Be Strong in the Lord: Play Ball!

Tuesday, June 6, 2017

Play Ball!

What a blessing of a baseball season! Nick and I registered Reece in rec baseball with so much anxiety. We had no idea how he would be accepted by the kids or parents. God certainly heard our prayers when He put Reece with the coaches he had and the teammates he played with. We could not have had a better experience. It still amazes me how far Reece has come. Looking back, it almost seems like the first few years of his life were a dream. Just today, my Facebook memory was from 6 years ago when we were at Shriners having his pins removed from his feet. And, here I am posting pictures of those little feet in baseball cleats. God is a God of miracles.

Before his first game...

Up to bat...

Playing catcher!

He got to hang out with some MSU baseball players at Super Bulldog Weekend. The coach got his name and Nick's parents' address and mailed him a ball signed by the entire team a few weeks later.

After Reece made it to home plate for the first time (a very big deal for him and us), his team signed the game ball and gave it to him. Yes, we cried. I took a video every time he was up to bat after that because I missed it. I'll have to weed through them and post the good ones at a later date.

He looks so grown up.

Being silly with his team while it rains during a game...

The sweetest teammates

They loved their tournament shirts the coaches had made for them.

This was after they won in the semifinals and were moving on to the championship game. Reece's face makes my heart swell every time I look at these pictures.

Reeceman missed playing in the championship game because we were in Disneyland (another post in itself), but he cheered the Kings on from afar. They ended up getting second place, but they still got a ring. (Which we think is hysterical being newbies to this whole thing. What happened to trophies?) He is super proud of it though, and we are super proud of him. After one of the games, I heard a lady ask someone behind me "Are you Reece's parents?" They pointed her in our direction, and she came up to us and said "I want you to know that I have coached softball and baseball for 30 something years, and Reece is amazing. He goes out there like 'so what? I'm going to kick some butt' and he does. Y'all have a done an amazing job with him, and he is a joy to watch." It's words like these that puts things in perspective for me and Nick. We let go of our fears and anxieties to let Reece do something he loves, and he ended up inspiring at least one person. I am so very thankful that God is continuing to answer my prayer for his little life.

I would be wrong not to mention the unbearable heartache we went through at the end of April. Our sweet kitty Nassau went downhill pretty quickly with kidney failure, and we had to say goodbye to him. He had stopped eating and drinking and was having accidents all over. He collapsed twice in span of two days, and we just knew he was suffering. Fifteen years he did life with us. Nick and I were married for one month before we drove to Clarksdale to pick up our Nassau. We had gone to the Bahamas for our honeymoon, so it just seemed like the perfect name. Nassau was with us through college, multiple moves, our miscarriage, and everything with Reece. How in the world could we let him go? It was one of the hardest things I have ever done. We were fortunate to find a vet service to come into our home, so that we could say goodbye to him there rather than he being scared in the vet clinic. I'm pretty sure my heart broke in two when I felt his little heart stop. We had him cremated, and he is watching over his beloved laundry room. We've gradually removed his things. His food went first, but the litter box with his little footprints in it just left the house this past weekend. We still find his hair everywhere. Nick even pulled one off of his shirt while we were in Disney, so we know he's still with us. In fact, we both still catch glimpses of him out of the corner of our eyes. There will never be another cat like him, and we are so very blessed we got to love on him and he on us for so many years.

Next post (hopefully it will be soon) will be all about Disneyland and San Diego! We've been some traveling people the last few weeks! Whew!

With love,

Beth

1 comment:

Anonymous said...: Yes, Determination is spelled R-E-E-C-E! Love, Aunt Debbie Cobb Garcia; June 6, 2017 at 5:46 PM

What is Escobar Syndrome?

This is all according to our geneticist.

