Let's Be Honest

Long before the cerebral palsy diagnosis, I got over feeling bad for myself, but after the diagnosis came I couldn't seem to grasp what that meant for Tennyson. What would her future look like? Would she ever walk? Would she talk? Will she live with us forever? Will my body be physically capable of caring for her as she grows? I wondered if she would ever do things I loved doing when I was a child. Would she be able to run on the beach and play in the sand? Or ride bikes with other children?

I found myself making doctor appointments for little things because I was still convinced something was wrong with me and it was being missed. During one of the appointments, the doctor asked if I had been under any stress recently. That was all it took. I couldn't even just say the words without crying. Through tears, I told her my daughter was diagnosed with cerebral palsy and I immediately followed it up with how much I loved her and how happy she made us and  how thankful for her we were - in case there was any question. I told her I began having anxiety about her future because we had no idea what it would be like.

Thankfully she said, "I would be worried about you if you weren't having those feelings". I was relieved. She prescribed me an anti-depressant to help with my anxiety attacks and I had to meet with a psychologist once a month for as long as I took them. At first, I was not thrilled about adding another appointment to our already insanely busy therapy and doctor schedule, but after I went to the first therapy session, I knew it was a good thing.

I had no idea my meeting with a psychologist would lead to answers about my health which I was so desperately seeking. During one of the therapy sessions, I mentioned that nobody could tell me what went wrong with my pregnancy. All of the recommended tests came back normal. I wondered if I could have a healthy preganacy. I wondered if it was even safe for me to have future children. Due to that conversation, the psychologist referred me to an OB/GYN doctor so I could talk about my concerns.

I went to the appointment and I felt better after talking with the doctor. She noticed I hadn't been tested for everything that might explain the blood clots in the placenta. She ordered the tests and I had blood drawn. About 6 weeks later, I found out about the MTHFR gene mutation I have and I was finally able to find some peace with what happend. Even though I had more questions, now I had an answer.

I stayed on the anti-depressants for about 4 months. Taking anti-depressants definitely served their purpose and helped me get through one of the most difficult times of my life. For the first time in a long time I saw ME when I looked in the mirror. I felt different about our future and about Tennyson's future - I felt hopeful. I knew I didn't need to stay on the medication long-term, so I stopped taking them. I did not have a history of anxiety before Tennyson's birth. The medication was only necessary for this short transition period.

{word of advice - you should always consult your doctor before you stop taking any medication. I stopped abruptly without consulting my doctor and looking back that was really, really stupid. I had some crazy withdrawl side effects and I won't ever do that again...lesson learned.}

There are two pieces of writing I came across (at different times) that I could identify with. They helped me feel like I was not alone with the feelings I was having in the early days, especially when Tennyson received the diagnosis of cerebral palsy. I want to share them with you. If you are new to the "special needs" community, you might find some comfort in reading them. And even if you aren't, it might help you to understand more of the emotions and phases that people go through. You need to read the first one, to fully understand the second.

Here is the first one:

Welcome To Holland

By Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Here is the second:

Amsterdam International

By Dana Nieder

uncommonfeedback@gmail.com

© Dana Nieder 10/2010 All Rights Reserved

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

 
You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

I hope you enjoyed those two stories. I no longer spend weeks, days, or even hours in the airport. I left the airport. I have airport moments, but even those are few and far between. I hope people realize mental health is a really important issue, not only for new moms, but especially for moms who didn't have a typical experience or typical children. People don't talk about it very often, but there is no shame in getting therapy, or taking anti-depressants. I'm not ashamed to admit I needed some extra help and neither should anyone else.

E-mail me at tennsense@gmail.com with questions or feedback.

Amy

The First Year

September 2009 was the start of our new life as a family. We brought Tennyson home from the hospital after a 3 week stay in the NICU and we were sent home with a long list of follow-up appointments she needed to go to. She had to go to the eye doctor, audiology, cardiology, her pediatrician, neonatologist, neurologist, and be enrolled in early intervention services. In the first month alone, she had more doctor appointments than most babies have in their first year.

One month old

To be honest though, she was a very different baby than the one we got to know in the hospital. She was thriving! She gained an entire pound during her first week home! She got big squishy cheeks and although she didn’t have any baby fat rolls, she looked really healthy. She settled into a good routine and we were genuinely enjoying getting to know her personality and being new parents. I loved dressing her up and giving her baths and snuggling with her in the mornings. As new parents we were exhausted and sleep deprived because we couldn’t get more than 2 hours of consecutive sleep at a time. It’s truly amazing how much you don’t appreciate sleep until you don’t get to sleep anymore. All those times I was able to sleep in, uninterrupted, until noon, were completely taken for granted.

