you can tell Danny boy didn’t feel his best, but he was feeling much better than he had the days before. The week before the event,  I had sat looking out the window as I held him, watching all the workers work so hard to make this wish come true. I can’t tell you how many tears fell from my face. I was overwhelmed by the love these strangers were showing towards my sweet boy.

I’ve had people ask me, “What’s it like when wishes come true?”

Let me share….

When wishes come true… you cry

Tears

When wishes come true…you feel very, very humbled by the love of others to make the wish come true

Community Love

When wishes come true… you feel as if the world has stopped spinning for the slightest moment and you simply breathe in all the details of the moment, praying you won’t ever forget it.

When time stood still

When wishes come true…you struggle to express the magnitude of your thankfulness

thankfulness

Thankful

New Friends

When wishes come true… you smile (a lot!)

Thank you to WIBW Ch. 13 news for this photo

Thank you to WIBW Ch. 13 news for this photo

 

Smiles

 

When wishes come true… you thank God that there are people who take time out of their lives to make the life of someone else better.

Precious Moments

While no one showed up that day with a cure for Duchennes, everyone showed up with the one thing that can cure the self-centered culture that we often find ourselves swallowed up by… selflessness!

Train Rides

It is organizations like Make a Wish that are making a difference, a real difference in our communities and country. If we forget to invest in the lives of others then I wonder if we’re really living at all.

Thank you to each and every person from the Alaska Railroad, to Car Star, Lowes Hardware, to Ash at Davis Electric, Trusted Choice, to, Theresa (who makes the most amazing cakes!!), to Erin at Erin Tomlinson Photography for capturing all these special family moments, to all our friends and family, and to the individual’s who donated so that Make a Wish could give our sweet son the wish of a lifetime!

Train Cake

To all the staff at Make a Wish we feel this wish journey made each of our lives better. Some people touch our lives while others leave an imprint on the heart that impacts our lives forever. Thank you for all the love and kindness you imprinted on us through this experience. You started as strangers and instantly became friends. Friends who share a bond with us that many do not know or understand. Thank you to Eric and Becky for being wonderful sponsors and loving on our son. Thank you to Melanie for laughing and crying with me. Thank you to April for dreaming big with us so that Danny’s wish could come true!!

The day after…

Danny woke up the day after the event, before his G-Tube was even unplugged and the machines were turned off, he said, “Daddy I need your help. I need to go check on my train.” As Danny boy started to crawl out of bed he said, “Mommy call all my friends tell them to come back!”

When wishes come true… you share them!!! Our family is looking forward to sharing Danny’s wish with others so that your day can be a little bit brighter too!

We hope there will be many children who experience the joys of childhood by coming out to the farm and joining Danny Boy on his train. I think that’s the best part of this wish… all the memories that will be made in the days past and the days ahead!

If you’d like to be part of making wishes come true, please consider contacting the Make A Wish foundation to ask what you can do to be part of events just like this.

 

Until our next chat,

Mrs. Joseph Wood

Is a G-Tube Right for My Child

If you’re asking, “Is a G-Tube right for my child?” then you’re not alone. I too asked that same question (many times) almost three years ago. I remember praying that God would bring someone to just confirm what direction we were suppose to go. I had no idea He would do so in such a beautiful way!

The reasons children need a G-Tube is as unique as each child.

Each G-tube placed has a child, a family, with a story. Each story with unique characteristics and yet strangely familiar situations.

Let me start from the beginning of our G-Tube story.

Our local pediatrician was dismissing the lack of weight gain as part of Daniel’s diagnosis of Duchenne’s. With each visit I would explain our feeding schedule, the exhausting three hours that baby would try to eat a tiny three ounces of formula. I would share how I had expectations of a playful baby by 9 months and yet he still spent much of the day in my arms sleeping.. With each visit, I was told,  ” Don’t  worry, it was to be expected.” The final straw for me was when they started making excuses on why his head circumference was smaller. Saying things like, “Maybe we measured incorrectly last time.”

I had to get some answers! Why wasn’t my baby gaining weight, growing physically, and progressing developmentally?

As I walked out of the pediatricians office, I had the local Children’s Hospital on the phone. I had met a woman when baby was first born, who worked in the Special Care Clinic. I thought I would just run these details past her and see what her thoughts were. With that phone call it seemed like a whirlwind picked our family up and ushered us into these life changing series of events.

We had an appointment with Multiple specialists, doctor visits, lab tests, swallow evaluations, nutritionalists, occupational therapists and a surgeon all in one day.

I clearly remember the Children’s Hospital Specialists and their patient demeanor as they verbally charged us with an urgent call for action. It was a very long day at the hospital, but finally the test results were back. Baby was aspirating. He was unable to swallow effectively for oral feedings. It was also discovered that baby needed an elemental formula that was already broke down so that he didn’t have to work so hard processing his food. A task that was proving difficult for him.

When one question was answered, many more presented themselves. The “why” question always lurking in the background without any answers that were good enough.

We went home from the hospital that day with an NG tube placed.

Quite honestly, I found the NG tube to be a nuisance though it did give our baby the ability to get the nutrition he desperately needed. Actually, it was almost like night and day. All of a sudden he was a baby who was awake and wanted to play.

Is a G-tube right for my child

Yet, we had this tape over his face, and a tube that he could easily snag and pull out, we had the multiple questions any time we went anywhere, “What’s wrong with your baby?” I honestly sat and played out in my mind how to answer that question quickly and kindly.  I didn’t fully understand how exhausting this had become until after the NG tube was replaced with the G-tube. I remember telling the doctor. “I know it might sound strange but one of the biggest benefits, after the fact that baby is growing, is that the G-tube is hidden. There are no more questions to answer from strangers every time we leave the house.” He smiled and encouraged me saying, “I hear that a lot.”