Escobar Syndrome, or Multiple Pterygium Syndrome, is a form of arthrogryposis multiplex congenita. It is an autosomal recessive genetic condition characterized by excessive skin webbing, joint contractures, and scoliosis. Other features include intrauterine death, congenital respiratory distress, short stature, craniofacial dysmorphism, ptosis, low set ears, and cryptorchidism in males. The gene mutations are caused by transient inactivation of the neuromuscular end plate. In other words that are not much more clear, Reece did not start moving properly in the womb until his gamma receptor on his neuromuscular junction was replaced with the epsilon receptor (toward the end of the pregnancy). Severity varies significantly among families. Early physical therapy and surgical interventions can help the outcome.

For an even more detailed description read here.

So what applies to Reece? Well, Reece's features are as follows:

* Bilateral vertical tali in feet (surgery May 2008, January 2011)

* Knee flexion contractures (surgery May 2009)

* Hip contractures

* Mild scoliosis

* Short stature

(2 years, 9 mos: 32 inches)

(4 years: 37 inches)

(7 years: 45 inches)

* Short, webbed neck

* Cryptorchidism (undescended testicles) (surgery Feb.2009)

* Inguinal hernias (surgery Feb. 2009)

* Hypospadias (surgery Feb. 2009)

* Low set ears

*Ptosis (droopy eyelids) (surgery March 2009 and October 2013)

* Partial cleft palate (surgery March 2009) (fistula repaired October 2011)

* Wrist flexion contractures (surgery on right October 2010) (surgery on left June 2011)

* Radial and ulnar bones fused at the elbow in both arms with webbing and joint contractures (surgery on right elbow contractures via biceps lengthening and z plasty) May 2015)

* Thumb in palm (surgery on right October 2010) (surgery on left June 2011)

*Finger contractures

I have debated for a very long time whether or not to post all of this on here. It's very hard for me to sit here and list all of my baby's abnormalities. Plus, I don't want people looking at Reece trying to pinpoint every feature of Escobar on him. However, I'm getting more and more connected with other Escobar families around the world. I know that any information I find is very helpful, so I want to maybe help other families affected by this syndrome.

2 Corinthians 1:3-11

"Praise be to the 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."

Feel free to contact me at beth.barham@gmail.com.

Ephesians 3:20

All glory to God, who is able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think.

Reece's Medical Team

Pediatrician-- Dr. Sam Denney, The Children's Clinic, Flowood, MS
Hand and Upper Extremities--Dr. Allan Peljovich, Atlanta, GA
Oculoplastic Surgeon- Dr. Joseph Walrath, Atlanta, GA
Lower Extremities-- Dr. Jeffrey Sawyer, Memphis, TN
Opthamology-- Dr. Kevin Kosek, Madison, MS
Pediatric Pulmonologist-- Dr. Joseph Majure, University of Mississippi Medical Center, Jackson, MS
Neurology-- Dr. Amanda Witt, University of Mississippi Medical Center, Jackson, MS
Genetics-- Dr. Omar Abdul-Rahman, University of Mississippi Medical Center, Jackson, MS
Pediatric Dentist-- Dr. Kyle Reed, Dogwood Pediatric Dentistry
Plastic and Craniofacial Surgeon-- Dr. Joseph K. Williams, Atlanta, GA
Ear, Nose, and Throat-- Dr. Jeffrey Carron, University of Mississippi Medical Center, Jackson, MS
Gastroenterologist-- Dr. Sara Rippel, GI Associates, Flowood, MS

2 Corinthians 12:7-10

"To keep me from becoming conceited because of these surpassing revelations, there was given me a thorn in my flesh, a messenger of Satan to torment me. Three times I pleaded with the Lord to take it away from me, but He said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore, I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weakness, in insults, in hardships, in persecution, in difficulties. For when I am weak, then I am strong."

An Essay that Touched Me

I don't think that I am a patron Saint, but the words of this essay really struck something with me. It helps me to remember that God has chosen me and Nick to be Reece's parents for a very special reason.

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Tuesday, June 6, 2017

Play Ball!

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