Welcome To Holland

There is an essay that has been circulating around the disabled community for quite some time and you may have even seen me post it on my personal Facebook page. It’s called, Welcome To Holland.

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.



Okay, so as Wendy’s mom, I personally never mourned over not having a normal baby. I knew at 23 weeks pregnant that I was going to have a “abnormal” baby and I was fine with that and I was totally up for the challenge. In my personal experience, I think when I got to the airport my ticket would have already said Holland because I knew exactly where I was going.  But my point is, this is a really great way to to tell people how it feels to be raising a special child.

Just FYI: most SN parents LOVE Holland and now wouldn’t dream of going to Italy.

Life Worth Living

Those two pink lines can change your world,

but so can a doctor with a few simple words.

“Abnormal” and “rare” will scare an expectant mother to death,

but she knows she’ll fight for her baby until her last breath.

Being a special needs mother is no easy task.

Putting herself first is a thing of the past.

She becomes an advocate and expert and learns to persevere,

because her child has come first since they have been here.

As a mother, she’s always fighting and constantly giving,

because her child was given life, and that life is worth living.

Pouty Lips and Temper Tantrums; Reining In the Terrible Twos

The terrible twos isn't just something special needs parents go through. Unfortunately, this ugly phase is something all toddlers will experience to a certain degree. Some kids may experience them as early as their second year, beginning right after their first birthday, others may be two or three years old. Wendy is almost 22 months old, and the TT’s are in full force!


She has the sweetest little face, so it’s SO HARD to tell her no to anything, especially when she does that pouty little lip and looks up at you with those big, dark blue eyes, but it’s something that has to be done, usually for her safety. Most of the time, I’m telling her no, don’t eat this or no, don’t pull on your feeding tube when she freaks out and throws a huge tantrum, but there are other times when I can simply be changing her diaper or carrying her to another room and she gets mad. And boy does she know how to throw a fit! When a temper tantrum strikes, my sweet, precious Wen turns into a 16lb Tasmanian Devil that I can barely control.


Luckily, for me, this phase won’t last forever and the signing is helping give her a way to communicate, so we’re hoping that will help too. Being almost 2 and nonverbal is difficult. She can’t tell me what she wants, so she slaps me in the face or pulls my hair. It’s a good thing she’s so adorable or she’d probably be getting away with a heck of a lot less!  ;)

My child is different and I’m not afraid to shout it from the highest mountain.

Today I was sent a message on Facebook saying things like “Wendy will lead as normal of a life as you let her” and that “no one would know Wendy was special needs if I didn’t point out her differences” and for many reasons these things bothered me. This person, who I will keep nameless for their sake because I know many of Wendy’s followers would love to tell this lady off, sent this message because she said I was making her comment about becoming a grandmother about Wendy and her disabilities, which was not my intention, I just said that my mom had tried to do similar things but didn’t work out because Wendy ended up being a special child and I keep her with me all the time (if this makes sense, I’m trying to be vague as to not totally give this person away).

Did you know that 1 in 5,000 babies are born with an imperforate anus? Probably not, because I didn’t before Wendy was born and it’s probably because nobody talks about it. No one would have ever known Wendy was born without an anus had I not chosen to share it. But I did share it, because if I’m secretive about it, then she will feel like she has a reason to be embarrassed about it and Wendy is perfect in my eyes and God’s. He made her that way, so she should be proud of who and what she is. Other than Wendy’s small size, physically, she looks healthy and most people wouldn’t know that she was born with various birth defects and will face a life of the unknown, but if people comment about her small size, I’ll quickly tell them a little about her and her differently-abled-ness. Hell, I may just bring up something about Wendy and her chromosome disorder just because you mention your healthy grandchild, just like any other may mention that their child did this or that early/late. I have learned to be Wendy’s advocate and I am her voice. I will talk about her disability as much as I can and because of that, thousands of people know about Wendy and pray for her and if you don’t care to hear about it, unfriend me.

As far as me letting her live a normal life…  Am I overprotective? YES! I spent most of my pregnancy not knowing if she was going to live past birth and then 71 excruciating days standing over her in the NICU, so excuse me I keep her close and protect her as much as I can. That doesn’t make me a bad mother, that makes me a caring mother. Would I have treated a “normal” baby like I treat Wendy? I don’t know. I’ll probably never know. All I do know is that I’m doing the best I can with Wendy and what we’ve been given. I also know that I love Wendy with every part of my being and I will do everything in my power to give her the best life I can and if you think that means I’m holding her back, then I thank God that you weren’t given a special child and I was. 

Where We’re At… And Where We Need To Be

If you’ve been following Wendy then you probably already know that she passed her swallow study a few months back and we have began feeding her. Right now, Wendy is still on Neocate Infant formula via g-tube. She takes 920mL a day (which also happens to be 920 calories a day). At this point she’s not losing weight so for her small 15lb body, 920 calories is sufficient to sustain her and let her grow. The downside to that is, it’s going to take a heck of a lot of baby food to get 920 calories by mouth a day.


We have begun experimenting with Gerber ‘Lil Entrees and Wendy seems to love them, as well as baby oatmeal mixed with any pureed food, Gerber Puffs, and freeze dried fruits and veggies. She’s also drinking a bit of Gatorade, apple juice, and sweet tea (all mixed half and half with water, of course). Wendy’s total consumption of calories (other than formula via g-tube) was 12 calories from the 1/3 tray of Gerber pasta, 5 calories from the 15 Gerber Puffs, and about 4 calories from the 5 fruit & veggie melts. So todays today calories consumed by mouth was 21. That’s a long way from 920.


