Saturday, February 23, 2013

Feeling Worn and Weary?

Have you every felt this way? 

I know I need to lift my eyes up
But I'm too weak
Life just won't let up
And I know that You can give me rest
So I cry out with all that I have left

My prayers are wearing thin
And I'm worn 
Even before the day begins
I'm worn
I've lost my will to fight

I bet there are a lot of special needs parents or parents with very young children who can relate to these words. I know I can. Whenever I hear the song, Worn which contains the above lyrics, I am transported back in time when Faith was a little baby. I was working full time during the day and trying to look after her at night. She did not sleep well, which meant neither Rob nor I sleep well either. To make things even harder, Rob worked overnights on the weekends.

I was in a major state of sleep deprivation. I started drinking caffeine and eating sugar everyday at work to help me stay awake. It didn't help that my thyroid was out of whack. Eventually I was diagnosed with clinical depression and put on an antidepressant. It seemed that every day for years I was exhausted, I was completely worn.
Faith's post-NICU days were filled with sleepless nights that lasted throughout her early school years
I tried my hardest to pray during these difficult times but all I could think to pray for was sleep. Thankfully, our family had a lot of prayer support from volunteers at the Healing Rooms and from friends and family as well. Through the years, Faith continued having trouble sleeping but it has gotten better. There was a light at the end of the tunnel. Currently, I am off my antidepressants and no longer even drink caffeine. God is good!

So for all of you special needs moms or moms of young children who are struggling just to get through the day, I would like to offer you encouragement and hope. There is a light at the end of the tunnel for you as well. Just don't be afraid or ashamed to ask others to pray for you and keep trusting that He will bring you through this difficult time.

Some Scriptures for the worn and weary:

Come to Me, all you who labor and are heavy laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and lowly in heart and you will find rest for your souls. For My yoke is easy and My burden is light. Matthew 11:28-30

When you lie down, you will not be afraid; Yes, you will lie down and your sleep will be sweet. Proverbs 3:24

But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31

By the way this song was written by the lead singer of Tenth Avenue North, Mike Donehey. He and his wife had two young girls and one night as they lay down in bed, his wife reached over and told him how worn out she was feeling. He knew he needed to write a song called "Worn." 

Feel free to check out my website and my other blog Having Faith 

Saturday, February 16, 2013

A Very Long Pacemaker Appointment

Earlier this week I had my annual appointment with my pacemaker doctor who comes to Bismarck from the Mayo Clinic in Rochester, Minnesota. It is a huge blessing that I don't have to travel to Rochester, which is about 600 miles from Bismarck.

I really truly thought I would be in and out - a quick ekg, a quick pacemaker check, a quick chat with the doctor and I would be done. I scheduled the appointment at 8:00 a.m. thinking I would make it to work just in time for my 9:00 shift. Boy was I wrong!

I got up to the pediatric floor at about 7:50 a.m. Yes, the pediatric floor because the doctors who come from Mayo specialize in pediatric cardiology so they are mainly there to see the kids. But since more and more kids have been surviving heart defects and growing into adults, some of these pediatric cardiologists specialize in adults with congenital heart conditions.  Anyway, so there I was on the same floor with all the kids - the same floor I take Faith to when we see her pediatrician - and I hear my name being called.

pic of a pacemaker
I first meet with a cardiologist who is doing his residency at the Mayo Clinic and has come along to Bismarck with my pacemaker doctor. He has a lot of questions about my meds, about my health, about past surgeries and about me being able to have a baby.

I patiently answer all of his questions, confirming several times that I have not had any major issues or hospitalizations since having Faith. I then hop obediently up onto the exam table where he starts checking my pulse - not just in my wrist, but my feet and my inner thigh. He tries a few times to get a pulse in my left wrist which, by the way, is nonexistent. He finally gives up and gets out his stethoscope and I began obediently breathing in and out as he listens to my heart.

Finally, I go in to the next room for them to check my pacemaker. Admittedly, I was a little disappointed I didn't get to sit in the big, soft, cushy chair like I usually did. They hook me up with electrodes then place the magnet on my chest over my pacemaker and turn on the computer. It was only moments later that the report came back - my pacemaker was pacing 100% and had two years of battery life left.

I was disappointed to hear this because I had just gotten my last battery in November 2011 and it was already on its way to expiring which meant I would have to get a new one sooner rather than later. I was also bummed to hear I was pacing 100% of the time because to me that meant my heart depended on my pacemaker all day every day which negated the hope that God was healing my heart.

It was around 8:45 at this time and I was supposed to begetting to work. Instead, I was going upstairs to the cardiology floor to have an electrocardiogram. It was the complete opposite from being on the pediatric floor, as on this floor were the older folks who had typical heart disease. I waited about ten minutes before getting in for my ekg, which only took about two minutes, I was then sent back downstairs where I was told they had to do my pacemaker check again.

