Grieving Perfection

This is my Christmas post. It is long; it has a point so please stick with me…

Perfection is the name of my game. I am a bit of a perfectionist. When I do something, don’t just want to do it well, I want it to be perfect. Just ask my parents about learning how to ride a bike. Or ask Jeremy (and his father) about me water skiing or snow skiing.

This time of year brings out the perfectionist in me.

I am on a mission to find that perfect gift for everyone on my list. I will search and search until I find it.

Putting up Christmas decorations takes me forever. I sort things, move them and move again until I find the perfect spot for each decoration. When it comes to the Christmas tree…well don’t mess with me. This was the first year I did not pick out the tree (gasp!). Jeremy, Carter and Luke went. Jeremy asked me many times if I should go and he stay home with Brayden but I told him to go. Jeremy made me promise that I would not be upset with their choice (in case you were wondering, it is my favorite tree ever). Jeremy suggested that we all decorate the tree together (another gasp but this time bigger). I love my children, I want to have Christmas traditions but decorating the Christmas tree…it is my happy place of perfectionism. I spend hours putting things on, I have a method in which to put things on, I stand back and adjust, I walk by, I adjust, it has to be just perfect.

Every giving birth to my 3 sons and each time the doctor handed them to me; all I could think was perfect. They were perfect. They had all had the most perfect little fingers and toes. They were breathing and crying. I love them. Perfect.

Then a few days after Brayden was born I came face to face with loosing that perfect baby. What did they mean my baby was not perfect? He was broken? How can that be, he looks perfect?

Letting go the idea of a perfect child is like grieving a loss. I am no way comparing it to actually losing a child. It is grieving the loss of the perfect or ideal child.

A book that was sent to me after Brayden was born and describes this feeling:
When our baby was born we lost something we were already in love with-our idea of what [he] would be. No baby could ever completely fulfill that idea or be that fantasy, but most babies approach or overlap our dream baby…A child with a disability was not in our picture at all, except maybe as an occasional fear. We who have a child with a disability lost not only our fantasy baby, but our reliance on having a normal baby…It makes our heart ache. - Changed by a Child

There is no manual for this kind of grief. Grieving perfection, or at least the idea of it. How do you deal with a severely disabled child? My perfect child is being stripped away little by little with each problem that arises. For months we left specialist offices with more bad news and a list of things he more than likely will not be able to do.

My grief does not come all at once and it is not frequent. It comes in those silent moments. It comes after another doctor visit, when sitting in the car trying to absorb all the information that was just thrown at us. It comes after a long day of seizures. It comes when I feel helpless. It comes when I watch him sleep. He looks so perfect but he is not. He looks like he should be a normal healthy child. He is so broken. I feel so broken.

I have my moments of grief. It hurts. Sometimes I feel like I cannot breathe but those times are rare. We love Brayden, we are thankful for him. He is broken but to us, he is perfect is his own little way and perfect for our family.

At times the idea of grieving the loss of a perfect child felt vain, almost silly. I know that not one single child is perfect. Not my other two boys. Sorry to say not any of your children are either. We are all broken. Some more broken than others; whether it be physically, emotionally or spiritually.

There was only one baby that was born perfect, Jesus. He came to this earth perfect. He came because we are not perfect, we are broken. He came to save us from this imperfect world.

For Christmas we can celebrate His perfection.

The Bible tells us that Jesus was not an ordinary baby. In fact, this baby was the God of the universe clothed in human flesh. That’s right. Jesus is actually God, in human flesh, who came to this earth because mankind had been separated from Him by their sin. Jesus became a man so that He could reunite mankind with God.
We all know that we are not perfect. But did you know that one day we will all stand before a righteous God and give an account for our lives? In that moment, we will either be sentenced to Heaven or Hell. Today, we can be sure that we are going to Heaven because of what Jesus Christ did for us.
Jesus Christ paid the penalty for our sins by dying on the cross. Three days later, He rose from the dead—proving that He is God (1 Corinthians 15:3-4). He now offers free access into Heaven to all who trust in Him and believe in His death, burial, and resurrection (Romans 10:13). That’s why He came and that’s why we now celebrate His birth at Christmas—because “while we were yet sinners, Christ died for us” (Romans 5:8).
Christmas is all about Jesus Christ. He came to this earth, was born, lived, and died in order to make a way for you to get to Heaven. - crossway.org

Fix my baby!

Our friends the Dekorne’s are still at the hospital with their baby girl. The EEG and the MRI look good. Here is the latest:
Kaiya is getting nutrition now through the NJ tube, so pray that her system will correctly process the food. They wonder if she had a little stroke, which is causing the eye problems. Please continue to pray for that left eye...Also for her breathing, that as they think about taking her off the ventilator in a few days-her body will be able to respirate properly.(this won't be too soon...but proactive prayer, right?) And of course very importantly, the fluid on her brain.

Their circumstances are different from ours but all tests have been the same and it hits too close to home for me. I tossed and turned last night thinking of them. I can feel the hospital; smell that weird hospital smell and hospital food. I know what it feels like to have tons of doctors circling around you and your baby trying to decide what to do. I know what it feels like to kiss your baby goodbye as they wheel them off to yet another test. I know what it feels like to sit and wait for each test, the EEGs, MRIs, blood work, on and on. Seeing your baby hooked up to more machines with tubes and wires than you ever imagined could be put on such a little body.

All of that boils down to two things: waiting and waiting to see if they can fix my baby.

For most of my life when someone is sick, we went to doctor or hospital. Then the doctor would prescribe some sort of treatment and we got better. Then came Brayden; we sit in countless doctor offices and hospitals. Lots of tests and tons of waiting (as I mentioned before, waiting in a hospital is like dog years, one day feels like seven).

So many times I sit there crying in my head “Fix my baby! I don’t care what we need to do, just tell us and we will do it. Just fix my baby!”

Crying out to God; “Fix my baby!”

It is such a powerless feeling, when you have to wait and see what will happen. We always have to wait for the test results to come in. I can remember each conversation with each doctor after each test. Most of them list the things wrong but we always need to wait and see what will happen as he grows. Brayden’s wait and see plan pretty much entails his entire life. Will he see? Wait and see. Will he sit up? Wait and see. Will he ever be off the feeding tube? Wait and see. Will he always have seizures? Wait and see. Will he always be on so many medications? Wait and see. I could go on but you get the point.

Can anyone fix my baby?

My heart aches for the Dekornes, I want their baby to be fixed.

“I waited patiently for the Lord, he turned to me and heard my cry.” Psalm 40:1

Prayer for a baby

Friends from Taylor Unversity, Mark and Heidi Dekorne have two little girls. The youngest, Kaiya is about two months old. A few days ago they found her unresponsive with a high fever. She was rushed to the hospital.

According to their updates:
Kaiya has been diagnosed with bacterial meningitis. She is currently receiving blood, being treated with broad spectrum antibiotics, and sedated so that she can rest peacefully.
----------------------------------------
I just left the room because they are putting in the feeding tube. This will put breast milk directly into her small intestine. (the juju-something, not bees) They will also do an MRI later today. Her eyelids are beginning to swell because of the fluid. They did an EEG this morning and the preliminary results don't seem to show seizure activity...not really sure what that means as far as the pupil, but glad she's not having seizures. Her temperature is low right now, and not coming up too quickly despite extra blankets. Hopefully that will rectify itself soon. I am absolutely floored by all the prayers from so many of you I don't even know. Thank you doesn't seem to encompass my gratefulness. It means more than you know to hear from people all over the country (And Asia :)) praying for our sweet girl.
Check out the family blog: http://www.dekorne.blogspot.com/

Stay at Home Mom?

We have decided that we need help.

