Comfort in Christ -Transparency Revealed

 

 

Sweet Friends, I come to you this evening humbled, honored, and heartbroken. Humbled and honored for the opportunity to join a young couple in praying and trusting God will answer prayers. Heartbroken for the heartache they have experienced in their journey.

At the close of this post, I offered my contact information soliciting the opportunity for readers to "trade for transparency" and allow me to share in their struggles and rejoice in their answered prayers.

As I prayed fervently that God would use me, a reader contacted me poring details of the trials she and her husband were experiencing. I wept as I read her story. Literally wept. Substituting moans and tears as no words seemed to convey to the Lord my hurt for this sweet girl. Romans 8:26 says, "In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express."

Read her story and join me in prayer.

Hi Jennifer!

I will first of all confess and say that I have been "stalking" your blog postings for the past 4 months or so! My husband plays men's softball with a guy you went to high school with. He sent over your blogpost link to my husband to share with me for me to follow your journey with parenting a child with Down Syndrome. I will share just a tad bit of my story to allow you to see how relevant and all around great it is for me to read your posts. In a way, I am living parenting my child through you.

* Sounds weird I know, especially since you have no idea who I am; but just give me a second.*

 

My husband and I were married in 2009, after being together for a total of five years. We had been through the dating realm, the newly married realm, and after a bad case of birth control pills, I decided to quit taking them a year into our marriage. Just put them away, what happens happens, no thoughts or worries. We were both ready. After about 7 months I decided to go see my OB and just get "checked out" and told him of our "trying" and from past bad experiences with cycles and such I just wanted to be sure I was healthy. Of course, no doctor would see me about fertility until actively trying for one year. So I made my way back to a total of four different doctors after that year was up. Most told me to keep trying, some said I needed surgery - just a big mess. I was entirely too young for surgery! Surely there was another route. I made my way to a local doctor and he immediately diagnosed me with PCOS - Poly Cystic Ovarian Syndrome. This is a disease of the ovarian products which causes sometimes no ovulation at all. He put me on a drug called Metformin and said he would see me at the first of the year - this was the first of September.

The Friday before New Years..........POSITIVE TEST! We were so overjoyed! We spilled the beans right away, even though I couldn't get into the doctor until the following Tuesday. Things were great starting out. I had lots of ultra sounds, lots of pictures, and lots of growth progress..........until about week ten.
 

We were diagnosed with a growth on the baby's neck called a "Cystic Hygroma" which is found in most Babies with Down Syndrome. Some grow rapidly causing a miscarriage, some disappear.....it just happens with time. We left the doctor scared, upset, not really knowing how to feel; but full of faith that our God was in total control. We prayed, had the elders pray for us as well, and went on week by week in love with our growing little one.

The next week's doctor visits proved our God was working. The hygroma had decreased from a 7.4mm size to a 4.3! We were ecstatic! The doctors stated that these hygromas normally grow with the child if they are the bad ones. He suggested I take a CVS test to test the baby's chromosomes to see if there would be a deficiency with this child.

He is a local small town doctor that specializes in fertility; but the hospital is not equipped with a high risk NICU in case I needed to deliver early, or the baby needed an immediate surgery upon arrival. The ONLY reason I opted to go was for this reason. To see if I needed to be seen by a specialist.

 

Week 12 - I had an amniocentesis, and it was the worst experience of my life. They put you in a small room with these genetic counselors who pretty much tell you to abort your child unless you want to live with a special needs child or a child with multiple organ defects causing several surgeries to be required. You simply nod and listen to their whole spill and FINALLY after the torture, you smile and say NO THANKS, I'M KEEPING MY CHILD! God blessed me with him/her and God is in control and I am prepared for this battle. Then they shoo you in a small room with an ultrasound on the wall up high where you can see everything taking place. Then the doctor comes in with a huge needle, along with a numbing needle. They process the numbing shot through your entire abdomen, then follow up with the other "suction needle" which penetrates through the uterus to suction a small amount of the amniotic fluid for testing. Aside from the pain, you are watching a needle on the ultrasound screen go through your stomach to the tip of where the baby is to pull out this fluid. After I thought it was all over, and am filling up with emotions the doctor comes back in and exclaims that they did not get enough for all the testing required, and needed to go back in. I was horrified! All over again I was filled with pain, hurt, emotion, and opted to go ahead with the procedure for a second time, that way I could take the ultimate best care of myself and my new child! They told me the results would come back in exactly 1 week.

Week 13 - This week was sort of morbid, if that's the right word. Sort of gloomy, sad - just like a run through that I really don't remember. The doctor called as my husband and I were awaiting with anticipation a negative report and we would all be just fine. He then confirmed that our little baby was a GIRL, and she was diagnosed with Down Syndrome. My heart fell to the floor. Not because I was having a Down Syndrome child, but because of struggles I knew my little girl would face ahead of her. But, I picked myself up, thanked God for blessing me with a little girl, picked up the pieces, and took it in stride and kept smiling!

I spent the next few weeks seeking God, praying as much as I possibly could, and believing we would be the couple with the complete miracle package coming!