6 weeks old

The first month home was an adjustment. My husband was back at work full time while I stayed at home and cared for Tennyson. She went home from the hospital on two seizure medicines and I worried regularly she would have a seizure while I was home alone with her. I was completely in love with my little girl. She had given us such clarity on what was really important in life. It was getting hard to believe the poor prognosis that had been given to her in the hospital. I hated taking her to the doctor. I always worried she would pick up a cold or a virus. {I don’t know why complete strangers think it’s okay to touch your baby!} The doctors would pull her legs and arms every which way in order to determine if her muscles had high or low tone, or if her body was regulating it properly. They checked reflexes and her eye tracking. Everyone was constantly evaluating her, writing down their own opinions and it was hard not to take their opinions personally. The doctors told me how critical the first two years were and I felt enormous pressure that my actions would directly affect how much she would be able to do later in life.

2 months old

One of the first times I left the house alone, I went to Walmart. Tenn was with the husband. I don’t know if it was just having the chance to be alone with my own thoughts for the first time or if I was just emotional in general, but I just sat in the parking lot and cried. I called my mom and told her I didn’t want to take Tennyson to any more appointments and that I hated taking her to them.  She told me I had to take her to them, and I knew I did, but I didn’t want to hear any more bad news. It was emotionally draining. Eventually I got used to hearing the same things . . .  “she has tight hips”, “she needs to work on her head control”, “her head isn’t growing at a normal rate.” I was doing everything and more they were telling me to do.

Tennyson's first Halloween

We moved from Kentucky to North Carolina when Tennyson was 3 months old. Moving with an infant was quite an experience. Looking back, I don’t even know how we did it! But we did. We transferred all of her medical care and doctors and set up new early intervention services.

Sleeping with Daddy

We went home for Christmas to introduce Tennyson to our family and friends that hadn’t met her yet. She did great. She started sleeping through the night while we were on that trip. She continued to sleep great for us when we returned home, which was a very welcome change.

3 months old

When I was pregnant I worried about random stuff . . . will she be good at sports, will she be smart, but never worried if her head will grow. When doctors started mentioning she may have microcephaly, I looked it up on google and did an image search. Worst idea ever. It scared me to death! I searched how to make the brain grow, like foods, and I couldn’t find anything that can make the brain grow. It was a really helpless feeling. I would measure her head before appointments to see if I was getting the same measurements as they were. I would argue with nurses over a quarter of a centimeter when we had different measurements. When I would give her a bath at night I’d say, “let’s wash your hair with the magic head growing shampoo”. I became obsessed with measuring her head and trying to explain away why she wasn’t catching up on the growth chart. I prayed a lot at night. I would fall asleep praying for her head to grow. But it just didn’t grow. She was diagnosed with microcephaly at 4 months of age by her neurologist.  She had x-rays taken to see if her sutures in her head had fused early which would prevent her brain from being able to grow, but the sutures were open. Eventually I just had to get over the fact that I couldn’t do anything to make her brain grow. That was hard. That was the first visual sign for me that her brain was damaged. Nobody could really tell by looking at her until about 9 or 10 months of age, when she was growing long, that there was something disproportionate about her body.

3 months old (again)

When a baby is born prematurely, his or her progress is tracked by two different ages: the real age and the adjusted age. To get a baby’s adjusted age, you subtract however many weeks early he or she is from the actual age. Tennyson was born 5 weeks early. So if her real age was 5 months (20 weeks) subtract 5 weeks from that and she would have been 15 weeks – or just at the end of 3 months for her adjusted age. I took it further than the doctors did though. When Tenn was born she was the size of a 30 week gestation baby so I subtracted another 5 weeks (from 20 weeks minus 5 for her adjusted age) and then I took into account that she just laid in the hospital for 3 weeks, so I would subtract 3 more weeks. So while everyone else expected her to be meeting 3 month old milestones, I gave her the benefit of the doubt and expected her to be at a 7 week old.

This helped me not worry too much when she failed to meet everyone else’s expectations. She started smiling around 3 ½ months old and I finally heard that sweet little giggle at 4months of age.

4 months old

She started physical therapy in January at 4 months old. She started out with an hour a week. Things were going well and although she wasn’t meeting milestones according to her real age, she wasn’t too far behind her adjusted age. She did show some improvement though.

That all changed when she hit 5 months of age. Her development for gross motor skills (sitting, crawling, and standing) came to a standstill. She also, had yet to develop any fine motor skills (talking and grasping) and still wasn’t reaching for toys. Her arms stayed by her sides. Even though she could track a toy visually, she never reached for them. Most of her physical therapy sessions were spent going through the motions of rolling over and deep stretching to loosen her muscles.

Tennyson at 5 months old

When her development stalled, I began to have anxiety attacks. I would wake up in the middle of the night and I literally thought I was going to die. My heart would beat so hard in my chest that I couldn’t think rationally about what was happening. At that time, I was still waiting for doctors to find answers about what had gone wrong with the placenta and why it had blood clots. The biopsy that came back from the placenta said I needed to be tested for blood clotting disorders, like lupus and protein C and S deficiencies. I lost my trust in doctors after Tennyson’s birth. I felt like they were missing something that could be wrong with me. I worried about blood clots constantly and was scared I would have a stroke. I ended up going to the emergency department one night because of chest pains and they did a full work up on me. They said I was healthy. It was really hard for me to believe them. I wouldn’t get any answers for another year.