Since having Carter, I have been a stay at home mom. I have enjoyed it. I chose to be a stay at home mom. I know that Jeremy would have supported me if I wanted to go back to work but I loved to be home.

Having two kids, I could handle it and still loved being a stay at home mom.

Then I had Brayden, the third.

I thought I could handle his crazy schedule and still keep up with Carter and Luke's schedule.

I cannot handle it.

We decided that we need help.

Since school started, we are juggling appointments, therapies, school, school activities, etc. I cannot juggle anymore, too many balls are being dropped.

Thus we started a full search for help. One person, full time for Brayden and one person part time for Carter and Luke. Sounds great but I have a big mental hurdle. I never thought I would be one of those people with a nanny. I am a stay at home mom because I want to be a stay at home mom. The idea of having someone in my house...it is just not what I expected to happen when raising my boys.

Having a nanny is a bit scary. Carter and Luke can tell us about the person: what they did or did not do, activities, and more. Brayden cannot do that. He has seizures, meds, feeding tube... Will they know how to handle it? I have rarely left him with family let alone someone else.

We can list all of the qualifications that would be good but how do I find that person that will love and care for them, far beyond feeding and dressing them.

I pray that we will find the right people, a good fit for our family. I know that it will be great to have a nanny because we need help.

Not sleeping

This is not really about Brayden's sleeping habits. He has always been a good sleeper. A good night sleep makes everything easier for us to handle. This is about the most common comment we get about Brayden...

With a smile,"Ahh, he is sleeping."

I heard a version of this three times today from three different moms in the same building.

My middle child, Luke, goes to preschool Tues - Thurs. Brayden and I drop Luke off and pick him up each time. Luke climbs out of the car carrying his backpack. I carry Brayden. Getting out his KidKart and assembling it, is too much effort just to run into preschool so I carry him.

Brayden is not the easiest child to carry. He offers no help, in fact some days he provides resistance. He cannot hold his body or his head so I attempt to cradle him in both my arms. He is 19 months old and growing thus he is a heavy awkward load. A load I love to carry but still awkward.

I have been carrying him in and out of preschool this year and last. I see the same moms every day of preschool.

This morning I am walking into the school, Brayden breaks into a seizure. His seizures lately have a new look. Jeremy calls it the iron cross (think arms and legs fully extended and stiff). I kneel to the ground and stay still until his seizure passes. Standing over me a mom says "Everytime I see him, he is sleeping!" My reply, "I wish he was sleeping but not today." I looked down at Brayden, his eyes are wide open, clearly not asleep.

We walk to Luke's class, another mom with the same comment. I just smile.

Then come time to pick up Luke. The halls outside the classroom are full with excited mommies and children, loading up their backpacks and saying goodbyes. I am holding Brayden while talking with another mom. Again, another comment. "Wow, he sure sleeps a lot!" Again, his eyes are wide open and not asleep. I had no comment.

I do not find it hurtful, in anyway, for someone to say that. But at some point I feel like they are fishing for an answer. Brayden is clearly not sleeping. He is clearly a toddler that is not sitting on his mommy's hip or running beside.

I just ask that they ask. I have no problem answering.

He is not sleeping.

For now I "just smile and wave." - penguin from Madagascar movie (thanks Cara).

Little change, Huge change

Brayden has been on the new formula, Elecare, for two weeks. In those two weeks we have seen a huge decrease in the vomiting. In fact, it has only happened a couple of times. That is huge in comparison to the vomiting several times a day that was happening.

I must admit that I was a bit sceptical about the Elecare and a slight change in medication. After the countless tests and doctors with no answers, would a little change in formula and meds really make a difference? It sure did.

We are thrilled that the vomiting has almost gone away (also thrilled not to be doing laundry and baths every minute of the day).

Although, Brayden seems to be in pain.

Pain from what we do not know. Many times this past week he has been screaming in pain. He is not really a crier so we are not sure the best way to comfort him. A few nights he just cried himself to sleep.

It could be the new formula/meds or teething. Since he does not do anything orally, teething can be a bit of a pain. It takes longer for the teeth to come through. It looks as though he has 4-5 teeth trying to make an appearance. We are hoping that his discomfort is just the pains of teething.

If only he could tell us...

Not so generic anymore

This time of year, many people sit around a table full of food and share things that they are thankful for, Thanksgiving. I would have to admit that in years past my list of things I am thankful for, has been pretty generic; a list of things that many people probably have said or heard. “I am thankful for my faith, family, good health…”

This year is officially different for me. I have come to appreciate and be thankful for many new things, small things and even some hard things. Beyond my generic list of being thankful for my faith, family, good health (sort of)… here is my not so complete, not in any particular order, list for this year:

I am so deeply thankful for Jeremy. His love and love for our boys. This year has been hard, he and I have done our best to get through it and rise to the challenges.

I am thankful for my boys. I could blog about them for days.

I am thankful for amazing friends. We have new friendships, built up old ones and come to rely on so many. Jeremy has amazing college friends that pray for us and call on a regular basis. I have some amazing moms that I talk with regularly about anything from serious medical issues with Brayden to the serious discussion about the Hills (don’t even ask).

I am thankful for the countless people that have lifted up our family in prayer. People that we may or may not have actually meet. I am thankful for each email, comment and phone call. So many have helped us with information, guidance and support in ways that I never imagined I would need but did/do.

I am thankful for Waterford, yes Waterford. A long time ago, God knew that we would be here, a sweet little community that is nestled in Loudoun County.
This community has a top elementary school where Carter started Kindergarten and loves it.
We have wonderful neighbors that have become wonderful friends, friends that help us more than we could ever repay them.
Waterford has beautiful sunsets and open spaces that we enjoy everyday.

I am thankful for the countless doctors and nurses that continue to help our family. Doctors that we trust and trust us. Brayden has some amazing doctors that not only treat him but make Carter and Luke comfortable (the sticker drawer has been raided many times).

I am thankful for the hard times this year has brought upon our family. My relationship with Jeremy has been strengthened. We have learned not to take a “normal” day for granted. We love our boys more and more. We have learned God’s complex design for the human body and come to appreciate the idea of good health on an entirely new level.

I am thankful for a smile. I treasure a smile.
Smile from my children. Carter’s sweet smile. Luke’s adventurous smile. Brayden’s rare and precious smile. We do not take a smile for granted in this house.
Smile from friends and strangers. Smiles of love, understanding and support.

What things have been added to your thankful list?

Here is a smile passed your way, wishing you a very Happy Thanksgiving.

Toddler Tantrums

Brayden is not talking, “normal” talking is not in his near future. However, he has sounds that are all his own. The past few weeks he had become louder, making sure that he is heard. He wants someone to talk with him, he demands attention.

I started to notice that his cries are becoming more distinctive. He has never been much of a crier. I guess he has enough big things like needles, tests, doctors, nurses, etc. to cry about so everything else seems manageable. This past week he has been crying more. Tuesday night he screamed for 2 ½ hours. Any parent knows that non-stop screaming from your child is the hardest thing to hear. It is drains you like nothing else. This night Brayden was miserable. It seemed as though he was in pain and it was unbearable. We did not know how to comfort him or take care of whatever was bothering him. We had no idea what to do having tried a little bit of everything, including more medication. Jeremy and I took turns rocking him. He eventually cried himself to sleep (we almost did the same thing).

The next day he was in a pretty good mood and even did great with his OT on a therapy ball. Then came the evening, he started to cry. Jeremy swooped him up and settled into our big comfy chair by the fire. It came time for bed and Jeremy gently placed him into his crib. Brayden started to cry. We left the room hoping that he would calm down. He did not. I went back into his room and picked him up, he stopped crying. A few minutes later I put him back into his crib, he started to cry again. I listened to him. I realized this cry was different. He was not in pain like he was the night before. He wanted to be held and he was having a temper tantrum that he was not getting his way. The crying lasted for only a few minutes when he realized that he was in the crib to stay. I peeked at him to make sure he was okay and he was just laying there, awake, no problem.