Week 14 - I went back to my OB and we discovered our little girl had developed a form of ascites, which is a growth of fluid all around the body. We had faith it would clear up, and we would be back with a good report, and took the bad news with the good and kept on keeping on.

Week 15 - The hygroma was major growth, as well as the ascites and my doctor didn't expect her to last through the weekend. As the news sunk in, my heart was gone. It literally felt like the walls were collapsing and my heart had been ripped out. I had no idea really how to feel. Just numb mostly.

Week 16 - I went back and found out the worst was yet to come. My little girl, my angel, ANNA KATE, had now developed heart failure from the ascites and it would be a matter of days until she went on to be in heaven. Can you even begin to imagine walking around with a pooch belly, not knowing if your child is alive or not? And constantly asked questions about your due date? At this point I sort of locked out the world. Focused only on God, and made the days pass as quickly as I could to go crawl in my bed to rub my stomach and spend all the time I could bonding with Anna Kate.

Week 17 - My girl was fighting hard, but at this point the fluid was all over her body and the doctor was astonished she had lived this long with me. But I am so thankful she fought for her Mommy.

Week 18 - On Monday, he confirmed no heartbeat, and all my emotions hit the fan. Especially since he had to give me induction medicine to actually give birth to her which would make it go into effect WEDNESDAY. Again, can you imagine walking around knowing your little girl has passed and you will be delivering her in 2 days? I was lost. I spent the days praying, reading my Bible, doing all I could do to get through what was about to be the hardest day of my life.

The day came and I was rushed to the ER with heavy cramps.....labor pains.....and I gave birth to my angel, Anna Kate, at 5:56 AM. She weighed .6 ounces. After that I was rushed downstairs for a D&C and don't really remember a lot about the day. I do remember my husband bringing me my little tiny girl to hold as I said my final goodbyes. To some it may not be so, but to me she was the most beautiful thing I had ever seen. Perfect in every way possible, and I will always cherish those moments. Our grandparents own a funeral home, so as I put my child in the tiny white box for her transportation to the funeral home, I wept, sobbed, but was thankful she was going with family and I knew she would be taken care of. We opted to have the funeral with family only, the same day, as soon as I left the hospital. I wanted to live all the emotions then...not wait 3 days. As I laid my hand on her tiny burial box I felt a gush of wind and knew it was God telling me she had entered the gates of heaven with Him forever.

The next months were extremely hard and I fought with depressions, sorrow, grief, the whole 9 yards but with God's help, each day got a little better. I knew God had taken her for me because my last most sincere prayer for her was that is her life would be free from heartache, surgeries, hospital visits day after day, and all around hurt. For me, that I could wait until it was my time to enter heaven to hold her again as long as she was healthy and happy.

I wanted to get back on the baby trail right away and since then we have had more complications. The fertility meds are piling up daily, and I see my doctor about every week. I hope I am close to on the right track and will soon have the joy of having another child.

****Back to you :)) I had a lot of negative people say through crowds, I can't believe she would have kept it, and such as that. So to see you raising this child with all you have, in God's will, is such a blessing to me. You believe God blessed you for a reason, he is watching you everyday, and he hand picked you to be the mother of a this child. Baker is an extreme blessing to me and I am so proud he is in the 90th percentile with his accomplishments! Thank you for living a Godly lifestyle and trusting in all God has for you. I wish everyday, God would have allowed me to keep my Anna Kate, but I know His plan is greater than I will ever understand.

I had searched for a way to get in contact with you and tell you how thankful I am to my friend for showing me this blog. When you posted the other day about if anyone needed extra prayers to contact you. Well here I am. I have just started another round of fertility meds and I am hoping and praying God will heal my body and help us through this struggle of conceiving again soon. It has been 8 months of trying again Dec. 4th and I know God has a plan, and it must be in His timing, but the struggle sometimes overwhelms me. I pray for your family and Baker often, and have even told Anna Kate about him as I visit her at the cemetery.

I hope I haven't overwhelmed you. But thank you! It is good to express so many feelings at one time. It sort of relieves my heart for the time.

In Christ,
Faithful Reader

 

Here is my prayer for her today:

Most Gracious Heavenly Father,

I come to you on behalf on my friend and my sister in Christ. Today, I pray that you give her peace, insurmountable peace. Peace that you are the Ultimate Healer and Provider of all our needs.

Lord Jesus, I am thankful for her honesty, her boldness to share her struggles, her fears, her faith. What a testimony of trust she has shared.

I pray that you answer her prayers of a child. I pray that you restore her strength and restore her spirit. I am trusting in your plan for her life.

In your Most Precious Name I pray. Amen.

 

Will you join me in prayers for this couple? If you have words of encouragement, or prayers for her, post your comments on the blog for her to read in the comment box below. You can post your name or post as anonymous.

Thank you. Thank you. Thank you! I am confident I will be sharing another story from her soon - a story of hope, of love, of God's faithfulness in her life.

 

"Praise be to God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."

