Reflections Around the 16th Birthday

First off, it's been months since I have posted. I do write each month for Key Ministry, and that's often all I have time to write for lately. (Here's a post from January on their site if you missed it.) I do like to write when I am inspired or have something on mind. Lately, my thoughts have been centered around an upcoming milestone.

My daughter with Down syndrome will be turning 16 years old in a few weeks. I truly do not know where all this time has gone. I have a hard time accepting that Jaycee is getting older and not my "baby" anymore. She is closer to the age of adulthood than childhood. At the same time, her disability has her functioning at a much younger age. 

Jaycee needs light help with activities of daily living (i.e., showering, wiping, cutting up food). She still likes to watch Cocomelon and other shows geared toward young children. There is this strange dichotomy between her age and developmental level. There is a balance in seeing her grow up while acknowledging that she isn't like others her same age. At times, this difference is front and center. 

In the past year, I have scrolled through pictures and posts on Facebook featuring some of Jaycee's previous regular education peers. I have seen celebrations of getting a driver's permit and license. My sweet daughter is struggling to remember that a nickel is 5 cents and to read a simple sentence, so a driver's license is not even close to being a reality for her. I have also seen pictures of peers at school dances in fancy dresses. I made the choice to send Jaycee to a school that does not offer these opportunities. It's really not a big deal in the long run. For a moment, however, I consider 'what might have been' for my daughter. Her life, and mine, would be much different in an alternative reality where that extra chromosome was not present. 

I wonder what kind of teenager she would be like had things been different. Would she be interested in boys? Would Jaycee be athletic and part of school teams? Would she be a socialite or prefer to stay home? What kind of vehicle would she want to drive? Would she slam her door in my face in a heated exchange or roll her eyes at me? Would she want to spend time with me? 

I picture her wearing the pinkest dress she can find to school dances. Would she still like pink in this alternative reality? I picture her dancing without any reservations much like she does now surrounded by a group of friends. I imagine that on her birthday she would take her used compact car to the driver's license facility. She would be a ball of nerves, but she would pass her test. Later that day, she would take her first solo trip in her car while I sat in my living room tearfully thinking about how grownup she is. 

For some reason, this birthday has made my mind dream and reflect a little. That doesn't mean I am unhappy about our lives-simply curious. After all, our family is on a much different path than most.

This birthday still signifies much for us. We are using this age of 16 to recognize her growth and track towards as much independence as possible. In the last few weeks, we have made changes to her bedroom. The Beauty and the Beast wall stickers have been peeled off. When the live action version of that movie came out, Jaycee watched it at least 100 times. She absolutely loved the characters and songs. It's not her favorite show anymore, so her decor centered around the movie is being replaced with more teen friendly items. 

The big hair bows that she insisted on wearing at one time have been packed away too. She hasn't been wanting to wear them recently, and they are designed for young children. Now is a good time for them to part ways. 

There are other things that are being replaced or removed. So far Jaycee has not really cared about the changes, which probably means she was ready for them. 

As we talk about her upcoming birthday, she tells me she wants a "pink party dress." When looking at pictures of cakes, she gravitated toward layered cakes, mostly with pink hues and flower accents. She wants her cousins to help her celebrate her birthday. Jaycee is still a bit confused on when her actual birth date is, but we will make sure she does not miss it. 

Despite everything I have wrestled with lately, I have no doubt that Jaycee's birthday will be joyful. After all, this girl has survived two heart ablations, two open heart surgeries, and a dozen or so bouts of pneumonia. I prayed so many prayers to God that Jaycee would live through one health scare after another. There were days that I never thought we would see her turn 16 years old. So, her birthday- her life is cause to celebrate. We plan on celebrating with genuine smiles in a few weeks. I just hope to fine a pink party dress for her. 

The Other Health Issue Happening Now

I need to tell you a story. It’s one that I don’t want to share necessarily, but it’s time.

I’ve struggled with anxiety for years. If you have lived through the events I have as a parent of a child with special and medical needs, you would understand how it all came about. I’ll give you a snippet of our journey and explain why it’s relevant for today.

My 15-year-old with Down syndrome, twice repaired AV canal heart defect, and Wolff-Parkinson White syndrome (twice ablated) struggled for years with her health. I remember the first time Jaycee was hospitalized for pneumonia when she was 1. I didn’t understand the different levels of respiratory support and how the hospital system worked. Within a few years, I would gain a full education. I would come to know the stats for heart rate and oxygen saturation that would result in a hospital admission. I discovered when a nasal cannula, high-flow oxygen, c-pap, and ventilator would all be needed as the lungs worsened.

For years, respiratory viruses ruthlessly attacked my daughter’s body. A simple cold virus (rhinovirus) escalated to Jaycee needing a ventilator not once but twice. Have you seen someone on a ventilator? The sounds and alarms from it are jarring. The sound of her coughing and being suctioned was something I wish I could erase from my memory. Spending weeks in the hospital not knowing what the next hour would bring was stress I cannot adequately explain.