Last night the crying started again. He screamed in the car for 40 minutes while I drove the boys to their grandparents house for dinner. Jeremy was meeting us there so I called him to let him know that Brayden and I were dropping off Carter and Luke then heading home. Brayden cried/screamed on and off for the next few hours. Having no idea how to console him, I wrapped in him in a blanket, sat in a dark room and held him tight. He cried himself to sleep again.

I actually wish he would just have a toddler tantrum.

As I type this he is screaming/crying again.

Can I have a tantrum?

Babies R Us and Rainbows

I realize the title of this blog may seem a bit strange but those two things were markers of my day.

First let me go back a bit….
The first time Jeremy and I entered Babies R Us was shortly after discovering we were pregnant with Carter (our oldest). We walked in and our jaws dropped. A store packed with anything and everything a baby could need and they convinced you that your baby needed every bit of it. I loved that store, registering for things, picking out exactly what I wanted, oh, I mean what the baby needed.

Brayden, being our third boy, I rarely venture into that megastore. To be honest, my experience there with Brayden leaves me with a heavy heart.

Shortly after Brayden was diagnosed (more or less, in many, many terms); we left a doctor’s appointment and had a few minutes to spare. I pulled into the parking lot of Babies R Us. I sat in the car for what seemed like hours, really was only several minutes, and watched moms hurry in and out of the store. I was angry and envious, here I was with my new baby dealing with gigantic medical concerns and they were fussing about which diaper was best for their precious one’s bottom. I really wanted to roll down the window and yell “If you only knew!” Instead, I sat in the car and cried.

Since that day I have been to Babies R Us only a few times.

Today, I went.

I pulled into the front handicap parking space, pulled out Brayden’s KidKart and feeding pump, hooked him up and headed in. I was there to look for a new pac-n-play since Brayden had done some irreparable damage to the previous one from a large vomit incident. Just walking in the door, one couple stared, stared hard but not making eye contact with me. Now I am used to people looking a bit but walking into the baby world people are curious not just about Brayden but everyone around them. What stroller do they have? What cute shoes! Why did they pick that bath tub? Where did they find that? So on and so on.

I proceeded towards the the pac-n-play displays. I walked past tons of baby items that Brayden could never use (but for the most part I am emotionally past that). Then a lady ran into Brayden’s KidKart with her shopping cart. She said “Sorry.” Then glanced down at Brayden’s contraption and looked back up at me. “Oh, Oh, I am so sorry,” seemingly extra apologetic for not just running to my child but a handicap child. No harm no foul. We went on. Then another pregnant momma passed by looking down at Brayden with such a look of concern I wondered if she might say something, then glanced at me with a pitiful smile.

I did not find a pac-n-play with a price I was hoping for so I headed towards the clearance section, my favorite place in any store. A sweet woman bent down, smiled, waved and waved at Brayden. He had no response. I did not have the energy to tell her that he could not see her. I appreciated her effort but no dice. I went on to the clothing section to look for buttoned one piece pajamas. Brayden needs the buttons so we can use his feeding tube through the night. But I found no pajamas.

At one point, I felt like the store was spinning, kind of like the storm in the Wizard of Oz, with mommies and daddies all around holding their healthy, developmentally on track babies. And I was standing in the middle with my nineteen month old who is developmentally close to a 3 month old and in his wheelchair. I was in the middle of the swirling storm.

I bought Brayden a little toy that giggled thinking he might giggle with it in one way or another and we left.

One more store and then I headed home. I could see up ahead a gigantic storm but the air was completely still. I had to go right toward the storm to get home. I drove a few miles and was then hammered with rain. Rain so hard you could barely hear a thing or see the car in front of you. It stopped raining a few minutes before I arrived home (it is a long trek from Waterford to the nearest Babies R Us).

I was standing in the kitchen asking Carter how his day was and I looked out the window towards our barn. There it was; a big beautiful rainbow. Carter and I ran out to the deck to marvel at the colors in the sky. I grabbed by camera. The picture does not do it justice.

I just stood there and thought: A beautiful rainbow as a result of a storm. There is a rainbow in this storm, my storm.

I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth. Gen 9:13 NIV

Crossing things off the List

Brayden was back at the GI doctor today. He still vomits 2-3x a day, mostly saliva and stomach bile. Several times it has been bloody but no blood since last week. We have definitely crossed many things off the list that could explain and help the vomiting problems.

Just to recap:

• Allergies – tested many times, allergic to nothing
• Reflux – has reflux but none of the medications seem to be helping much
• Seizures – sometimes seizures will induce vomit but for the most part seizures are controlled and the vomiting is not
• Stomach problem – it was found that he has delayed gastric emptying which was resolved by going from G-tube feedings to J-tube feedings also added medication to help his stomach digest the saliva and bile
• Stomach irritation – he has been scoped, looking for possible ulcers, sores, etc but nothing has been found.
• Hormonal imbalance – had an ECTH test to look at his pituitary and adrenal glands and the test came back fine
• ENT – looked for a possible irritation or problem that may have caused the bloody vomit. He was scoped and everything looked great, smooth and looking good.
• Medications – always adjusting and increasing. Also tried Zofran which should take away the urge to vomit but it has not done much good.

Now we are trying:

• New formula – was on Peptamen Jr. and will be trying Elecare (which is crazy expensive, approx $500 a month, we are hoping that between insurance and his new Medicaid, it will be covered)
• Adjusting the meds again – increasing a bit
• Haircut – ok, not really but I had to slide that in there some how. Haircuts are just as traumatic as some of his procedures. Jeremy gave him a haircut last night. I never like haircuts on any of my boys but Brayden needed it. When it gets too long he gets a bird’s nest in the back from always being on the back. Thank goodness he is not Samson and he still has his strength. It certainly accentuates his yummy cheeks.

We are praying that the new formula and a slight change in the medications will help. Brayden will be trying this out over the next few weeks. Since we have crossed many things off the list, Brayden could possibly be getting another GI scope and exploring the idea of a nissen. The nissen is:
the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily. This allows the esophagus to heal. – webmd Click here for a full description. The nissen requires some hospital time and down the roads has complications. The nissen is not something happening now, the doctor gave it as a possibility.

All of this just could be a neurological problem. Brayden's brain is abnormal in so many ways, the doctors do not know how things play out for him. We may just be waiting for him to out grow the vomiting, waiting to see if his brain can take care of it.

Does anyone, anyone at all, see something that needs to be added to the list? We are always looking for suggestions.

Tough

Brayden is tough. His little life is tough. Watching him go through all of this is tough.

After another scope, this time by an ENT doctor, we still do not have answers. We were hoping the scope would possibly show where the bleeding was coming from. It is great that the vomiting has not done damage to the throat area but we are still left with no answers. Maybe this time around the GI doctor will have some.

We came home from the hospital and I sat down to email an update but I found an email from my brother-in-law (I hope he does not mind me sharing).

We read this devotional this morning and I immediately thought of your situation with Brayden and how it relates to this devotional. We have experienced this same type of thing while waiting for an answer with Anna’s health problems...It is hard to NOT focus on WHAT we are waiting for, but HOW we are waiting. We are praying with you that the Lord reveals an answer to you through the doctors as to why Brayden keeps vomiting. We also hope that we find an answer as to why Anna can’t get rid of her sinus infections/bronchitis when she gets it. I know I personally find myself focused on the answer more than what he is trying to teach us while we wait.

It was a devotional from Our Daily Bread, that happened to be for that day. Click here to read.