2 Corinthians 1:3-4

It's my Party

There is something special about a birthday.

As a child, the "Birthday Fairy" would visit our house on the eve of my birthday to leave decorations and a happy. I remember falling asleep to my mom telling me the story of my birth. I had a pair of  outlandish "Happy Birthday" socks I wore every year on November 29 until I graduated high school. True story. I loved those socks. My mom would make our favorite meal and would finish off the day with a homemade cake with blue candles. Sometimes my birthday would even fall on Thanksgiving or Black Friday. The coolest.

 Birthdays were special days.

They were "me" days.

When I moved from my parent's house into a home with my husband, birthdays were just as extraordinary.

Brian Bell loves surprises!

Weeks preceding a holiday, he reminds me over and over and over,

"I know something you don't know."

Brian always makes my "me" day one to remember.

And today, today is one I will always remember.

It is etched in my heart.

Forever.

Happy 28th to me.

Today, I awoke to the sounds of laughter and smell of coffee permeating throughout my house.

Today, I got to spend the day with my two favorite fellas.

Today, I opened a Bloom Theory strap for my camera. Love.

My husband is the bomb dot com.

Today, I ate the world's biggest and best pizza for lunch. Hospital cafeterias have deceptively delicious grub.

Today, I rejoiced in wonderful news from Baker's pediatric gastroenterologist.

Today, I saw God answer prayers.

Today, I celebrated my birthday over dinner with my husband, son, and parents.

God is good.

Life is good.

This past year has been the most wonderfully blessed.

I can't wait to see what this year has in store.

Bring it 28! 

Trading for Transparency

I know God has chosen this life specifically for me. He has placed certain individuals intentionally in my path to challenge me, to love me, to encourage me. 

 

I know He chose me to be Baker's mommy, and because of that, I am forever grateful and forever changed. Being his mommy, I am privy to receive all of the blessings that promises. This is one of my life's greatest joys.

 

From his birth, I proclaimed, "God is worthy of all of the honor, and all of the glory, and all of the praise." I knew God would use our dream come true to magnify His name. So, I made it my mission to always maintain a sunshine and cupcakes with sprinkles demeanor. Fearful that anything less, would be discrediting God's sovereignty and evidencing a lack of trust in His perfect plan. In all things, I would smile. In all circumstances, I would remain faithful. In all trials, I would exude joy. In my exhaustion, I would feign withitness. In my weakness, I would portray strength.

 

Why do I feel like I have to maintain a facade of perfection and portray that everything is always hunky dory? Yes, most days are as warm, sweet, and syrupy as my Nanmama's decadent peach cobbler. But, some days are tough. Some days are tiring. Some days I fail far more often than I succeed.

 

Why do I choose not to express this? Why do I shy away from transparency and honesty and realness for the standard, "We're fine. I'm fine. Baker's fine. All fine." Yep, we sleep 17 hours a night, have a self loading dishwasher, and our refrigerator refills our empty glass with sweet tea instead of water. Wrong. Way wrong.

 

For some reason, I have convinced myself that for God to receive the glory, I have to give the churchy answers, plaster a smile Bozo the clown would envy, and never falter.

 

I surrender. I give. White flag flying. Soaring high.

 

What would it look like if we chose to live a life out from behind a mask of perfection? What if we shared our struggles? Not complained, but honestly shared. What if we gave others the opportunity to pray for our needs? How immensely could we both be blessed and be a blessing? What if we did these things and let God work in and through us? Our God is big, y'all. Real big. Bigger than the facade of perfection.

 

I dare you. I double dog dare you. Find someone this week, and be real with them. Be transparent. Pray together for your specific needs. And hold each other accountable. Encourage one another. Then watch The Almighty at work.

 

I'll go first. This week, I am overwhelmed. I am physically, emotionally, and mentally exhausted. I had imagined Thanksgiving break as a euphoric vacation. Brian would leave for work and place Baker in the bed with me where we would lazily wake up together. We would laugh, and talk, and coo, before finally making our way to the kitchen for a real breakfast. Not the kind I opt for on school mornings. A real, sit down breakfast. We would spend the day reading our favorite books, humming along to our favorite songs, dress our house for the Christmas holidays, gush about the food and family we were anxiously awaiting. We would revel in one another's company until Brian got home. Then, our little family of three would take a walk to admire the colorful landscape before settling in for the night.

 

Didn't happen like that at all. As I shared, we wound up in the Emergency Room on Saturday night. Baker was sick the entire week. We saw four different doctors, one radiologist, countless nurses, and three therapists in four days. I sulked. I cried. I was grumpy. I had the world's biggest pity party, but invited no one.

 

Why? Why did I keep this to myself for it to fester and grow? The devil was having a field day with me and I was letting him have his way. Why did I not confide in someone sooner? Let them pray for me, encourage me, share with me?

 

Finally today, I did just that.

 

In my small town, we have angels. Living, breathing, angels. Walking around on the streets. Shopping in the grocery stores. Littering the pews at church. 

