When the train derails....

I haven't blogged in a while. I kind of disconnected for a bit because I was feeling overwhelmed. I needed to step back and recharge. Now that I'm "recovered" I figured it would be a good subject for the next blog.

When you have a special needs baby the information starts pouring in. One of the things you hear over and over is "make sure you don't get overwhelmed". If you're anything like me you realize how important their advice is but you don't really know how to put it into practice. Hopefully my experience can help.

I think, unfortunately, we have to burn out at least once. I didn't learn where my breaking point was until I was already there. Now I know better. But the first time it's like watching a train wreck. By the time I saw it coming it was too late to stop it. Now I recognize the signs. Next time I start approaching burn out status I can head it off. Everybody is different and you'll have to pay attention to your own personal cues and triggers. I don't want to share my own cues for fear that you'll focus on those and miss your own.

I will share the things that I've found to help keep it from happening though. Things that can also help pull you out of that place. You have to evaluate all the advice you get and see what works for your family. For me I learned that I need to get outside. Teegan is non-ambulatory. He's wheelchair bound and completely dependent on me for his mobility. That can make going places quite difficult. But I can't let that keep us inside. He has a wheelchair and also a feeder seat with wheels. So we can go for short walks around the neighborhood. With his respiratory problems I don't like to keep him outside too long. Especially during pollen season. But I can also put him in his feeder seat and roll him over to the sliding glass door. That way I can spend some time in the backyard without negatively affecting him. I tend my roses and I'm planting a small herb garden. Sunshine helps the body produce Vitamin D and can also help alleviate the symptoms of depression. Just make sure you remember your sunscreen!

If you are lucky enough to have insurance that covers in home nursing, use it! We had a nurse for about 3 months and it was wonderful. Unfortunately the state I live in cut pediatric nursing out of the budget. Even if you are your child's primary provider use the nurse for respite care. Even if you don't go anywhere, just letting somebody else worry about your child's care for a day can be a huge help. Sometimes I was glad just to be able to do the housework with out having to keep checking on Teegan.

Even if you don't have nursing you have to make a way to have some time to yourself. Teegan is what's called total care. He has a trach and he still has trouble breathing sometimes. He requires constant supervision. I wheel him around the house with me. Whatever room of the house I'm in, he's right there with me. So making time for myself is quite a challenge. I just didn't do it for a long time. I thought "I'm not a high maintenance person, I don't need much. I'll be fine." Well, I wasn't. I've come to realize that's just not a healthy way to live. I take small moments here and there, and they add up. I enjoy reading, which is clearly something I can do with Teegan right next to me. But it's easy to get lost in a good book. So I set a timer for 15 minutes. I get a bit of me time and if I get distracted by the story the timer reminds me to check on Teegan. It may not seem like much but believe me, 15 minutes here and there will help stave off the burn out.

So to recap: get outside, use the resources that are available in your area for special needs kids, and carve out time for you. I cannot stress how important the last one is. Maybe because it was so difficult for me to do. Even if it seems impossible there is a way. You just have to find what fits in your life and works for your family.

And please realize you weren't meant to do this alone. Enlist the help of the people that love you. Most of them want to help you, they just don't know how. Let them know what you need. It is my sincere hope that this helps someone out there. Good luck and thanks for reading!

I had no idea I felt that way!

    I discovered a rather surprising instinct the other day. I really, REALLY want to feed my child. It's not something I had ever really thought about. Our kids are hungry, we feed them. It's a matter of filling a need, I suppose. But perhaps there is an inner drive, an unconscious desire to nourish our children.
   Teegan can't eat by mouth. He can't control where the food goes. Sometimes it makes it to his tummy, but sometimes it goes in his lungs. So he has to be fed by a tube that goes directly into his little belly. Once in a while I give him a taste of soft foods. Yogurt, pudding, stuff like that. Well I decided to get him a jar of baby food. I wanted to expand the tastes he was getting. I sat down with the jar and a spoon and gave him a taste. I was blown away by this overwhelming desire to actually feed him. I wanted so badly to put a full bite on the spoon and give it to him. It was so strong that I had to put the jar away.
    I'm so amazed at this new found feeling. I wonder how many moms like me there are that have felt the same way. Why didn't I feel that way all the times before, when I gave him a taste of something I was eating? Is it because the food was solely for him this time? He gets the nutrition that he needs, so why do I feel like something is lacking. I guess feeding a child is so natural. I think we instinctively want to feed our children. On a cellular, primal level we NEED to feed them. I had never considered that. And before I sat down with that jar of apples I hadn't realized that I was missing that. I didn't know that I deeply needed to feed him.
   Of all the things that are "missing" from raising a child with developmental delays I hadn't realized that feeding from a spoon was one of them. I long to see him sit up, take a step, say "mommy", and the list goes on. Now I can add "eat from a spoon" to that list. In a way it's good though. Being able to eat is probably one of the more attainable goals for him. He's able to do it, just not consistent enough. As he grows and strengthens he could become more consistent at swallowing. Here's hoping. The list is growing longer. It would be great to cross something off.