A tough day and I needed some guidance, a little pick me up.

I read the email and the devotional. It applies to exactly where I am and it is tough. So, I read the devotional a few times, sat back and thought.

My reply to his email and the devotional:

Thank you for passing this on...

Waiting is hard. Suffering is hard. Waiting while your child is suffering is even harder. Patiently waiting feels impossible some days. Patience is not really a word I would use to describe myself (or Jeremy). It is difficult to be still and patient when you feel like your world is constantly moving, ever changing and throwing you curve balls.

I just assume that the Lord will take care of things. My problem is assuming the timing and/or the outcome, then I get impatient. I tend to put my nose down and plow through things, glancing up to the Lord. Then realize I need to look to him constantly not just glance once in awhile or look toward out of frustration/desperation.

As my (friend) says; take in the journey not just focus on the destination. Although I feel like our journey is filled with speed bumps, flat tires, broken engines...

Still just waiting and trying to wait patiently, not with my own strength but His.
Thank you for sharing,
Carrie

Brayden is tough. I am getting tougher just by waiting and learning to wait patiently.

Mother at the Swings

We went to the Clemyhontri Park in McLean, VA. again. If you remember, our last experience there was interesting (click here for the story and here for pictures). This time Brayden made it to the swings. This swing is one of many swings there for handicap children. It seemed to offer him just the right amount of support. He seemed to really like it and he even fussed at me when I put him back into his KidKart.

Uploading this picture, I remembered an article that I stumbled upon. I appreciate this women's feelings and conversations that she was willing to have. Conversations that I dodge because I do not know how to answer some questions.

The Mother at the Swings
by Vicki Forman

It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?"

Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.
I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.
"He really loves to go high," the mother at the swings says. "He's not afraid at all."
"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."
"Well, he must have other ways of knowing," she says. "Because he definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open." I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.
When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.

I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.
The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?
She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.
~
It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.

Chicken Little

Last night we went trick or treating. Carter and Luke were Batman and Robin. When we went costume shopping they picked out a chicken costume for Brayden. Not sure why but they thought he would like it. When it came time to get ready last night, I just couldn’t torture Brayden with a costume. He had a rough day and I (with Jeremy’s persuasion) just put a sweater on him, no costume.

I was putting the chicken costume away and I started thinking…

I feel like Chicken Little.

Who is Chicken Little you ask? This comes from an old fable about a chicken that believes the sky is falling. She was sitting under a tree and an acorn fell on her head. Convinced that the sky is falling, she runs around telling everyone and tries to prepare for disaster.

The past two weeks have been rough. Brayden’s vomiting has not gotten any better, in fact it seems worse. Last Friday night he vomited blood (not the first time this has happened). The blood was fresh. I panicked, thus one of my Chicken Little moments. Jeremy was out with Carter and Luke in DC. I was home alone with Brayden. It was about 8:00 p.m. or so. Who do I call? Any random on-call doctor will immediately send us to the ER and I could do most of what they do in the ER, right here at home. Brayden’s GI doctor is out of the country so I called our pediatrician. I did not call the office or the on-call phone number. I called her personal cell phone. Who does that? Anyway, she answered, recognizing my number. She talked me through a game plan for feeding and medicines and of course, “If he vomits blood again, take him to the ER.” I sat with Brayden, held him while he slept and once in his crib, checked him every half hour. I was ready for the sky to fall and head to the ER. He did not vomit blood again…at least for one week.

Which leads us up to yesterday morning.
I check on Brayden first thing in the morning. Every morning he vomits, so my day starts with his bath. Yesterday he did not vomit. I let him sleep because of his long day at GU hospital the day before. About an hour later, I checked on him. I could smell the vomit before I could see it. I walked over to the crib…

The sky had fallen. Brayden vomited blood. Appropriately, it was Halloween morning and I had my own bloody horror. When he has vomited blood in the past it is about 1-2 tablespoons. A couple of times the bloody vomit put him in the hospital. This time, the spot on his bed was the size of a large dinner plate; it was big and he was covered in it. The amount of blood made me freak out. I could barely figure out what to do. I called the pediatrican. Same as before, “If he vomits blood again, take him to the ER.” I wait, he does not vomit blood. He still vomits but thankfully no blood.

Meanwhile the pediatrician makes some calls to several ENT (ear, nose, throat) doctors to help figure out where the blood is coming from. Brayden’s GI track has been scoped and nothing is ever seen. Now the thought is that the vomiting and some extreme crying caused some damage up in his throat area. This is what happens to his skin on the outside, can you imagine what happens on the inside? His vomit landed on his crib bumper and sheets. His face was up against the bumper and he rubbed his face in the vomit causing the burns.

For now we are waiting to see an ENT doctor, hoping in the meantime the sky does not fall.

There are many times I feel like Chicken Little. I do not know when and what is happening, when to panic, or when the sky is actually falling. Thankfully Brayden’s pediatrician answers all of my calls (even on a Friday night) and helps me through those Chicken Little moments.

Go for the jugular?!

Back at Georgetown University Hospital for the second try.

Brayden finally had his ACTH test today (click here for description ACTH). It required lots of blood work and an IV line. It was successful and painful. They sent us to the PICU (Pediatric Intensive Care Unit) for the nurse to get a line. She looked him over, said she would not even try a couple of places because he had already been poked too much in those areas.

First poke, nothing.

Second poke, she hit an artery. Blood gushing, a bit of panic but quickly got several tubes filled with blood for the loads of blood work needed. Because this was an artery, they can not do an IV. They had to go for another vein.
The nurse said that she was going to give it one more try and if she did not get it they could book the OR to set up a line in the jugular. Brayden had a line once in his jugular and it is not pretty.

Going in for the third poke…Ok, fingers crossed, toes crossed, lots of prayers, deep breath and she got a vein. A little wiggle and lots of tape, Brayden finally had a IV.
He was given the ACTH and we waited thirty minutes for another blood draw. All they needed was 2 mls (that is a very small amount). It took 20 minutes to get those 2 mls, his blood was not coming out. Then we waited some more. We needed to wait a total of 60 minutes from the start of the ACTH. One last blood draw, 2 mls in 15 minutes.
The nurse pulled out the IV, band-aid on. Brayden was dressed and ready to go before the paper work was done.

One day we will have to tell you about the nurses but I am not up for that today.

Now we wait for the lab work. Probably will hear something the beginning of next week.

Brayden is wiped out and done with the day. He did amazing and handles it all with grace (not sure you could say the same for mommy and daddy).

On the receiving end

This weekend I received a basket of encouragement. It is put together by the mom’s group at my church, Reston Bible. The basket is filled with goodies and thoughtful notes. It is such a treat and true gift of encouragement. Before going on, I have to say thank you everyone who contributed. It is appreciated, especially after a few rough days for Brayden.

To be honest, I never thought I would be on the receiving end of an encouragement basket. I never thought of myself needing encouragement or help the way that I really do. I was actually a social work major in college. I assumed that I would be out there helping people, working with them to encourage and find ways to improve their situations.

Now here I am, with social workers in my house helping me, applying for medical and respite care, asking friends for help and receiving encouragement baskets.

Encouragement is sometimes difficult to receive. Reading through the notes that people send, it stirs up emotions. I find myself teary eyed. Being on the receiving end of someone’s thoughfulness is a wonderful feeling. Some people are so gifted with words, the perfect present and some with their hands (one gift was a hand painted clip board to help keep track of appointments and such).
So why is encouragement hard to receive?
o It is hard when you find it difficult to reciprocate. I feel like I get so busy with my life that I forget that others need encouragement as well.
o It becomes clear that encouragement is so helpful for me and makes me wonder what times I passed by the thought or opportunity to be an encouragement for someone else.
o “Encouragement is the kind of expression that helps someone want to be a better Christian, even when life is rough.” -Dr. Larry Crab. Encouragement is there to help us push on and become better. Sometimes I just don’t want to when I am tired and grouchy.