 

One is disguised as a school nurse. She is a saint in every sense of the word. She was there for our child birth classes, she was there when I battled mastitis and thrush and was ready to cut those things right off my body, she was there for Baker's diagnosis, and first fingernail trim (I was scared to death to cut those baby nails). And today she was there for my meltdown. God chose her first to walk this path, to parent a special needs child. I am thankful for that. Today, this sweet angel cried with me, prayed for me, encouraged me, challenged me, loved me.

 

Let someone do that for you this week. Do that for someone this week. If you don't have someone who will pray for you, email me (jennifer.bell@live.com). I would cherish the opportunity to share in your trials and rejoice in answered prayers.

Giving Thanks

Our holiday started with a craft.

A bib for Baker's first Thanksgiving Dinner.

 

This was comical.

My stomach hurt from laughing as we tried to manipulate Baker's teensy weensy painted hand to resemble a turkey.

 

Memories made.

A keepsake I will forever cherish.

I am so thankful for this little hand.

Baker's First Thanksgiving

 

We headed out Thursday morning for Thanksgiving with Brian's family.

 

Baker with his great grandmother.

 

 

I love this little crooked grin.

 

Boy wants to go so badly.

  

Little Boy just couldn't hang.

Being the center of attention is exhausting.

 

Then we made our way towards Tuscaloosa to see more family.

 

 

 

 

The camera was put down here.

Picture taking played second fiddle.

 

I was too busy playing catch up with family.

And watching an intense bow competition between brother and sister shooting Tom the Turkey in the backyard.

And sampling Mom's sweet potato casserole - it's truly divine.

And seeing everyone love on Baker.

And watching family do what family does.

 

Our family has celebrated Thanksgiving with my aunt and uncle every year for as long as I can remember. We've gathered together in Indiana, Florida, and now Alabama.

 

Time with family is so sweet.

 

Enjoying a little Twas the Night Before Thanksgiving.

It's just not Thanksgiving without Farmer McNugget.

 

 

We have a tradition at Thanksgiving dinner.

We go around the table and give each person the opportunity to give thanks.

It's incredible to hear each person, from my seven year old cousin to my eighty-nine year old grandfather, celebrate life and give glory to God for His many blessings.

 

We all left the dinner table a little fuller.

Full stomachs.

Full hearts.

Full.

 

I am abundantly grateful.

Somehow, someway, each year gets a little sweeter.

This time last year, I was celebrating news of a baby on the way.

This year, I am holding my dream come true.

 

We may or may not have joined the crowds for Black Friday shopping at midnight in matching t-shirts.

Yep, my mom's cooler than your mom.

 

Brian and I drove home today and reminisced of the wonderful time spent with family.

Time with grandparents who are smitten with their new great grand.

Time with aunts, uncles, and cousins stretching the length of the map.

Time with family who love and give and bless.

 

"Count your blessings,

Name them one by one.

Count your many blessings,

See what God has done."

 

A few pictures courtesy of my fabulous aunt.

She's also a fabulous photographer, Mardi Gras hostess, navel orange grower.

She's pretty great.

 

Baker loved Madeline's hair. Who wouldn't?

Those curls are to die for!

 

 

 

My sweet not-so-little brother.

I love this kid.

 

Baker with his great grandfather, "Paw Paw."

This picture is so special to me.

 

 

 

Mama Called the Doctor

Doctors galore this week!

On Tuesday, we went to see Baker's pediatrician for his 6 month well-baby visit.

Yep, he's a hoss man.

Eighteen pounds, ten and a half ounces

and twenty-seven and a half inches long.

My little line backer.

Baker is off the charts!
Literally, over the 90th percentile in both weight and length.
Love this big boy so so much.



Just for comparison's sake.

This picture was taken exactly 6 months before.

This was during our stay in the NICU when Baker was a wee little five pounder.

Thanking the Lord for our little one who arrived so perfectly in such a tiny package, but has now grown into our most precious chunky boy.



Jessie Girl came to spend the day.

We love having her here!

It's a shame she doesn't love Baker any more than she does.

We will have to work on this.

Oh those rolls and those chins.

Delectable.

And those knee dimples.
I just can't take it!

Today, we went for both Baker's hearing test and Barium Swallow Study.

Baker failed his hearing test again.
I'm still not convinced it's because he cannot hear.
The audiologist as well as the otolaryngologist attribute it to the size of his ear canals. Because they are so tiny and filled with fluid from being sick all weekend, they could not get an accurate read.

We get to try again on December 27.

I need you faithful readers to become faithful prayer warriors for our baby's ears.

The doctors are concerned about his hearing, but are even more concerned that the size of his ears will lead to more severe issues in the future.

Also today, we had a Barium Swallow Study.
It is about as fun as it sounds.

At Baker's doctor visit on Tuesday, I mentioned the frequency with which Baker gets choked while feeding.

While he clearly eats just fine, as evidenced by the scale, there are some other concerns that led us to the radiologist for this test.

We arrived at two, with all of Baker's feeding tools in tow. We brought spoons, bottles, breastmilk, formula, sweet potatoes, sippy cups, cups with straws. Baker had a feast right there in radiology!