Happy Birthday Teegan!!

   Centuries ago, when people started celebrating birthdays, it was because the mortality rate was so high that each year a person survived was an occasion worth celebrating.  Today we take birthdays for granted. We celebrate because it's just what people have done for century upon century. It's a reason to have a party, gather with friends and family, and get some cool stuff.  :)  We have forgotten how fragile life is. Surviving another year is no longer a monumental occasion. In fact, we tend to lament each year as we get older.
   Today is Teegan's second birthday. It is a monumental day for me. The fact that I have been blessed with another year with him is amazing. I no longer take birthdays for granted. Not just his, but all of my kids. I think I understand the person who threw the very first birthday party ever. I'll bet it was a mom. I can picture her, on her child's first birthday, rocking that child and thinking how lucky she is that her baby is still in her arms. I imagine her telling her husband that they must celebrate. Gather all the family together. Maybe she made a special blanket to commemorate the occasion. I understand now why we celebrate. Each year is a gift, a milestone, something to be immensely grateful for.
   I recently learned that in the state of Nevada the legal definition of death is if your heart stops beating for 60 seconds. One minute, such a short length of time. It takes longer to get a cup of coffee. Last April Teegan's heart stopped for 10, maybe 15 times that. I can't bring myself to actually type the words...to see it in black and white...but I'm sure you know what I'm getting at. I joke that he had to run back "home" because he forgot something. Maybe he forgot to give Heavenly Father a hug and kiss before he left. Or there was some crucial instructions for his time here on earth that he forgot to get. I picture a kid heading towards the school bus, then realizing he forgot his lunch box and running back to get it. (I have quite the imagination, in case you couldn't tell.)
     I cherish each moment with Teegan. Almost losing a child will do that to a person. But truthfully, it could have been any one of my kids, for any number of reasons. We expect to live to a ripe old age. We expect to watch our children grow up. We expect to become grandparents. But none of that is set in stone. Teegan has taught me that. And for that reason I have come to cherish each moment with all my kids. Each one of their birthdays is a joyous occasion. Every hug, every giggle, leaves it's mark on my heart. Having a child like Teegan....well....it's the hardest thing I've ever had to do. I'm just grateful that I can find the good, see what I've learned, how far we've come as a family. He brings out amazing qualities in my kids. He shows me just how awesome they are. I'm so grateful for the two years I've had, and pray I have many, many more.

Teegan's Highlight Reel

   I realize there's still a lot to be told in our back story. But Teegan's had an outstanding couple of weeks, while the last couple days have been pretty yucky for me (for other reasons).  So for the sake of my sanity I'm going to write about Teegan's recent days.

   Ok, I may have fibbed just a little. To highlight just how amazing his new developments are I have to tell you a smidge about April 15, 2010.  It was Billy's sixth birthday.  We had a jumper and the neighbor and Billy were playing in it.  Will and I were setting up for the few people that we were expecting.  Teegan was napping.  When I went in to check on him he wasn't breathing and was non responsive.  Paramedics were called, CPR was started, and I'm honestly not emotionally prepared to completely revisit that day yet.  But I will throw in a shout out to the officer and paramedics who saved my son's life that day. 