Encouragement brings on some self reflection. What am I doing right? How can I do it better? Am I really trusting the Lord the way I need to? How can I do this for someone else?

Encouragement is a special treat that is sometimes taken for granted. I want everyone to know that each thing sent our way is saved and cherished. I save each email, letter and gift; pull them out sometimes just to read and reflect. I may not have the chance to respond to each note but know that it is an encouragement. I thank you for that.

For being on the receiving end of such things, I am grateful.

Do Not Enter

Do Not Enter means
Do Not Enter. Right?

Today was our first visit to Georgetown University Hospital. We have been to Fair Oaks, Fairfax, Loudoun and Children’s for Brayden (I think I am missing one but I have no idea). Anyway back to Georgetown. As many DC metro people know, there are many roads that lead to the city. What roads you choose can make or break your drive. We have never been to GU Hospital so we reviewed several options for the best route. We decided on Canal Rd. Sounds simple…if you have never been on Canal Rd.

Here is Wikipedia’s explanation of Canal Rd.
Canal Road has reversible lanes to handle rush-hour traffic. From Foxhall Road to Arizona Avenue, Canal Road has two lanes, both of which are reversible. From Arizona Avenue to Chain Bridge, Canal Road has three lanes, of which the center lane is reversible. During morning rush hour, which runs from 6:15 a.m. to 10:00 a.m., the reversible lanes change to the southbound (towards Washington) direction. During evening rush hour, which runs from 2:45 p.m. to 7:15 p.m., the reversible lanes change to the northbound direction. At all other times, the center lane of the three lane portion is used as two left turn lanes, one to turn onto Arizona Avenue and the other to turn onto the Chain Bridge.

Did you get that? Canal Rd is complex, we were ready for it. We knew what to expect on Canal Rd. Lots of Do Not Enter signs that you ignore because of the time of day. Double yellow lines that you can actually cross. And then more Do not Enter signs with several signs on top and bottom as to when the Do Not Enter applies. We knew this but we did not know about the side streets. We were not prepared when we came to the streets we needed to turn on. They had Do Not Enter signs but signs on top and bottom as to what time it applies. You cannot read the signs fast enough, in rush hour traffic, to know if you can turn. Well, we missed a few turns but finally made our way to the hospital. A bit stressed from all of the Do Not Enter but we were there.

Brayden met with the pediatric endocrinologist. Then he was set to do an ACTH test. This required him to be hooked up to an IV, receive the ACTH and draw blood work three times during the test. Sounds simple…if you have never tried to stick Brayden.

Brayden is a difficult stick. He has had countless blood tests and IVs. Only two times have people got him on the first stick. It usually takes three. We know this and always push for an expert to come in (head nurse, anesthesiologist, resident). This time they sent a team from the NICU. Everyone uses some sort of light to help see his veins. They came with a light. The light helped them find a vein…poke and the vein was gone. The NICU nurses were patient and would let him rest for a moment then look again, look some more…poke and the vein was gone. This went on for over an hour. Jeremy was holding onto Brayden trying desperately to comfort him and hold him steady for each stick. Finally the NICU team said that they could not try anymore and call a resident or a PICU team.

The nurses also said that we could stop and come back another day. We said stop. The pediatric endocrinologist came in about this time and was suggesting ways that we could have it done today. That moment Brayden vomited his awful vomit. He said stop.

After being there for almost three hours it was decided Brayden will be going back next week to try again. He will be placed in the PICU for the test and can be hydrated before the test to help.

Brayden should have come with a Do Not Enter sign today. Those needles found no place to enter no matter what route was taken. It would be nice if he came with signs and times that worked for him and the best possible route to take. The only clear sign we got from him today was DO NOT ENTER!

Scared

I figured this would be an appropriate blog for this time of year…Halloween. I actually enjoy being scared, well kind of. I watch scary movies but I prefer them to be on TV so I can turn the channel. I like the haunted houses, campfire stories and a good scary book that I can close when I want or flip ahead to check things out. I can feel my heart beating a little faster when I get scared.

The past week, I have been experiencing a new kind of scare. I am scared for Brayden. Since he was born, I have never really been scared. I have been concerned, anxious or worried but never really scared. All of those feelings pass, sometimes in just a moment. I do not feel scared everyday but lately I lay in bed with my thoughts, my heart beating faster…

I am not really sure why I have been feeling this way. It could be because we have yet to find a good answer for the vomiting. One doctor told us that we can do our best to control the vomiting but it might be something we have to live with. Live with?! I accept a lot of things about Brayden but I will not accept this, I cannot accept this. Maybe I am scared we have to.

Brayden is starting to understand things a little more each day. Some days I feel like he seems uncomfortable just being Brayden or unsure of what is happening to him or why things are a struggle. Does he have any idea that things are so hard for him? I don’t want him to know, I am scared for him to know.

I have been reading many blogs on and off the past year about families and their special needs children (sorry I was lurking, never quite knew what message to write). A couple of them have lost their children in the past few months, several have been in and out the hospital. That scares me. Our situations are very different but similar. Brayden is not in any danger but some days I just feel scared. Scared that I have no idea what lies ahead.

Last week he vomited blood a couple of times. The vomiting looks and sounds awful. I can do nothing to help him, just try to comfort him. Every morning, I hold my breath before I walk in to his room not knowing what I will find. I am scared about what I might find.

This scare is deep down, it maybe feelings about Brayden that I have not addressed yet. The past six months have been really hard and it seems as though each month brings another challenge for him.

I am his mom. I want to protect him. I am scared that I cannot.

My head tells me
Be strong and courageous…Do not be afraid or discouraged, for the Lord God, my God, is with you. He will not fail you or forsake you… 1 Chr 28:20
If only the rest of me will listen.

Something old, Something new

Old – the vomiting. It is getting old. I am tired of the vomiting. It seems to be doing more and more damage to his little body. The vomiting looks so violent and painful. The GI doctors have crossed everything off of their list; nothing new to look for, tests or medications to try.

New – cortisol. Last week Brayden had blood work done to check his cortisol. It came back abnormal. What new information does this bring? The test looks for the cortisol levels in the blood, looking for potential problems with the pituitary gland. Just above the pituitary gland is the hypothalamus. The hypothalamus sends signals to the pituitary gland. Over the summer we have started to realize that Brayden’s hypothalamus may not be functioning properly because of his difficulty regulating his body temperature and now his gastric refluxes. The idea is that Brayden’s brain is not sending the proper hormones to regulate his body, some of the results being vomiting and extreme acidity in his stomach.

Our pediatrician talked with a pediatric endocrinologist at Georgetown Hospital, one place we have not been to yet, to review this new finding about his cortisol levels. Brayden is scheduled for an evaluation and an ACTH test for this Thursday, Oct 23.

Same old problem, hopefully a new answer.

18 months...almost

Carter, Luke, Brayden and I left the house this morning a few minutes after 7:00. We headed to Brayden's pediatrician for a blood test that had to been done first thing in the morning and, while we were there, his 18 month check up. We try to make the appointments a one stop shop, no need to have two.

Here are his current stats for 18 months old (I did not pad them the way Jeremy did, oops I mean, some people do for college football):
Height – 32 ¾ inches, in the 50%, he has always been long but getting longer
Weight – 23 lbs. in the 10%, hooray! He is finally back on the growth curve; he has not been on the curve since he was 6 months old.
Head – 16.5 inches, not on the growth curve, never been on the curve but it is growing.
He is really growing! It is amazing what can happen when he is finally keeping food in and getting good nutrition through the J-tube. He just feels sturdier.