The best I’ve found for Wendy so far to get more calories is the Gerber Oatmeal. It’s 60 calories for 1/4 of a cup, and she can usually eat about that much in one sitting. Then I’ll add about 1/4 jar of baby food to it (which adds 20 calories) and I fill the rest with apple juice or water. If I add apple juice, that’s getting it close to 90 calories for one feed, which for Wendy is obviously great.


Even though the oatmeal has the most calories, I don’t like to limit her to just that every day. I want her used to eating different textures and tastes.  I’m sure we’ll get there eventually, but it’s just going to take a while.  And also, it’s not all about the calories, you have to look at protein, carbs, fat, vitamins & minerals, etc. but for the sake of comparison I just used calories.

ER Visit

It’s 7am and I haven’t slept since the night before last. As many of you probably know from following Wendy on Facebook, she’s been sick and running a fever for the past 2 days. After trying to go to sleep last night she woke up crying and hurting pretty severely. I cuddled her and tried to keep her as content as possible. Around midnight she vomited on me and her, so I went to change her clothes. As I was changing her, I noticed her chest was swollen, her pulse was well over 200, and her breathing was labored. It was like she was holding her breath for a moment in between each breath. I told Zed immediately I was taking her to the ER. I would rather be safe than sorry and I knew I’d never sleep while being worried about her. Zed had taken his sleeping medication and was kind of out of it, so I called my mom. (Also, Zed isn’t the best at handling stressful situations, especially when it comes to Wendy.)

We arrived at Athens Regional around 1am. The lady who took our name as we went in was being crappy and absolutely not worried about us because she was talking to co-worker about ordering shoes online. She obviously wasn’t paying attention when we said Wen was having problems breathing. So we got someone else’s attention and said we needed to see a doctor, now. They took us straight back.

We met with the doctor and he said, after examining Wendy, that her throat was red and her chest sounded congested in the front, which could be causing her chest to be swelling. She was also still running a fever of 101. He said he wanted to do blood work, chest and abdomen X-rays (to make sure her intestines weren’t twisted since she was born with intestinal malrotation), a urinalysis, and flu test. Her blood work, flu test, and urinalysis all came back fine (we are still waiting for one blood test to come back, it takes 24-48 hours). Her chest X-ray wasn’t terrible and her abdomen X-ray showed she was still constipated and gassy. We did a breathing treatment and they gave her Tylenol. She was diagnosed with a viral syndrome and upper respiratory infection. Since both of those are caused by viruses there is nothing we can do, except wait it out because antibiotics won’t kill a virus. We have to follow up with her pediatrician tomorrow.

Wendy is now sleeping. I’m hoping I will be able to fall asleep shortly. I have a feeling Wendy and I will be doing a lot of laying around and napping today.

2 Appointments In 1 Day

Today I had to take Wendy to two appointments, luckily only in Athens and my mom went with me to help. Her first appointment was to check her kidney reflux to see if we needed to continue giving her Bactrim daily and to see if we needed another follow up with a urologist. As you may or may not know, Wendy was born with right grade 1 VUR (vesicoureteral reflux) and mild left hydronephrosis. VUR is when urine back flows into the kidneys and hydronephrosis is swelling of the kidneys. The days after she was born, when they were checking all her major organs, a renal ultrasound showed mild hydronephrosis on her left kidney. Three weeks later a VCUG showed the grade 1 reflux on her right kidney. Because of that, she was put on amoxicillin daily for UTI prophylaxis. We were scheduled to follow up with urology after she was discharged from the hospital. When we met with urology, she was 3 months old, and they performed another renal ultrasound. That ultrasound showed the hydronephrosis was no longer present but Wendy still needed antibiotics for the VUR. They switched her to Bactrim since that’s more suited for children over 3 months and she’s been on it since then. Grade 1 reflux is usually something kids grow out of, so today we went to have her kidneys checked.

Today they did a VCUG (voiding cysto-urethrogram).  We had to strip Wendy down and put her in a hospital gown, then a nurse cleaned her bottom with iodine. Then, they inserted a catheter while a technician and myself held her down. The catheter was used to put a contrast dye in Wendy’s bladder. Once Wendy’s bladder was filled, the technician began taking x-rays. We had to hold her down until she urinated and emptied her bladder. As she was going potty, the contrast showed whether or not her urine was backing up into her kidneys or not. After her bladder was empty the catheter was removed and we were able to go home. About 2 hours later (when we were just leaving therapy), Miss Ivy called from Dr. Martin’s office to say Wen’s kidneys looked great and no more Bactrim was needed.

We also had her first appointment with a feeding therapist today. (Now do you see why I had to have my mom go? It would have been too exhausting to do all of that alone because Wendy is a handful and a half, HAHA!) Not much happened with feeding therapy. The therapist just wants us to work on desensitizing the back of Wendy’s mouth since she mainly chews with the front and said we should try to give pureed food a little more texture, which I already do because Wendy does better with thicker consistencies. We go back Monday for another therapy session and then next Wednesday is her well check appointment with the pediatrician. We’re going to try to get Wendy an Infinity pump so she can wear it in a backpack so she won’t be so constricted and limited in her movements.

Wendy’s really been doing pretty great. She’s loving the Gerber Puffs and Crunchies and she’s getting better at using her sippy cup. Hopefully things will continue progressing in a positive manner.