Suited him just fine!

As he drank the yummy goodness, I held him in front of the x-ray machine for the specialists to see how it moved through his system.
This was incredible to watch!
Little Bit is so wonderfully made.

After chowing down on the grub and Barium Phosphate,
they took three x-rays - one every ten minutes - to monitor how the Barium moved through Baker's bowels.

I am looking forward to the results - as they will tell us a number of things about Baker's eating, digestion, and even give some good indicators for speech.

Tonight, we celebrate no more doctor visits until next week!

While I am thankful for Baker's doctors, today I am thankful that we don't have to see another (Lord willing) until next Thursday.

It's Turkey Time!

Blow out the Candles

We're celebrating this cowboy's birthday today.

 

I found this little gem the other day.

I love it so!

It was taken 10 years ago right after Brian and I started dating.

He was 18 years old.

 

That's right.

The hubs is celebrating his 28th today.

 

I got to do something I have never done before - buy a birthday card for Brian as both a husband and a daddy. How much fun Baker and I had rummaging through the cluttered shelves of Hallmark searching for the perfect "from your son" birthday card! There weren't many from which to choose, so Baker settled on a superhero one for the man who is his hero indeed.

 

I love getting to celebrate birthdays with this man.

I love getting to celebrate Tuesdays with this man.

Everyday with him is a celebration.

 

Happy 28th Birthday, Brian!

Baker and I love you!

Unlike Any Other Weekend

It started out as any other weekend.

I celebrated its onset, as it meant the start of nine whole days at home with my littlest turkey, the promise of good times ahead with crazy aunts and uncles over the holidays, too much sweet potato casserole, and scouring catalogs to make a detailed itinerary with Mom and Jess in hopes of an epic Black Friday.

Brian, Baker, and I headed out of town Friday night to do some early Christmas shopping and birthday celebrating. My husband turns 28 tomorrow, and he always gets a new pair of cowboy boots to help him step into a new year in style.

Too corny?

Yes, I agree.

A blast was had.

Time with these Bell boys never disappoints.

It continued like any other weekend.

Brian headed out early Saturday morning to try to stick a big one. I get this text as he's hunting, "I just saw the biggest deer I think I've ever seen."

Have you ever seen Father of the Bride Part 2? You know, after several sleepless nights with Annie and Nina threatening to go into labor, George takes the two sleeping pills and Franck says, "Bye, Bye George, see you next Tursday."

Yep, except for here it reads, "Bye, Bye Honey, see you next Spring."

The boy loves the woods, watching the sun rise and God's creation come alive.

And talks daily about Saturdays when he can take Little Man clad in camo as his hunting buddy.

Still, any other weekend.

My mom drove over to spend the day.

She will see us Thursday but you well know those Nanas - they love their grands.

I was pretty excited about seeing her as well.

We visited, cooked, cleaned, did some serious baby snuggling,

and planned a killer Thanksgiving menu.

Just like any other weekend.

During all this time, Baker was the ever-sweet little Baker. He did a lot of grinning and laughing, sided with his daddy to present a stellar case for a new John Deere, blew kisses, wrapped his Nana around that finger a little tighter.

He was a little snotty, his cheeks were a little rosy, he had a little cough, was a little sleepy. Not sick, not fussy, but a little different.

By Saturday night, Baker was barking. He sounded quite like a seal. His nose was running and he started wheezing. We did a few breathing treatments and said a few extra prayers for his body to rid itself of this ickiness.

These symptoms escalated as the night progressed. His wheezing got so bad he couldn't catch his breath.

He gave me a "mommy help me" look, and in my helplessness, we loaded up at 11:56 for the Emergency Room.

Not like any other weekend.

At the front desk, we bypassed all the typical paperwork. Fortunately, insurance cards can wait when your little one isn't breathing well. They did the typical weighing, asking about symptoms, current medications, and then showed us to our rooms.

During the next four hours, Baker had a chest x-ray, RSV swab, a breathing treatment on steroids, shot, and prescription to carry us through the next few days.

Longest.Four.Hours.Ever.

We left that night yearning for our own beds, and longing for Baker to be well again.

Fortunately, Baker does not have RSV.

He does have bronchitis, an upper respiratory infection, and croup.

It turned out unlike any other weekend, and like none I want to have in the near future.

Being a mommy is the most joy-filled adventure, but sometimes it's also the scariest.

Baker is slightly better today.

He got to skip therapy, and do a little extra sleeping and cuddling with Mommy and Daddy since both were off work.

I am counting my blessings.

Today, I am thankful for doctors, nurses, and respiratory therapists who know much more than I do,

I am thankful for a husband who is alongside me for this incredible journey,

I am thankful for sick days so I even more appreciate the well ones.

Favorite Things Friday

 

Favorite Thing Number One

 

This kid.

His daddy dressed him for school.

Can you tell?

Carhartts and a Bama beanie.

Yep.

Total hubs move.
Favorite thing about my Friday and most everyday.

 

 

 

Favorite Thing Number Two

 

Little Bit and I will be out of school all next week.