The vomiting is still an issue. He is on 4 medications (not including his seizure meds) to help but it is not eliminating the problem. The past couple of days he has vomited 2x a day. It does damage his skin with a very sensitive rash and the vomiting sometimes contains blood because of the damage it is doing to the inside. The pediatrician (who is amazing) is in communication with Brayden’s GI doctor and neurologist and is talking to a neuro-psychiatrist (who knew there was such a thing). They are discussing other options. Brayden had some blood work today for cortisol, to check his pituitary gland. We are also talking about another medication that could stop the brain from sending these strong signals to vomit, something similar to the Zofran that he is currently on.

After being there 1 ½ hours, we strolled out. Carter and Luke got a surprise flu mist, which they both handled just fine. The nurses (who are amazing too) kept them occupied in another room with stickers, highlighters and a pad of paper.


I attempted to take some pictures but after his long day he was not feeling a Kodak moment. These are the reactions I got…

He will officially be 18 months old October 17th.

Kids Say the Darnedest Things

Remember the Art Linkletter show and later hosted by Bill Cosby, “Kids Say the Darnedest Things.” The host would ask the little children big questions, trying to get their perspective on grown up type things. The children would be asked about current events, marriage, people, pop culture, and more. The children would give their insight. It was always amusing and humorous to hear their thoughts and how they process the world around them.

I have been asked several times lately how Carter and Luke handle Brayden’s circumstances. I am not always sure how much they understand or how much we should explain to them. They love him and treat him like their brother that needs special help. They know all about the feeding tubes, seizures and can recognize them, the vomiting, mommy doing laundry because of the vomiting, the KidKart, they know all the therapists by name and most doctors.

Have are a few glimpses of the way their little minds are trying to understand:

Carter (at the time was 5 years old) and his friend were in the house playing. The little boy asked Carter, “How old is your brother?” Carter said, “He is one.” The little boy replied, “My cousin is one and he can walk.” Carter casually said, “He isn’t walking ‘cause he is missing a bone inside his head.” The little boy exclaimed with excitement, as if they discovered a dinosaur bone, “Really!?” Carter said, “Yep!” And they were off the play.

Luke (our 3 year old) has always been curious about Brayden’s eating habits. Probably to detract attention from his bad eating (he prefers to make the dinner, rather than eat). When Brayden came home after getting his first feeding tube, Luke was all about it. He immediately remembered it was called a Mic-Key button because at the time he liked watching Mickey Mouse. Now that Brayden has the G-J tube, Luke remembers the J-tube because J is for Jenkins. Just last week a friend was passing us in the halls of Luke’s preschool and asked how Brayden was doing. Luke answered before I could, “Brayden has a J-tube now, not a Mickey button.” The person just smiled and nodded not sure what to make of Luke’s assessment. Luke knew more medical terms than this adult.

Carter loves Brayden and seems as thought the two of them have their own conversations. Of course Brayden is so agreeable and likes the same things Carter likes (according to Carter). Carter just calls him “my buddy.” Today in the car, "Buddy this is your favorite song, just like me."

Luke is just starting to process everything going on. Carter understands most of the circumstances. Luke says things in passing, not really to anyone in particular. Last week, he passed Brayden and announced, “Brayden, you not walk yet but Brookie (Brooklyn, the boys’ cousin who is the same age as Brayden) can walk.”

Carter is protective of both his little brothers. When it comes to Brayden, Carter is quick to tell someone to be gentle or watch out for his feeding tube. Carter’s explanation of the feeding is interesting, especially when explained to his friends… “He has a thing that puts the stuff right into his belly. You have to be careful when he is eating.” The children look so perplexed by Carter’s explanation.

Luke’s preschool has been having Safety week, with visits from the local fire department and EMTs. We were pulling away from school and Luke declared, “Ambulances came to school today not the house this time!” We have only had to call 911 two times, both happened this summer.

The first time we call 911, Carter was listening as we discussed the plan to call for an ambulance. As we hung up the phone he came running into the room and was very upset and agitated. “Mommy, you cannot call 911 unless the house is burning. The house is not burning!”

Kids say the darnedest things.

Definition of Chaos

Chaos - A condition or place of great disorder or confusion.

I think today fit the definition of chaos.

Today is my oldest son's birthday. Carter turned 6 today and selected waffles for his birthday breakfast. I made the boys breakfast and felt like the morning was running smoothly. I walked into Brayden's room and found that he had vomited blood. The last time he did this, he ended up with all inclusive stay at the Children's Hospital for several days. Immediately, the house exploded with energy and me shouting commands, trying to get things in order.

"Carter, bring me the phone." - I called Jeremy and then called a couple of doctors, waited to hear back from them.

"Carter and Luke get dressed." - I called a friend to pick up Luke to transport him to preschool. After I hung up the phone, a neighbor called (completely unaware of what was happening). She asked if Carter could come over for the morning to play with her son, a huge answer to prayer. Both the boys were taken care of this morning.

"Boys be quiet." - The phone rang, it was the doctor. I held my breath and answered the phone. Sigh of relief; Brayden did not have to go to the hospital. He did need to see the doctor for some tests.

"Boys, grab your things. It is time to go." - Carter headed to the neighbor, Luke was picked up and Brayden was ready to head to the doctor's office.

My mind was in a state of chaos. I was trying to make sure the boys had everything they needed for the day and into the evening, just in case. I was trying to figure out what plan of action was best for Brayden. I did not know if I should give Brayden his medications, or feed him, or what to feed him. So many things to keep straight in that moment and still think ahead. I would walk into a room and forget why I was even in there.

We all left the house. Beds were not made, dirty dishes in the sink (and they are still there),...House in chaos.

I like order, chaos is not my friend.

Brayden and I finally arrived at the doctor's office. He had vomited a bit too much the past couple of days and caused some bleeding. It heals quickly and the remainder of the day he was doing fine. We are adding more medications and adjusting his feedings. After months of this, the only answer still seems to be that his vomiting issues are not a GI problem but more of a neurological issue, his basic functions including digestion are not working properly. Brayden has been tested, scoped and medicated with no real evidence to point to the root of the problem. Days of chaos may still be ahead, we pray that they will not happen but I am not holding my breath.

I would prefer our days to be the definition of order not chaos but Brayden likes to keep us on our toes.

Surrender

I have to say, I have held off writing a new blog entry because the previous post is still so special. Anyway, here we go…

This week has brought heavy conversations and new questions.
My grandfather, Grampy as we call him, has been fighting the effects of Parkinson’s disease for sometime now. The last several months have really taken a toll on his body and mind. My grandmother, Grammy, is exhausted from driving back and forth to the nursing home, making medical decisions and being there for him. She and I have shared many a similar conversations about Grampy and Brayden. They have similar types of therapies and dependence on other people. Their minds are desperately trying to communicate with their bodies but the brain is not always making the connections.

Grammy asked me this week, “What do you do when you feel so discouraged?” At first I did not know how to answer that question. I really am a the-glass-is-half-full person. After some thought, I realized that it is all about surrendering. I do not mean giving in to the disease or problems. I mean surrendering to the fact that we do not have control over the situations. It is complete and utter dependence on God. I have no control over what happened to Brayden or how his brain may develop. Of course we do all we can to give him the best possible chance. But the situation is out of our control. Jeremy and I have handed him over to the Lord. It is quite freeing and comforting knowing that there is a grand design and plan for Brayden. To be perfectly honest, I may not like the plan (hospital stays, seizures, vomiting, procedures…) but it is out of my hands. I am still trusting the plan.