   About six weeks in the hospital followed.  Tests were run and the neurologist told us our son was severely brain damaged.  Just as bluntly as I just told you.  Guess he's not much for bedside manner.  I told you all this because I want you to understand how amazing Teegan's recent accomplishments are. That doctor listed Teegan in a "persistent vegetative state".

    Skip to present day.  Teegan had lost all the progress he had made on that day in April.  It was basically like taking home the "newborn Teegan" all over again.  And there hadn't been a whole lot of progress since then.  That was until about three, maybe four weeks ago.  I noticed more responsive behavior from him.  He had more voluntary movement, always in response to noise or touch. His feet are ticklish again. He moves his arms when he's touched. He had always squeezed something that was put in his hands but now he was starting to move them back and forth.  Then two weeks ago he rolled from his side to his back.  All by himself.  It was astounding.  It was amazing.  It was all sorts of words that start with A.  (heehee)  But seriously, I wish I could convey to you what it feels like to see your child do something that the doctor said he might never do.  Will and I never fully accepted the doctor's report, but it is satisfying to finally have a visible manifestation of our faith.  Now I can't keep him on his side. A couple days ago he figured out how to get from his side to his belly, too.  He doesn't have the strength and/or muscle control to get his arm out from under him, but I believe that's coming.

    I'm just so amazed at how quick Teegan's progress has been. It's like a switch was flipped. His brain finally started saying "hey, muscles, get to work! We've got a lot of catching up to do!"  lol  He can tolerate longer periods of therapy, he's not that far from the point he was at before April, oh and he's gone three consecutive days with only two seizures per day. He was having anywhere from five to eight. I truly believe that by the end of this year I will see my little man sit up. One day, I will watch him walk.  One day, I will hear him call me mom.  One day, I will pull out that hospital discharge summary that says "persistent vegetative state" and throw it in the fireplace.  :)

Good night everyone!!

Background (Chapter 2)

  I'm not feeling well today so I'm trying to take it easy. Seemed like a good day to sit in front of the computer and write Chapter 2. Travel with me now back to the morning of February 28, 2009....

   Sometime around three or four am I woke up with stomach pain. It wasn't very painful and I thought it was just the typical gas pains that I get late in my pregnancies. I was scheduled to work that morning so I just rolled over, hoping to get a couple hours more sleep. At 5:30 I got up for work. When I stood up I felt the blood. I went to the restroom, I suppose to verify that it was indeed blood. I was strangely calm. I opened the bathroom door, asked for a towel, and told my husband to get ready because we were going to the hospital. Perhaps I didn't want him to panic, or maybe my base survival instincts kicked in, but I just remember being so "matter of fact" about it all. As if we were headed to the grocery store.

  When we got to the hospital they sent us straight back to maternity. I told the triage nurse that I was bleeding. She very calmly gave me the paper clothes (you all know what I'm talking about lol) and said "Let's see how much blood there really is." When she saw she said "Wow. We need to get her into surgery right away." That was right about when I entered panic mode. If the nurse is scared you'd better believe the patient is. I can remember as they were prepping me there was a scheduled c-section patient complaining because she was getting bumped. I'm normally a very sympathetic person but I wanted to scream at her insensitivity. Although even at that point I didn't realize how much danger Teegan and I were in. I mean, it's 2009, people don't die in childbirth anymore...right?

  That was my first (and only) experience under general anesthesia. I remember her telling me she was going to start counting backwards from 10. I never even heard her say "10". When I woke up they called the pediatrician in. She told me that Teegan wasn't breathing as well as they wanted him to, so they were transferring him to a hospital with a NICU. So I had to spend the next hour in recovery, alone with that knowledge. I can't imagine what my husband was going through during my c-section. Alone in the waiting room, waiting for someone to tell him something, anything about his wife and son.

  They took me to my room in time for me to see Teegan before they transferred him out. My first moment with my baby lasted just a couple minutes. I couldn't hold him. He was intubated. The transfer team was already there. They held his transfer so that I would have a chance to see him before he left. Mercifully the hospital staff put me in a room with another mother whose baby was transferred out. I don't know how I would have handled having to share a room with a perfectly healthy baby. Sometimes our human emotions can be quite unfair. Like I was somewhat jealous that Will was able to see Teegan and I couldn't. It was totally unfair to him, and of course I wanted Will to see him, but it still stung a little that I was stuck in the hospital for three days.