My doctor explained they needed to know what was going to happen to me if my single atrial lead stopped functioning or my battery died. In other words, they needed to stop my pacemaker from pacing. This is when they explained the real reason for soft, cushy chairs - in case someone passed out when they slowed down or stopped someone's pacemaker. But I didn't have the nice chair to sit in, just a normal exam table with a pillow behind my head.

I could tell when they began to slow down the pacemaker -  I could feel my heart beating very slowly. I could really feel it when they turned the pacemaker completely off. And guess what - I didn't pass out! My doctor explained to me this meant my heart was not pacemaker dependent.

"But what about my pacemaker pacing 100% of the time", I asked him.

He said because my atrial lead was not placed as well as they would have liked (it took three hours for them to get my pacemaker implanted as opposed to the one hour it normally takes) it is safer for my pacemaker to be running 100% of the time instead of relying on my single atrial lead to tell my pacemaker to pick up my heart rate. (This is why my battery life is much shorter than other people who have pacemakers). 

Still, I wasn't done with my appointment. I had to go back upstairs to get hooked up to a 24-hour holter monitor which meant I was going to have to wear it to work. I was not prepared for this at all and I was kicking myself for not having grabbed my zip-up sweatshirt to hide my clumpy-looking chest. After getting hooked up, I was finally out the door and didn't get to work until 10:15
This is what a holter monitor looks like. Thank goodness they are much more compact than they used to be and I was able tuck it into my bra for safe-keeping. No one at work seemed to notice I was even wearing it.
I will be seeing my pacemaker doctor again in a year and in the interim, will be hooking my pacemaker up at home to test my battery function via telephone wire to the clinic each quarter. In another year I might be at the Mayo clinic for a battery, possibly even a lead change. Though I don't look forward to this, I am happy and at peace right now because my heart is not pacemaker dependent! Upon hearing this news, a friend of mine said, "Not pacemaker dependent? Wow! That must mean that your heart is dependent on our Healer!" I LOVE That!

I am so thankful to God that I am doing so well despite what I have gone through with all of my heart issues. He is truly the Healer and no matter how many world-renown cardiologists I have seen or surgeons who have operated on my heart, He always has been and always will be my Great Physician - the One in whom I can truly put my trust.

I am currently working on a book called, Having Faith, that discusses being born with a congenital heart defect then going on to having a baby with special needs of her own. Feel free to check out my website at and also my blog, Having Faith.

Thursday, February 14, 2013

Valentines Week

It seems we've been celebrating Valentines Day all week as we spent Monday, Tuesday and Wednesday making our homemade Valentines boxes and cards. Faith's class had a party today and we had our own "old school" Valentines Day party at work. Faith normally doesn't stay at school on Thursday afternoons so we decided to give her the choice of whether or not she wanted to stay for the class party.

I was a little disappointed when she said she didn't want to stay for it because I don't like her to miss out on doing fun things with her classmates. I do think though that the parties can get a little chaotic (especially with all that sugar intake) and I know it's hard for her to relax in that kind of atmosphere because her startle is constantly kicking in. Still, after dropping her off at school I couldn't help but feel a little sad that she was going to miss out on the party.

We did have fun making the boxes and cards and looking at all our Valentines together this evening after I got home. While she can't eat much of the candy she received, I know she likes the little valentines and she feels good knowing her classmates included her even though she didn't go to the party.
Faith with her Valentine box - made from a real Bruno's Pizza box that they gave us for free!
Our Valentines cards
My Valentine box won third place at work for most creative! I felt like I was in elementary school all over again!
And by the way, in case you're wondering - Rob and I don't usually get anything for Valentines Day because both of our birthdays are this month. We figure we do enough for each other on our birthday! You can read more about that in my HubPages article, Our Valentines Day Tradition.

Also, feel free to check out my other blog, Having Faith. I recently wrote an article about discovering and pursuing your passions in life.

Happy Valentines Day - it's a great day to be reminded of God's love for us!

Tuesday, February 5, 2013

The Liebster Award

I have recently connected with another blogger who is the mom of a sweet boy with special needs named Silas. You can check out her blog at A Boy Named Silas. She is truly an amazing mom and I just ordered her book which is an account of the time they spent in the NICU with Silas. She just nominated me for The Liebster Award - Special Needs Edition. Thanks, Alana Terry! I was very surprised, humbled and honored all at the same time.

