Sisters

It is amazing what your children can teach you.  Natalie is the only one in Cara’s life that sees only Cara.  She doesn’t look at her with a sad heart and tearful eyes.  She doesn’t think about the future when she looks at Cara’s face. She doesn’t see the things she can’t do.  Natalie looks at Cara and just sees her sister.

Today Natalie, Cara and myself were sitting on the couch watching television.  Cara was sitting between Natalie and I leaning against me.  I looked down and noticed that Natalie was holding Cara’s hand.  Then she roughly nuzzled her sister’s cheek with her own and kissed her. I smiled.

Natalie cuddles Cara a little too rough, smashes her face into Cara’s when she kisses her, gets her hair in her face when she hugs her, holds Cara’s little hand tight and doesn’t let go, tries to force Cara to play with toys and makes a lot of noise when Cara wants to sleep.  She is not careful and quiet. She treats Cara perfectly. In the moments where Natalie is interacting with her baby sister, Cara is just Cara.  It is two normal sisters playing. In those moments Cara’s brain is totally healed, there is no possible disease, no developmental delay, no future of tests and results, no future disability, there is just Natalie and Cara, just sisters. It is so beautiful and there is no better therapy for Cara. It warms my heart so deeply. Only Natalie can have these moments with Cara and I feel blessed and privileged every time I witness it. In those moments I see a normal happy baby playing with her big sister. I can’t even describe what that feels like and only another parent with a special needs child could understand. A very close family friend shared with me how a psychologist described what parents with special needs children go through.  It is grieving. You grieve your normal child. The big difference is that when you grieve the lost of a loved one you come to peace with the fact that they are gone and you move on.  There is no “moving on” with a disabled or chronically ill child. Something can happen that triggers the grieving process to start again from the beginning.  There is something they can’t do, you see other parents with normal babies, someone says the wrong thing etc…and you find yourself back at the beginning feeling denial, sadness and anger.  The best way to describe how it feels for me to see moments of Cara as a normal baby is for someone to get a few minutes with a loved one after they have passed away. When the minutes are gone the ache sweeps back in and the pain is greater but those minutes make any amount of pain worth it.  Don’t get me wrong, I love my daughter exactly the way she is and it is because I love her that the pain, anger and longing for her to live something as simple as a normal life is so great.  Natalie only has moments with her normal baby sister, she doesn’t see her as anything else.  I wish it could stay that way.

Here is a quick update:

We are still waiting to get an appointment with the neurometabolic team at OHSU.  In the back of our minds is the possibility of taking Cara to Seattle Children’s Hospital.  I no longer feel the need for patience. Patience is only a virtue when it does not involve the lives of your children. Hopefully we will hear something in the next couple days.

Thank you

Sometimes I sit and feel like I am at the bottom of a deep dark well. Struggling to find a way out. When I look around though I realize that I am higher than I have ever been.  Even through this difficult time I find myself in the clouds lifted on the shoulders of everyone that loves us.

I have been so touched by the love, support, prayers and thoughts that has blanketed us. I have heard from many that they don’t know what to say, feel helpless, wish they could do more… I want to let you all know that we can feel the support and love from all of you.  It is powerful and has been the glue to keep the pieces together and the fuel to keep us going. All the positive energy has been the greatest help that we have received.

Despite the worry and fear, there are still more laughs and smiles than tears. Cara brings us so much joy. Every time she looks up and smiles it reminds us how lucky we are to have her.  She is beautiful, perfect and a true blessing to our family.

Thank you, thank you, thank you!

How did we get here?

Disabled. Challenged. Special. All words that we have started to accept and feel comfortable with.  We can do this.  We can help Cara overcome any physical and mental obstacle.  We can help her find a new way of accomplishing anything.  If she wanted to climb a mountain we would carry her and she’d do it.