  Turns out my placenta had torn away from the uterine wall. Hence all the blood. In case you didn't know, when that happens the baby starts to lose it's source of oxygen. When my OB came around the next day he said "You were very lucky." Those four words are what made me realize that Teegan and I actually could have died. I never considered that could happen in this age of modern medicine. Revisiting that day has reminded me how truly blessed we are. Life with Teegan is challenging no doubt. But I thank God that he is still here. I can hold him and hug him and pinch his cute little cheeks.

  Well, I think I'm going to wrap up the "background blogs". I have all these ideas floating around in my head, subjects I want to address. There is still one particular day in our life that I will be revisiting. I just don't think I'm ready to go back there yet. So for now I'm going to go hold my little angel. You all have a great day!

Background (Chapter 1)

   Since Teegan is almost two years old, I need to summarize our lives up to this point. I think it will be easier on me as the writer and you as the reader if I do it in parts. Thus begins Chapter One.

   There's no such thing as just a special needs child. A child's disability affects everyone in the family; parents and siblings. You have now become a special needs family. It would be impossible for me to write about Teegan without mentioning his impact on all of us. Therefore, I must introduce you to the members of our party. I have five amazing boys and two awesome stepdaughters. My oldest three are with my ex-husband, then there are my twin stepdaughters, then my last two boys with my forever husband. Teegan is the baby of this bunch. All six of his siblings are healthy.

   And now for Teegan's birth story. I am hypothyroid, which makes it a high-risk pregnancy. I wasn't that concerned though. After all, I had four healthy pregnancies already. During my first ultrasound, they discovered mild hydronephrosis (fluid in the kidneys) and mild ventriculomegaly (ventricles in the brain were dilated). Both conditions have about a 90% chance of a normal outcome so the doctor wasn't very concerned. He said it was just "something to keep an eye on." My next two ultrasounds were the same. The conditions were still there but still very mild. I walked out of that first ultrasound feeling fine. Sometime in the next couple days I started to worry. At some point I just "knew" that something was wrong. I pushed that feeling aside, chalked it up to the ultrasound. "The doctor isn't overly concerned so I shouldn't be either" was what I kept telling myself. I never gave voice to that feeling. I wish I would have. I firmly believe in mother's intuition. I tried to ignore it though. I felt like if I didn't say it out loud than it wouldn't be real. Looking back on it now, I feel like I cheated my husband and I out of the chance to mentally prepare. If I had spoken up maybe we would have done an amnio, maybe they would have looked closer at the ultrasounds. Never ignore that feeling that something may be wrong. Call it mother's intuition, call it the voice of God, call it whatever you wish, just listen. It's usually real and it's usually right.

  I still have a lot of story to tell. However, I don't want each blog to be too long. So I'm going to end here for tonight. To my friends and family, I'm still interested in your feedback. Your opinions carry a great deal of weight with me, so let me know how I'm doing. To strangers who may have happened across this blog, I hope what you've read helps you in some way. Thank you all for taking the time to join us in our adventure.

 

"Why Holland?" you ask...

Welcome to my very first post on my very first blog. Hopefully as time goes on my posts will be more polished. I shall valiantly try to keep this from becoming an online "diary". My husband and I have spent the past two years feeling very much alone. I know at times I have longed for someone else who has been where I was. My wish is that maybe I can be that person for someone else. Maybe there is a mom out there who will find this blog and feel less alone, maybe find some encouragement from the words that I write. I hope so.
Today though, I want to explain the title of this little blog of mine. There is a lovely essay circulating out there written by a woman named Emily Perl Kingsley. It is her attempt to describe what it's like to have a special needs child and she does so beautifully.

Welcome to Holland

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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.



So you must go out and buy a new guidebook. 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, 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."



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

Written by Emily Perl Kingsley

When Teegan was born our family touched down in Holland. Here we are, and here we shall stay. So, this blog is about our adventures here. Good or bad, painful or beautiful, it will all be here. And if you're a new parent of a special needs baby staring into the great unknown, you're not alone. I invite you to learn from what I've learned and continue to learn. We have a long road ahead of us. No need to travel it alone.