The Liebster award comes with certain rules, one of which is sharing 11 facts about myself:

1. I took piano lessons for eight years
2. I would love to have two Doberman Pinschers someday
3. I work for a health insurance company
4. I have only colored my hair once in my life
5. I’ve never had a massage (by a professional)
6. My all-time favorite movie is still Footloose
7. I’ve had a pacemaker since the age of 25
8. Along with my journalism degree, I also have minors in speech communications and animal and range sciences
9. I can drive a 5-speed and prefer driving a stick to an automatic
10. I successfully gave up drinking caffeine
11. I was born on an Indian reservation in Wolf Point, Montana. We lived in Luster at the time where my dad worked as a ranch-hand.

I was asked 11 questions by the blogger who nominated me for the award and here are those questions and answer: 

1. Think of the day your child received her diagnosis. What is the first word that comes to mind?

2. Who is your favorite doctor, specialist, or therapist for your child and why? 

Faith has had so many wonderful people working with her, so this is a hard question. I would have to say though it would be her pediatrician, Dr. Ocejo who oversaw Faith’s care in the NICU. He and Faith have a very strong bond and when she is sick she looks forward going to the doctor because she knows she is going to see him. They spend the first 10 minutes of the appointment talking and laughing with each other (no matter how bad she feels, she always has a smile for him). He always takes extra time with us and even if our appointment is at 4:30 and he is supposed to be done at 5 o’clock, he stays afterwards just to make sure all of our questions are answered.

3. What symptom of your child's disability breaks your heart the most?

There are a few of them that are pretty heartbreaking but the one that tops the list is her inability to go to the bathroom on her own and still being in diapers. There are times at school that she accidentally wets through her pants and she has to leave in the middle of what she is doing and get changed. It’s not lost on the other kids what is going on and I think she is very embarrassed when this happens. Her inability to read is also very heartbreaking.

4. What symptom of your child's disability is actually somewhat endearing? 

When she tries to get a teddy graham out of the bowl all by herself and ends up dumping teddy grahams everywhere. At least she’s trying!
5. What is something your child is REALLY good at? 

She has really good memorization skills. When we read her a story, she wants to have it read to her over and over again until she has it memorized. Then, we’ll ask her to recite it and she’ll tell the whole story word for word on her own (without even looking at the pictures.) The first book she memorized was an Amelia Bedelia book.

6. In three words, describe how you have changed after becoming a special-needs parent. 

Having more faith.

7. How has having a special-needs child impacted your spiritual life? 

I am working on a blog post on this exact question. Being a special-needs parent is making me aware of the Christ-like qualities that God wants to instill in me – many of these qualities centering around being a servant. My prayer life has certainly increased as well as I have prayed for Faith more than anyone I have ever prayed for in my life.

8. Would you take away your child's disability if you could? Why or why not? 

Yes, I would take it away in an instant. I want her to be completely well and whole and I know God wants that for her too. I believe that sickness and disease comes from the enemy and one of the benefits of being a Christian is to have healing from sickness and disease. (Psalm 103).

9. What is the most disrespectful thing anyone has ever said to you or your child? 

Thankfully, we have not had anyone (that I know of) say anything disrespectful to or about Faith. What bothers me is when people, especially other kids, blatantly stare at her. This is unnerving to me, even though I know they are probably just curious.

10. "One thing I wish more people realized about my child is ..." 

that she just wants what every other child wants – to feel loved, appreciated, secure, confident, protected and supported.
11. If you were to articulate all the wishes you have for your child, what would they be?

My wish for my child is that no matter what her struggles or challenges she faces on a day-to-day basis is that she knows in her heart how much she is loved, accepted and cherished by her family, friends, caretakers and most of all by Jesus. 

And now 11 questions I would like to ask 11 other nominees who have a special needs child: 

1. What has been your best resource as a special-needs parent?
2. How did your extended family react to the news of your child’s diagnosis?
3. Is there anything you wished you knew now that you didn’t know in the early stages of your child’s diagnosis?
4. What prayers do you feel God has answered for your child?
5. How do you REALLY feel about being a special-needs parent?
6. What or who has been your biggest source of support/encouragement?
7. What do you do for fun?
8. How has being a special-needs parent affected your marriage (or other significant relationships?)
9. What hopes do you have for your child’s future?
10. What is something you wish your child can do that he/she can’t do?
11. What is something good that has come out of having a child with special needs?

Rules of the Liebster Award: The Liebster Award is designed specifically for small blogs (less than 200 followers) and is a fun way to get to know other bloggers. First you post 11 random facts about yourself. Then you answer then 11 questions your nominator asked you. Then you nominate 11 other people and ask them 11 new questions. In your response, you make sure to personally thank (and link) the person who nominated you. Also, be sure to insert the pink Liebster Award image somewhere in your post!

I would like to nominate the 11 following blogs/bloggers for the Liebster Award. If you participate in the Liebster Award, please leave a link in my comments section for this post. I would love to know more about you!