My bedroom swings open shaking me out of a nap. “Call Dan.  It’s an emergency!” My mom shuts the door and runs back downstairs where she was playing with Natalie. I grab my cell phone and call Dan at work.  Just the sound of his voice make my limbs go numb.  He starts to explain that the doctor was able to open the video clip we took of Cara doing some strange startling movements. Okay. She thinks that they are infantile spasms. Okay. Infantile spasms are a type of seizure. Okay. This new development combined with a “vastly abnormal” (cringe) brain has elevated her concern of a possible energy issue. What? She has called Doerenbecher Childrens Hospital at OHSU to try to get Cara a bed. What? For tonight.  Wait, wait, how did we get to “have to go to the hospital tonight”? The numbness creeps into my head. I jump in the shower then start to pack a bag for the three of us. Not exactly an emergency but pain and fear tighten their grip nonetheless.

We arrive at OHSU in the early evening. Cara has a room ready.  She will get an EEG in the morning. They need to test urine, blood, and spinal fluid (cringe).  Urine was easy, just a couple cotton balls in the diaper.  Blood was more difficult.  Three pokes later and what felt like hours of screaming, they got the blood that they needed. Her eyes red from tears, hand and arm bruised from needles, we settled in for the night. The next morning Cara gets her EEG.  Looking at our sleeping daughter with what looks like a hundred wires coming from her head, Dan and I look at each other. How did we get here?

A lumbar puncture is no big deal.  Cara won’t even need to be sedated. No big deal?? Are you kidding me??? Even medicated I have never seen Cara so upset.  The nurse and Dan worked on holding her down while I focused on dipping the pacifier in sugar water and talking to her. Her entire body was red and she screamed with such vigor that only a high pitch rasp came from her throat. She is 6 months old, 14lbs and it took two people to hold her in place. The procedure is harder on the parents than on the baby.  I doubt Cara would agree.

We were told that Cara’s EEG showed that she was not having infantile spasms.  I took my first breath in two days. We could go home. Go home without steroid injections we would have to give Cara ourselves. We went home with a small smile and celebrated a small victory.

Cara’s EEG was not entirely normal.  She is having seizure activity that is being diagnosed as myoclonic seizures.  She is on a very low dose of an anticonvulsant medication.  At least it’s not steroids. At least it’s not injections.

“Hello Mrs. Williams. Is this a good time? Do you have a few minutes to talk.” A week after our stay at the hospital Cara’s lab results were in.  My palms start to sweat. “I now have a bigger concern that Cara has a metabolic issue going on.” “Metabolic and mitochondrial disorders often times present themselves as an HIE.” Cara has been referred to the neurometabolic team at OHSU. It could be months before we get a diagnosis.

I call Dan after speaking to Cara’s neurologist and relay the information the best I can.  “How are you able to tell me this keeping it together?”  I have no other choice. Losing it helps no one.  Losing it means I can’t be a good mom to my daughters.  Losing it means I am giving up.

That evening we stand in our kitchen and just look at each other and shake our heads.  How did we get here?

Here we are again.  We thought we knew what was wrong and we were ready to move forward.  We were comfortable with disabled.  Comfortable with “special needs”. Comfortable with a static brain injury. Now we wait for more specialists, more tests and more results. There are hundreds of different types of metabolic disorders. Some with simple treatments. Some fatal. Many debilitating. All have no cure. The numbness flows into my chest.

In a very dark corner of my mind the images of my daughter dying keep trying to float to the forefront.  Sometimes they make it.  Most of the time I force them back into their corner.  They won’t go away but I can’t acknowledge their existance.  I can’t accept the possibility of losing my daughter, a part of my family, a part of myself. I can not lose my daughter.

How did we get here?

February 3, 2011

“The doctor would like you to come in tomorrow to go over the results.” My heart hit the floor. The tears followed close behind. A wave of pain and fear wrapped around me and is here to stay.