We try to make the best decisions possible for Brayden and pray that we are lead to make the right decision. Just a few weeks ago we were wrestling with the idea that Brayden may need to get a J-tube. Still on the way to the hospital, I was not sure about it. I felt like I need some confirmation that it was the right decision. As we were driving to the hospital, Brayden vomited all of his food. Not something that I wanted him to do but a clear sign that he needed the J-tube.

Surrender is hard. It first glance it seems as though you are waving the white flag and giving in. The truth is surrender shows us our humanity and that we cannot do everything. Brayden’s brain abnormalities happened without explanation, even from the best doctors. Parkinson’s disease happens without explanation. We are fighting this seemingly gigantic uphill battle, pushing Brayden up the mountain. Grammy is fighting a downhill battle with Grampy that is rolling down faster and faster. Different sides of the mountain, fighting the effects of brain problems. It is not our strength that will help us, is it strength from God.

God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear…The Lord Almighty is with us. Psalm 46:1-2, 7

Back to the question, “What do I do when I am discouraged?” I surrender.


A link to the hymn "I surrender All" performed by a former Backstreet Boy for fun!

Brayden's Hand, Daddy's Face

Brayden had a rough day yesterday, a fever and too many seizures. The seizures seemed to be non-stop. We gave him a dose of Diastat (the emergency rectal seizure medication). He pooped just a few minutes after giving it. Oh great, did it do any good? We called the Children's on-call neurologist, for fear that we may be heading into the ER. Thankfully Brayden settled down and slept well last night.

Then today...
After his morning bath, he found his favorite resting place, daddy's lap. I went into the kitchen to get breakfast ready. Jeremy called me back into the room, "You have to come see this."

Brayden has been working hard to explore with his hands, trying to find his mouth or feel things around him. His left hand is used more often and becoming more useful to him. His movements are not necessarily intentional or coordinated but slowly getting better. His occupational therapist started working with him on reaching. She also suggested that we name what Brayden is doing. We say, "Getting in your chair, in your bed, washing your face..." to let him know what is happening. This can facilitate his learning and understanding, especially since his vision is extremely impaired.

The video is Jeremy asking him to do something and he responds! His hand movements are intentional. We have tried this several times today with great success! Our little one is doing big things. We wait and pray for moments like these.

My Sorority

I attended college at Taylor University. Where is it you ask? Indiana. Take a right by a farm, left by another, pass several more and soon you will find the campus. Taylor University is a small college, no fraternities or sororities. Students were grouped pretty much by their dorm, sports or activities.

I never thought that later in life I would be a part of a sorority. I do not mean a traditional sorority with Greek letters, rush and parties. I never wanted or ever thought I would be a part of this sorority. It is a group of moms; some I have met, others just by email, moms that have special needs children.

I have been surprised and blessed by connecting with these women. There is an instant bond and understanding. A few weeks ago, I sent out an email with a desperate plea for information about a J-tube and some medication. At the time, I did not know anyone that had a J-tube. That email was forwarded and forwarded some more. Soon my inbox was filled with emails from families that have dealt with similar issues. They offered us advice, questions to ask, their experiences, Bible verses and even just an email “We have been there, we feel for you and we are praying for you.” I have enjoyed reading the emails about their children and looking at pictures.

It is not just emails that have been helpful. We have several friends that we have known for years, who have special needs children; all very different circumstances but a deepened friendship as a result.

The bond is something I have come to appreciate. My questions, concerns or fears are understood. Just in discussion about the fear of sending Brayden to school. Many moms have dropped off their child or sent them on that special bus off to school. My eyes well-up with tears even thinking about it. There is some humor in sharing our experiences with the not-so kindness of strangers, doctors or crazy hospital adventures. There is comfort and safety sharing these things with moms of special needs children. No explanations, apologies or misunderstanding, they know.

I felt it shelter to speak to you. – Emily Dickinson

This is my sorority. The rush has been painful. The connections are helpful. The bonds are priceless.

Hello. How are you?

How many times a week do we say hello to people and ask "how are you?" Do we really want to know how they are doing or have the time? Do we just ask out of courtesy?

How am I? I would say, “We are doing okay. Busy morning for Brayden, got the other two off to school. They had a wonderful time at school while I was running some errands. And I am loving this weather and ready for fall.” I am pretty sure those words came out of my mouth several times today.

Inside my head I am really thinking. Today has been rough. I have cried a couple of times and been ready to cry several times. I woke to find Brayden had vomited…again. It was so acidic that it literally burned his skin, the backs of his arms from elbow to shoulder and half of his back. I tried to bathe him but the sting of soap and water caused him to scream in pain. I could not get him to calm down. I finally took him out of the bath, wrapped him in a towel, sat on the floor and held him for about 20 minutes. Meanwhile Carter and Luke are not dressed for school and we should have already left the house. Luke is upset about being late. I am on the phone with the doctor and still trying to calm Brayden. His skin was bleeding and burning. The doctor called in a prescription for burn cream (thus my errand running). I decided to just leave the house with breakfast plates on the table, Brayden dirty sheets on the bed (I am still washing them everyday because of vomiting), pajamas on the floor and probably a dirty diaper next to them. If you know me, I like to have the house clean and tidy before I leave so walking out the door with the mess was hard. We finally made it to school. I was not sure that I even brushed my teeth. That was the first two hours of my day.

How am I? Grouchy and frustrated. Aren’t you glad you asked?

Questions? Only some answers.

Is Brayden’s new G-J tube working?
Brayden is getting his feedings through the J-tube portal. The food is going directly into his small intestine; which means he is not vomiting his food anymore. We have been able to get the correct amount of calories in him. Before his new tube we were only able to get in about 400-500 calories a day. The past couple of weeks he has been getting around 900-1000 calories day.

Is Brayden still vomiting?
Yes. The vomiting is no longer his food (because it is not in his stomach). It is horrible retching of stomach bile, which looks incredibly painful and burns his skins on contact. Once he starts, it takes him some time to calm down. We do not know why this is still happening.

Could it be because of seizures?
Possibly, but one of his seizure medications has been increased. The seizures have been doing better but not the vomiting.

Could it be severe reflux?
Possibly, he is taking Prevacid and Zantac. We have no idea if these medications are doing much good.

Anyone have any good insight or thoughts about any of this? Are there other reflux medications? Could a nissin help (Brayden does not have one)? Are there any questions we should be asking?
Brayden is scheduled to see the GI doctor at Children’s on Thursday, we want to be informed as possible and find a resolution to the vomiting. If the vomiting does not decrease, the plans for Brayden to eat orally or to have things put in his stomach becomes a harder goal to reach.

How is Brayden doing?
Other than the vomiting, Brayden is doing great. Last week his occupational therapist, Ms. Pam, came for his weekly appointment. He was thrilled to see her. Brayden has been working with her since he was about 3 months old. He grinned and pulled out all of his tricks that afternoon. She brought toys that make noise and things for him to bang on. He gave it his best effort. In his somewhat random/coordinated movements, he was able to bang on a little piano. If he hit a key, he squealed with excitement. The moment Ms. Pam walked out the door, Brayden slept for the rest of the afternoon. He was wiped out.

__

Feel free to ask us questions, we do not mind answering.

PC

PC, or politically correct. How does that apply to Brayden? I was talking with a friend yesterday, whose daughter has special needs. She just went to a workshop for disability advocacy (I do not remember the official title). One of the topics was language and changing the language we use to describe disability or handicap.

To be honest, I have no idea what words to use. Sometimes we say Brayden is handicap, special needs, developmental delay, severe and multiple handicaps. It always depends on who we are talking to. I have no idea what is PC to describe my child. Frankly, I am not sure I care. I am aware that it could be an issue but for right now, I do not know what to think about it. Brayden’s conditions are not easy to describe and that random person in the store just wants a quick answer not his medical history. His medical history is barely understood by doctors.

