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...