Cara was born on Wednesday, August 25, 2010, her due date.  I was induced because it seemed like little Cara wasn’t moving as much as she should and my fluid was a bit low.  As the day progressed, Cara’s activity picked up and her heartbeat was great. Dan and I were excited and images of having two girls, sisters, growing up together and our complete family filled my mind and my heart. Natalie will love having a sister she can play with.  It was a very quick labor and delivery. Cara was born at 11:56pm.  She was pink head to toe and came out crying, weighing in at 5lbs 12ozs.  She was petite but gorgeous.  Every day the doctors and nurses checked all the necessary boxes and Friday morning we were given the green light to go home.

Cara had problems feeding and we were instructed to supplement each feeding with a bottle.  “It’s just because she is small.” Soon, Cara was drinking exclusively from a bottle.  She would still take an hour to finish just a few ounces.  “It’s just because she is small.” We began to notice that Cara wasn’t meeting her milestones when her sister did. “It’s just because she started out almost 2lbs behind.” “Every baby develops at their own speed.” Three months, still not able to hold her head up. “It’s just because she started out almost 2lbs behind.” “Every baby develops at their own speed.” Four months, still can’t hold her head up, not smiling, and not bringing her hands to her mouth. “Every baby develops at their own speed.” “More tummy time.” At Cara’s four month well check appointment the pediatrician looked at Cara with a furrowed brow. “I would like for Cara to see a neurologist as soon as possible.  I am also going to refer her to the neurodevelopmental center and an opthamologist.”  The look on the doctors face as she examined Cara is etched permanently in my mind. “Every baby develops at their own speed?” “More tummy time?”Before I left the pediatrician’s office I had an appointment with a pediatric neurologist for the very next day.

The neurologist examined Cara.  Again, the same look. “I am going to order an MRI of Cara’s brain”.

January 31st, 2011.  Cara and I arrive at the hospital at 6am for her MRI. Dan joins us, after dropping Natalie off with a neighbor, just in time to chat with the anesthesiologist. We leave just before noon. A 1.5 hour MRI took over 2 hours.  Cara did great and we are happy to head home.  “Call your doctor’s office on Wednesday for the results.” The pain and fear tightens it’s wrap.

Wednesday. “Hello. I am calling to see if you have received the results for Cara Williams’s MRI.” “I will check with the doctor and we will give you a call back.” A couple hours later. “Hello Ms. Williams. The doctor would like you to come in tomorrow to go over the results.”

February 3, 2011 we found out that our daughter has significant, permanent damage to the central portion of her brain that had a global affect. Cara suffered hypoxic ischemic encephalopathy (HIE), a condition in which the brain does not receive enough oxygen.

Wheelchairs, mental retardation, involuntary movements…cerebral palsy??  This is our reality.

I left the doctor’s office and my world came crashing down.  Pain, fear, sadness and anger swept in and took over.  I cried for the next week. I found myself holding my breath, eyes shut tight and fists clenched until the wave of pain went down.  This is all I could do to keep from collapsing and shattering. I wanted to scream until I had no voice, pound my fists until they were broken  and run until my legs gave out.

I sat with Natalie on the couch holding Cara.  I told Natalie that Cara has an ouchy in her head.  Natalie looked at me, smiled, bent down and kissed Cara on the top of her head.  “It’s okay baby sister.”

One thing I could hold on to was that now we know what is wrong and we can move forward. Stem cell therapy, physical therapy and providing as much stimulation for Cara’s brain as possible. We can help her brain to compensate for the damaged portions.  There is so much hope. We are done right???? The damage is done and we can work on fixing it right??? Time to move forward??

Not yet.

I wake up every morning.  Give my daughter a kiss and whisper to her. “I love you. I have faith in you. I believe in you.” I need everyone to have faith in Cara.  Having faith in her is the greatest faith you can have in God and in life. Have faith that she can fight this.  Cara, with love, can continue on her path in life with strength. Have faith that our beautiful little girl can do more than dream and wish. Have faith in her that she will live these dreams.