{Just so you know, the night I made my husband go the emergency room with me, was the night the Saints won the Super Bowl! He missed the whole second half. What a guy!}

At 5 months old, I got Tennyson into occupational therapy as well as play therapy. I also enrolled her in Kindermusik classes. If Tennyson’s mind and body needed to be stimulated constantly in order to develop, then that’s what I was going to set up for her. She enjoyed her weekly music classes and it was our first chance to do something that “everyone else” was doing with their baby. It was fun and she responded with smiles and giggles. I really enjoyed the social part of it as well.

Getting bigger! 6 months old and so happy!

I worked with Tennyson for hours each day. Stretching, going through the motions of rolling, working on her visual tracking, and tummy time (which she absolutely hated!). I would put her on an exercise ball and use the law of gravity to stretch her muscles. She fell asleep each night and I stretched her for the second time. Still, there was no major development. Slowly it became obvious that Tennyson wouldn’t be like other kids. She wasn’t going to just be a little behind. I began to realize that development charts weren’t going to do anything, but make me think of her deficiencies. I put away the books on development and I focused on what she was doing, rather than what she was supposed to be doing. I listened to what doctors and therapists said about Tennyson and not a word that didn’t apply to her.

7 months old

At 7 months, she still wasn’t reaching for toys. Over and over and over and over I would place her hands on toys - showing her that she could hold them and play with them if she used her hands. When we learned that she was farsighted and had astigmatism, I special ordered her eyeglasses in hopes that allowing her to see clearly was all she needed to grab toys. She looked adorable in her glasses, but they didn’t make her want to grab toys yet.

8 months old

Then one day, around 9 months old, she did it. She grabbed a toy! It was the coolest moment! I was so incredibly happy. Not many other parents could appreciate what that meant to us. I bet I put her hands on those toys thousands of times. In my mind, I remember thinking, if I have to do every little skill thousands of times for her to learn it, I’ll do it. If that’s what she needs, I’ll do it. If that’s how her brain learns, I’ll do it.

We took a break from doctor appointments and therapies and went home for the summer to see family and friends in 2010. It was wonderful to have a mental break from all the evaluations and doctor appointments and a physical break because everyone wanted to get their hands on my sweet girl.

9 months old

We returned back to North Carolina and jumped back into a new routine with more therapies and new therapists. At that time, Tennyson was receiving about 6-7 therapies at our home a week. She wasn’t talking or sitting independently, and although she started to roll from her back to her tummy, that skill disappeared by the time she was around 11 months old. It was frustrating. We were both working so hard and it was certainly not her fault that her body wasn’t cooperating.

10 months old

I knew what was coming. I didn’t want to ask the question, but the time had come to just ask it and get it out there. I had an appointment with Tennyson’s developmental pediatrician. I asked her if Tennyson’s H.I.E. diagnosis would encompass her muscle tone issues or if I could expect another diagnosis soon. She said, “Are you talking about cerebral palsy?” and I told her, “Yes”. She said that in her opinion Tennyson would be diagnosed with cerebral palsy. I remember asking her if she could outgrow that diagnosis. She was honest and said that it was not likely she would.

11 months old

About a month later, the day before her first birthday, we saw her neurologist. My Mom came to visit for Tennyson’s birthday so she went with me to the appointment. I had a long list of questions for him and my Mom held Tennyson while I spoke with him. I worked my way down the list and eventually near the bottom was the same question I asked Tennyson’s developmental pediatrician. I could tell he was trying to be gentle in the way he was telling me what he was telling me. I thought I was prepared for the diagnosis, but I don’t think I was prepared to actually hear him say the words, “Your daughter has spastic diplegia cerebral palsy”. I was done with my list of questions and we talked for a few minutes about what that diagnosis meant and then we were finished. I didn’t cry in the office, but I did when we got outside. I’m thankful my Mom was there with me again. Mom always knows what to say. She said, “Look at her. She’s the same baby she was before we went in there - she’s no different”. She was right. I didn’t love her less or differently just because of a new label a doctor gave her. Life didn’t stop with a new diagnosis and so we kept on going.

Tennyson at her 1st birthday party

We celebrated her first birthday with my Mom and Tennyson’s Uncle and close friends. We reflected on where we were a year prior and just how far she had come in one year. She had a great party and looked absolutely adorable. We helped her open presents and ate cupcakes and pizza. We took a lot of photos and video. It was such a fun day!

For a girl so small at birth, she had come so far. Tennyson, has improved our lives tremendously. We have received many blessings and had many prayers answered.  

E-mail me at tennsens@gmail.com with any questions or feedback.

Amy