I can hardly contain my excitement.

One entire week at home with my little!

Did I mention I am excited about this?

 

Favorite Thing Number Three

 

They call my boy the "Preacher Man" at school.

All day long, the swing as his stage, he preaches his sermons.

To his friends. To his teachers. To anyone who will listen.

The hand gets going,

The words start flowing,

And like any Baptist preacher, not eyes on the clock, growling stomachs, nor fidgeting from the audience will deter him from speaking what's on his mind.

 

I love it.

They said he might never talk.

And my boy doesn't stop.

 

Favorite Thing Number Four

 

This season of giving thanks.

I plan to do a post closer to Thanksgiving,

but I am bursting with gratitude right this very minute.

 

I opted not to do the thankful posts on Facebook,

instead committing daily to telling those I love the most how thankful I am for them.

 

Today, I am thankful

that God is reigning on His throne,

that I am saved by grace,

that His Word breathes life,

that I have a husband, my best friend, who makes me a better person -

and he's smokin' hott too, y'all,

that my Baker has made my dream of becoming a mommy come true,

that my family, my oh so precious family, loves me in spite of my daily failures,

that my friends use group texts to make us feel like we all live in the same city instead of being scattered across three states,

that I have a job where I get to live out my passion of educating children

and their teachers,

that I have clothes to fold, a bed to make, and dishes to unload,

that I have a warm home filled with precious memories.

 

"Give thanks to the Lord, for He is good; His love endures forever."

Psalms 107:1

 

Happy Friday, folks!

May this day be filled with all of your favorite things.

A Very Merry Un-Birthday

Happy Half Birthday, Baker Bell!

 

We celebrated our little one's six month birthday yesterday.

 

Honestly, when I picked him up out of his crib Sunday morning, he was a little heavier. His crib was a little smaller. His six month clothes were a little tighter. He held his head a little higher. He talked a little more.

 

My boy's a growing.

 

There were candles and songs, laughs and giggles, celebrations and gifts.

 

It's hard to believe Baker is already six months old.

There are times I feel like he was just born yesterday, and other times I cannot remember life without him.

 

One thing is for sure, there hasn't been another six months where I have experienced the all-consuming love that has come with being his mommy.

 

Before Baker was born, I bought those cute little month by month stickers off of Etsy. I had every intention of doing the cute little photo shoots monthly to show how much he changes.

 

Epic mommy fail.

 

I captured months one and two. Then month three, we were at the beach, and I'm not really sure what happened with months four and five. And month six, well, I'm already a day behind. So, disregard his attire and focus only on the most precious half-birthday babe.

 

 

Happy Day, Baby Boy!

 

Happy, Happy Day!

 

 

...and their Answers

In my previous post, I shared my love of questions.

There are a few questions that I especially love to answer: questions about my little.

I am by no means an expert on Down Syndrome, but in these few short months, I have tried to research and learn as much as my little brain can hold to provide the best care for Baker.

 

Here are the questions I referenced...

 

How is therapy?

How often are you going each week?

How is Baker tolerating one-hour sessions?

What is he working on in physical therapy?

What are Baker's occupational therapists' goals?

What manipulatives is he using in therapy?

How is he eating?
How is his health, especially his heart?

What are your struggles right now?

 

And here are their answers broken down by topic...

 

Therapy

 

Baker attends two 30 minute sessions of therapy twice a week for both occupational and physical therapy. Many of the skills he is working on in one overlap in the other. In addition, he also has a teacher through Early Intervention that sees him once a week. She works from a similar list of objectives, but incorporates a lot of reading, singing, and sensory recognition as well.

 

In physical therapy, his therapists are working diligently to teach him the skills and provide him with the muscle memory necessary for sitting up. His previous goals of holding his head up and rolling over have been mastered! To do this, he is spending more time on a wedge/incline, Bumbo and bouncy seats, and the exercise ball. His therapists still encourage tummy time and time spent sitting up with our assistance. It is important that he learn to associate the floor as a source of support. This is necessary for sitting, standing, and walking.

 

This week, he did something incredible in PT - when he started to tilt to one side, he braced his body by using his hands for support. This is a huge milestone for a child with Downs! We had a throw-down celebration right there in Therapy Room 1!

With Baker, we find ourselves celebrating a lot!

 

In occupational therapy, his main goal right now involves reaching for items, holding on to them, and releasing them. The manipulatives for this objective are toys, toys, and more toys! Anything bright and loud makes the toy even more appealing to Baker and useful for accomplishing this task.

 

This has been a goal that I have been able to watch him reach incrementally over the past few weeks. It has been amazing to see his strength and determination. He is such a little fighter. At first, he couldn't make his arms do what his brain wanted, but slowly, he has taught his arms how to extend forward and grasp the desired object - most often his mommy's lips, his daddy's beard, or his elephant "phant phant" that hangs from his car seat. To see the drive Baker exhibits to overcome a task that is too difficult is such an inspiration.

Therapy is hard, hard work disguised as playtime.
Who can argue with that?