Sometimes I need people to know that Brayden is handicap and he requires extra help. We have a child with special needs and we need special accommodations to make his world work for him.

Many words can be harmful but it seems more about the context in which they are used. “My son is handicap.” “Oh, look at that handicap!” Same word, different context.

Speaking of PC, I saw an interesting segment on TV this week. I would have never paid a bit of attention to until we had Brayden. A large shopping center here in Northern VA, is Tysons Corner; a mecca of shopping. The mall is trying to promote “green” living and created spaces for hybrid cars. Priveledged parking for those driving the “green” vehicles. Sounds like a great idea. The reason it made the news was not because of promoting “green” practices it was because of the location of these new parking spots. Several of the spots were clearly once handicap parking spaces. You can see where the painted handicap sign on the pavement was covered. Some of the spaces are closer to the handicap ramp to get up to the sidewalk and closer to the mall entrances. Interesting…I know that being “green” is great but over the handicap? Which is more PC?

I have probably offended the PC people of the world.

Talking

This morning Carter was talking with Brayden. I was in Brayden’s bathroom preparing all of his morning medications. I was listening.
Carter said, “Brayden what are you going to be when you grow up? I am going to be a zookeeper. You can be something like a zookeeper. Mommy, what do you think Brayden wants to be?”
I replied, “Well Carter, I am not sure what Brayden will be. He is probably going to spend a lot of his life with mommy and daddy. Since he cannot see very well, sit up, walk or talk. It might be hard for him to leave home.”
Carter looked at me with a face of disagreement. “Mommy, Brayden talks all of the time.”
I asked, “What do you mean?”
Carter went on to demonstrate several of Brayden’s noises, of which he can perfectly mimic. Sometimes so well that I have to ask who made the noise. “This noise is his happy noise…This one is when he wants you…He cries when he is sad and tired. Brayden knows how to talk.”

I said, “You are right buddy, he does have his own way of talking and he loves that you know that.”

Handicap on top of Handicap

Brayden is almost 17 months old. For the first twelve months of his life, I felt like we had it pretty easy with him. Brayden had no huge medical concerns. Of course he is dealing with seizures but we have come to accept them as part of his daily life and know when an adjustment in medication is needed. Since his first birthday, his handicaps seem to become greater.

As Brayden grows, his limitations and abilities become more apparent. I spoke with the neurologist for a long time last week. We have discovered that his basic function of controlling his body temperature is not working. Throughout the winter Brayden’s hands and feet would become red and extremely swollen, his body overcompensating to keep his extremities warm. Then come spring it has not happened once. Then we noticed this summer that Brayden does not sweat, not a drop of perspiration on his body.
His basic function of digestion is not functioning properly. He just had his G-tube was replaced with a G-J tube; his stomach was not digesting properly (G-tube) and needed a J-tube to go right in to his small intestine.

The decision for Brayden is get the G-J tube was some what difficult. I said to Jeremy, “How can Brayden be more handicap?” Having his food go into his small intestine instead of his stomach, that seems like a major set back. He is going to be hooked up a machine, the feeding pump, around 20 hours a day. What kind of life is that? There is some comfort in knowing that he is getting nutrition and not vomiting it all up, giving him the best growth opportunity.

It seems as though every couple of months we add another aliment to Brayden’s medical issues. As he gets older handicaps become more apparent, like his seizures. When a baby twitches no one seems to notice, when a toddler twitches it looks more dramatic. The past couple of months, he vomits after some seizures.

Each month passes and we are adding handicap on top of handicap: unable to hold head, sit, talk, walk, see, eat, etc. We do not expect much from a baby so we were not aware that Brayden maybe dealing with more and more. As he is becoming a toddler, issues are coming to the surface that may have been there all along but we are just learning to recognize them. As a baby he used the same baby gear his older brothers used. Brayden grows and he needs more handicap equipment: KidKart, bath chair, feeding pump, etc. We are grateful for the equipment because it makes life easier and more comfortable for Brayden but it makes things feel more handicap.

Handicap on top of handicap and we adjust.

Tolerate

*Update Sept 11
Brayden was able to tolerate his feeds so he was discharged. He is home and doing well. This is his new hardware.
Gastric - into his stomach
Jejunal - into his small intestine
Bal - checks the water balloon that helps hold it in from the inside
He will be on 20-22 hour continous feed.

Anyone that has experience, advice or comments about this please pass along. We have only come across a couple people whose child has had one. Post in the comments or email, thanks for your help
______________

Brayden had his G-tube removed and received a G-J tube. The hospital stay has been/will be about 6 days. Starting with IV fluids, scope to see his digestive system, placement of the J-tube and some feedings to make sure he can tolerate the feedings going into his small intestine.
I cannot even begin to describe G-J tube. It is much bigger than the mickey button he had for the G-tube. We have requested a full tutorial on the new tube. We want to know all about it.
Brayden is doing amazingly well and tolerating everything with flying colors. I mean that he is tolerating the hospital experience, the constant vital checks, nurses & doctors poking at him, not eating for a few days, sleeping in the hospital crib, noises of having a roomate, etc. He is tolerating it all, even making his happy noices and smiles this morning, despite what his body has gone through.
The next couple of days he will be watched to determine if he can tolerate the feeds.

A visit

Jeremy brought Carter and Luke to the hospital this evening. It was the first time they have been at the hospital with Brayden. Carter and Luke sometimes attend Brayden's doctor visits, they are home when the therapists come to work with Brayden but they have not been a part of Brayden's hospital adventures. You wonder what they will think of it all. Of course, they were completely fine. Carter and his little enquiring mind asked what each machine did and how it helped Brayden. Carter immediately stood up on the chair next to Brayden's bed and gently patted him, saying "Hi Buddy." Luke asked to be picked up and give Brayden a kiss, of which Brayden does not always enjoy but did not mind this time. The boys talked to Brayden, sang some songs, dined in the cafeteria, watched a little TV and did it in 15 minutes.

They miss him and want him to come home. Driving back to the house tonight, Luke sat in the back and whined every couple of minutes (it took us 75 minutes to get home), "I want Daddy and Brayden home." All I could say was, "Me too."

Bad Brain

The list of Brayden’s aliments and medications is long. I have all of them memorized. I regurgitate the information a couple times a week to doctors, insurance companies, on medical forms, etc. In emergency I have to pass on the information to the EMTs, ER nurses and doctors, admitting physicians, floor nurses, head nurses, medical students, on call doctors, residents, attending physician…the list goes on and on.

After our last hospital stay, I created a card that contained Brayden’s information. All of it is there, spelled correctly, proper diagnoses, medicines and doses written, ready for anyone to read. Then I could concentrate on Brayden, comforting him. It looks something like this:
On Sunday, we were in the ER at Children’s and in the process of being admitted. We handed the card to the doctors who were seemingly impressed that we had everything right there ready for them to read. We waited and waited in the ER for Brayden to be transferred to his room. The admitting physician came in to get Brayden’s medical history. He asked a few simple questions about Brayden’s development, I did not hand him the card. Then he asked the big question; “What is his diagnosis?” I never really know how to answer that question. Brayden has so many things and no real label that would describe him. I pulled out the information card I created. The doctor started reviewing it, asking a few questions about his medications. Then he reached the part listing the brain abnormalities. He read each word. Then tried to make a joke and said, “I used to work with a doctor that said this and I am going to say it now. BAD BRAIN. He has a bad brain.” He chuckled. Jeremy and I were a bit shell shocked that he said it. We know that Brayden has a bad brain but have never had someone say it with such little tact.

Bad brain but a good baby. Bad brain but a loved baby. Bad brain but my baby.