The issue with the NG tube is that it can easily lose the correct position. Getting too far into the gut or not far enough is an issue. You never know for certain it is placed correctly unless you do an X-Ray. There was more than one time, by more than one medically trained provider that baby’s NG was misplaced. Then, you have the issue with tape each time you replace it.  The skin breaking down because of the tape just looks/feels ouchy! The NG tube is a great temporary solution, but in my opinion, is just not a viable option for long term care.

God was so creative in how He provided me comfort to move forward with the surgery for baby. I was driving home from one of our many hospital visits. Our daughter, Beth Joy, had a family coming to look at a milk cow we had for sale. As I walked up to the porch I met this sweet woman with a smile that made you feel comfort immediately. I introduced myself, and shared where we had just been. Interesting enough, her daughter had the same surgeon and same G-tube surgery done just a few years before us. I was able to ask her questions about the process, the doctor, and then… the question I needed to have an answer for…. “do you regret it?” God used her reply and sweet words of comfort to give me a peace that my research never would have offered. I remember telling my husband, “It felt like God sent an angel to encourage me.” I’ve grown to know this woman as a friend online and in person. I know she’s not a real angel, but God led our paths to cross at the exact moment she was needed in my life. He is so perfect in all His ways!

In our situation, the G-Tube surgery was done along side a Fundoplication (Fundo). Not each G-Tube surgery requires this step in the process, but many do.

There are many factors as to how long the surgery and recovery takes. Baby’s stomach was so small it was hard for the doctor to do the fundo and place the “button”. This required a longer time on the surgery table. In fact, we were told that baby’s stomach was the size of a walnut. It is common for children to have small stomachs due to their lack to get the quantity of food into the stomach. It’s also common for them to have issues with reflex and not keeping feedings of normal quantity down.

The G-Tube helps overcome these obstacles. We slowly increased feedings so that the baby can now old down 160 ml (5.4 ounces) of food over 1 hour time.

We went home from the hospital with instructions, machines, special formulas, medication, and hope that we would see our son grow.

And grow he did! Today, three years later, he is an active little boy who is thriving. He still can’t eat/swallow enough to sustain himself orally. Yet, every once in a while he “puts it in his tummy”. He loves when he’s successful… so do we.

I have had to let go of the expectation that baby would be able to eat/drink again. It was just too frustrating to keep not reaching these imaginary goals I would set in my head. It wasn’t fair to baby or me. Expectations rarely ever do lead me to positive places.

Instead I just hold on to the hope that baby will do exactly what God wants him to do, exactly when God wants him to do it. I’ll be here for the journey.

Until our next chat,

Mrs. Joseph Wood

Is a G-tube Right for my Child

 

Hospital Days

Hospital Days www.amomentwithmom.com Encouraging and equipping moms in their ministry in the home. Today was another “hospital” day. Days when I leave the house by 6am and arrive for multiple clinics, labs, and x-rays. Days when I must wake baby from his slumber for a long 2 hour drive. Days when I am forced to face the reality of our situation. Baby is sick. Or if we say it like his medical staff says it, “Your son is a very sick little boy.” What do you even say to people who say things like that?

At home I can forget how sick he is. I forget that beeping machines, special formulas, medications, and cough assist machines aren’t just a normal way to live. I can forget that being adorable and happy doesn’t cure Duchennes. I can forget how big he should be, how he should be talking, and what he should be doing. Is it important for me to remember each day? For me, no. I’m not sure that it’s important or even healthy for me to remember day in and day out. I couldn’t bear that. It would cause me to concern myself about tomorrows that may never even come. I’m sure other mothers of terminally ill children have the same feelings. There are days when we must face the reality of our situation, but for the rest of the time we’re just busy living.

Hospital Days www.amomentwithmom.com Encouraging and equipping moms in their ministry in the home.

Today was a hospital day though. . .a day when reality is visually and verbally put before me. Days when I hear the word Duchennes more than I care to hear it. It seems like with each visit we’re given another diagnosis to put in our chart. Today, we were told that it was confirmed that baby does in fact have Rickets and Osteopenia, causing him to have “glass bones”. Baby’s liver is not functioning correctly causing his Vit. D to not be absorbed. Today, I was shown the X-rays from our last visit and the stress lines in each of his major bones (stress lines that can easily cause a fracture), I was asked to feel the lumps on his ribs, and exam the mis-shape of his forehead. I was told exactly what is happening, what they project to happen, and what their plan of action is to help. I asked 1001 questions and was given 1001 answers by a patient doctor who is a great part of our medical team for Daniel. It was just another one of our Hospital Days.

As always with “Hospital Days” we had lab work that includes rolling veins and lots of tears. Long drives home as I process all I heard and at times tears that can safely be expressed in the quiet of the 2 hour car ride home. There are several verses that have taken on a whole new importance to me. Verses such as 2 Cor 10:15 “take captive every thought to make it obedient to Christ” are critical for me to keep evaluating my thoughts and make sure they line up with the mind of Christ. However, today wasn’t a day of tears. It was more a day of realization that except for Hospital Days I don’t face the reality of our situation very often and you know what? I’m thankful for that! I’m thankful that the Lord has helped me learn how to make our life “normal”, to be filled with living, loving, and relishing each moment! I’m very thankful for that! I guess we have to have the hospital days, but I sure am thankful they are not every day.

Hospital Days www.amomentwithmom.com Encouraging and equipping moms in their ministry in the home.

Until our next hospital day I’m living in our own “normal” and enjoying every single moment of it!

With much love,
Mrs. Joseph Wood