 

Therapy is a learning session for Baker, obviously. But more than that, it is a time for us to learn how to help him accomplish these developmentally appropriate objectives. If he was only to do these things in therapy for 2 hours a week, he would be lagging far behind his "typical" peers; but Brian and I devote ourselves to our son, and his development - we study, we observe, we mimic, and Baker wows in response!

 

Each week, we are able to go into therapy with a praise.

Something new he has done.

One more thing to check off of Peabody's Developmental Motor Scales Analysis.

Go Bake Go!

Eating

 

The kid's a machine. Seriously.

 

As I was reading our many resource books, a commonality shared by each was that a child with DS typically has difficulty feeding. We are so thankful that Baker has no problems eating - he must take after his daddy!

 

As a newborn in the NICU, he was tube fed for the first few days of his life, then we transitioned to nipple feeding, and finally I tried breastfeeding. He breastfed on and off for the first 8 weeks of his life. Due to hypotonia and familiarity with the bottle because of his time in the NICU, I was not very successful getting him to latch on. Since then, I have been exclusively pumping, and supplementing with soy formula. He is currently taking about 5 1/2 ounces every three hours. In addition to the bottle, he has accepted spoon feedings with ease. He eats oatmeal with either apples or bananas for breakfast, and has vegetables at lunch and dinner. So far, he's tried peas, carrots, squash, and green beans.

 

Verbal Skills

 

Baker is a chatterbox! I can literally hear him talking as I am typing in the security code to enter his school. I love it! He oohhs, coos, and squeals.

Everyone talks about how much he talks!

 

He is not currently in speech therapy, but we are doing many things at home to be proactive with his speech: we encourage him to mimic vowel and consonant sounds, make kissy faces, create different shapes with his mouth, stick his tongue in and out, drink through a straw (this is something we've just begun), blow bubbles with his mouth, and manipulate his tongue in various positions.

 

To be more specific, we don't have designated therapy sessions at home, but we are very intentional about incorporating these things into our day. It has become natural for us - whether we place a toy he must reach for on his high chair, or we sing a call and response song with him as we are preparing dinner, or we sit with him on the floor encouraging stability and strength. Just like hour long therapy sessions twice a week, and frequent doctor visits, this is not a hassle, nor is it an inconvenience, it's just something we do. Like you would roll your daughter's hair or make your son his favorite sandwich for lunch.
 

Something we love to do to help our son surpass the world's expectations of him.

Health

Baker is in good health.
The only medication he takes is a supplement - Vitamin D. And the occasional gas drops. Those things are liquid gold.
He has a nebulizer (breathing machine), but we only use it on an as-needed basis.

We are monitoring his vision, hearing, bilirubin levels, and heart.

Baker is both farsighted and has astigmatism. We will visit his pediatric opthamologist again in April to reassess this diagnosis.

He failed his hearing test in August, but I am sure my boy can hear. Make that absolutely, positively, convinced he can hear - he perks up when I pop the cap off his bottle, grins ear to ear when I turn the bath water on, and bounces up and down when his daddy pulls his truck into the garage. Nevertheless, we will go back to reevalaute this in a few weeks.

Baker's bilirubin levels have been elevated since birth. Many children are born with jaundice. Normal range is 0.5-1.0; Baker's was over 9 at birth. We are now down to almost normal range, but it is still something a pediatric gastroenterologist oversees. We go back on November 29 for bloodwork to check on this. I can't think of a better birthday present for me than a healthy diagnosis for my sweets.

Lastly, his heart. This is something we have been monitoring via ultrasound since preliminary bloodwork indicated there was a heightened chance of Baker being born with Down Syndrome. He was born with a PFO on his heart. As you will read here, this is something that does not require treatment, and is not a source of concern for our doctors.

I daily thank the Lord for Baker's health.

 

Struggles

 

I'm going to try to be honest here.
 

If I were to say I am not struggling with anything, I would be dishonest.
But, while I try to be open and honest on here, there are some struggles
that I choose only to share with my husband, or my mom, or my small group of girlfriends.

I hope you will respect that, and instead of praying for a specific area of weakness, you will just lift us up.
God knows our needs.
 

I struggle with discerning God's plan in all of this. How can I use my platform as a wife to Brian, mother to Baker, child of Christ to bring honor and glory to Him.

 

I struggle with the future.
What's to come?
Baker's education, his mental and physical abilities, his health, and so on and so forth.

Jeremiah 29:11 states,

"'For I know the plans I have for you,' declares the Lord. 'Plans to prosper you, not to harm you, plans to give you a future and a hope."

A friend in Sunday School also shared a verse from Isaiah today,

"'For my thoughts are not your thoughts,

 neither are your ways my ways,' declares the Lord.
'As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." Isaiah 55:8-9
I read that and I hear those words, and my struggles seem trivial.
God has plans, thoughts, and hopes for our Baker boy, and that's enough for me.

I will try to do another Q and A in a couple of months as Baker grows and progresses. In the meantime, ask and I will tell. You know I love talking about my little bitty.

In the words of the wise Porky Pig,
"That's All, Folks!"

Questions

I love questions.

Always have.

I have been told the first word I uttered was "why?" and as a child strived to reach a quota of using this word twenty-eleven gazillion times per day.

Drove my parents nuts!

I can totally relate to this kid.

I am inquisitive by nature, and am drawn to people who share this attribute as well.

I want to know details, the inner workings of everything.

I am a researcher. A question asker.

I walk into the doctor's office with a list of questions and do not leave before an answer is written beside each.

This clearly makes me the unanimous pick for Favorite Patient Award.

Ha.

This weekend, we had the privilege of watching the Bama game with some dear friends. Mallory, who I have posted about before, was dying to get her hands on Baker. I am so ashamed that I didn't take a single picture. I was so busy catching up with my favorite newlywed and enamored with the heart-attack-inducing football game.

As we were talking, I was innundated with questions about Baker -

How is therapy?

How often are you going each week?

How is he tolerating one-hour sessions?

What is he working on in physical therapy?

What are Baker's occupational therapists' goals?

What manipulatives is he using in therapy?

How is he eating?

What are your struggles right now?

MPC, I love you for this!

So many people dance around the subject of Down Syndrome, and are scared to ask specific questions.

Or maybe don't know the questions to ask.

I completely understand this trepidation.

Please know you are not going to offend me by asking questions.

This is no longer a topic that scares us.

We talk about Baker. And we talk about Down Syndrome.

In fact, I know this surprises you greatly, but Baker is my favorite subject to discuss!

We ask questions about Baker. And we ask questions about Down Syndrome.

This is a part of our everyday.

And we are loving every minute. And we love sharing it with others.

Questions I often get typically resemble "How's Baker?"

I have such a difficult time answering this question without inviting them over for coffee and crumpets so I can answer this question in its entirety. When one asks, "How's Baker?" I want to tell them everything about him - how he's the most precious thing in my world, how I have fallen in love so hard and so fast, how he loves all music, but especially Kenny Chesney's Hemingway's Whiskey, how he loves when I read Pout Pout Fish in my silliest voice, how he loves bath time and pretends he's a fish flipping his fins this way and that, how he wants to be held by his mommy all the time, how he wants to forgo sitting in favor of standing, how he now scoffs at a bottle of formula but tackles breast milk the way I devour a Sonic Cherry Limeade during Happy Hour.

But instead of all of those specific details, I opt for a scripted, "Oh, thank you for asking. He is doing so well and we are so in love!"

But not my Mal. 

My sweet friend questioned us for the nitty-gritty details, and I am so grateful.

Although, she may have regretted it after I flooded her living room with talk of Baker this, and Baker that.

As most parents are eager to gush about their children, I love talking about my Baker Boy! This blog has given me such an incredible outlet to share our journey with others. Email me with questions. Post comments on the blog. I will respond. I want to respond - especially if you have found this blog because you are an expectant or new parent of a child with Down Syndrome.

Forget the adage "Curiosity killed the cat."
 And ask away, friends!

Favorite Things Friday

Oh, sweet Baker,

how we love you.

More today than yesterday, and the day before that, and the day before that.

You are the most precious gift.

Your daddy and I are learning to love in a way we never knew.

It's amazing how much more we recognize the love God has for His children now that we have you.

With each day, you teach patience, strength, and devotion.

You provide us with unspeakable joy.

More than words, to the moon and back, with all the love in our hearts,

oh sweet Baker,

how we love you.

 

We love the dimple in your knees.

Truly.

Honestly.

This little dimple slays me.

I love to kiss and it hear you giggle in response.

Who knew fat could be cute.

But, little one, you have made it the cutest little leg blub I ever did see.

 

We love celebrating firsts with you.

This week, we celebrated your first Halloween.

You were the most precious little giraffe.

We enjoyed dressing you up and parading you around to your adoring fans.

 

 

Baker Man, you are loved by so many.

One day, you will see just how many lives you have touched, and just how richly blessed our family is to have the love, support, and prayers of such wonderful ones.

 

This week, you have started reaching for us.

Reaching. For your mommy.

I can't take it!

And touching my face.

You love to touch my lips, and rub my cheeks, and play with my hair.

And earrings, you love your mommy's earrings.

You can't quite figure out your daddy's beard.

You get the funniest face when you rub it.

I hope I always remember these priceless moments.

The way you anticipate my kiss and inch your cheek closer and closer still to my lips,

the way you arch your head back when you hear your daddy's voice behind you,

the way your head tilts and your mouth opens slightly when you are exploring something new,

the way you fold into my arms when you are ready for your nap,

the way you smell - oh, I could bottle it,

the way you turn ever so slightly in your slumber and place your hands together angelically underneath your sleeping face,

the way you mimic every sound I make,

the way you sing with me all the way to school,

the way you hold my hands to pray before we eat.

 

 

I am taking it all in.

This mommy thing is good stuff.

Good, good stuff.

 

More than words, to the moon and back, with all the love in our hearts,

oh sweet Baker,

how we love you.