Respiratory event after respiratory event with Jaycee caused problems for me. I was stressed to the max. Anxiety over her health, fear of her being sick, and exhaustion of her care changed me in an unexpected way. Keeping her healthy consumed my life. For example, there were a few times in church when the person behind us would cough and my mind would race. I viewed circumstances like that as a real threat to my daughter’s health. My mind would supply me with a hundred ways in which an encounter like that would be detrimental for Jaycee. Keeping her healthy affected all of our decisions and was at the forefront of everything we did. Despite our best efforts, she struggled with normal colds and viruses. Every illness exacerbated the anxiety I felt. I took it upon myself to somehow keep her healthy. It was an impossible feat given the condition of her lungs. 

Do you know what years of ignored anxiety does to a person? I know what it did to me. I became anxious all the time. Literally all the time. I never had peace. Even when there was a reprieve from the illnesses, my mind would keep me in a state of anxiousness. I had lived with high stress and adrenalin for so long that I struggled to cope in “normal” life. I was jumpy too. If a family member entered a room I was in, I would jump like someone had intentionally tried to scare me. At one point, my body tensed up to the point that my left arm became numb. Muscle aches, jaw clenching, teeth grinding, and exhaustion were all normal to me. It was only through medication and counseling that I was able to get some control of the situation.

For the past 2 years, Jaycee has been exceptionally healthy thanks to Mayo Clinic giving her a successful treatment plan for her lung conditions previously not identified. These two years without illnesses requiring the hospital have been wonderful. Still, the anxiousness and stress have not gone away. My mind was trained to live that way for years, and I have to make a conscious effort to keep those things at bay even now. I find things to stress about when there is absolutely nothing stressful. Intrusive thoughts create stress for me, and I have to work hard to identify them to decrease the anxiety. I always thought if Jaycee’s health would be better, my mental health would be better. It wasn’t that easy. I had created a monster in my mind and didn’t know I had no control of it.

So you have to understand that this pandemic has caused me distress at times. When the virus first hit and the lockdown started, I was terrified of COVID-19. I had people in my life telling me to fear it because Jaycee would be detrimentally affected by it. Fear was easy to find all around me, and it was fuel for my anxiety. In the beginning, I stayed home and dreaded leaving my house. I worked from home during that time, so I only left for food or medicine. Each time I left the house, I was anxious. My heart would race just being out and near people. Seeing people in gloves and masks pouring out sanitizer every five seconds made me more anxious. (People did a lot of strange stuff in public during those first few months.) The logical part of my brain could not compete with the anxiety that already had a strong root in my life. Worse yet, I was surely projecting anxiety onto my kids since they were typically with me.

At first, my solution to decrease the anxiety was to send my husband, who was home full time as well. He reported he had no qualms about going out in public. Even though we have had the same history with my daughter, he never had the anxiety issues I did.

Little by little, I rejoined society mainly because being home all the time was horrible for me. For a while, I had anxiety every time I left the house. I didn’t want to get the virus. I didn’t want to make a mistake that would affect my daughter. Being around too many people would truly distress me. After church one Sunday, I asked my husband if he enjoyed the service because I did not. I could not get past the fact that I was in a group of people. The fear and anxiety were constantly eating at me. My husband said he was fine. Two people sitting side by side in a church and experiencing two different things. One struggles with anxiety, and one does not.

At this point, I had to decide what to do. I could allow the anxiety to rule my life and control what I did. The other option would be to push myself to have a life outside the house while taking some precautions. The reality was that my husband and I need to work. We couldn’t stay locked in our homes forever. For me, the more I carried on with normal life activities, the better I did. You cannot live your life being controlled by fear, especially as a person of faith.

I guess I should take a moment to declare that I do believe the virus is real and can be life-threatening for some. However, I also feel fear is heavily pushed upon us on the news and social media, and that level of fear is not healthy for people with my history. The longer the virus lingered, I assumed at some point we would have a run in with it.

In January, that moment occurred. My husband and both children were positive for the virus. We aren’t sure where we got it, and it doesn't matter anyway. I was incredibly stressed when Jaycee tested positive. A few months prior, two of my close family members were in the hospital with COVID-19, so of course that was on my mind. I don’t think I slept much for about a week as I felt the need to check on her often. We intervened quickly for Jaycee, and we were blessed that she came through it relatively easily. The really odd thing was that I never got the virus. I tested negative twice and later had a negative antibody test. I didn’t avoid my family at all, so the mystery of how this virus acts continues. I ended up getting the vaccine so I had some level of protection to be on par with my family.

After my family recovered, we made a list of things we wanted to do now that the virus wasn’t an immediate factor. We all had a certain level of immunity, and we were going to take advantage of it. We looked forward to the activities on the list. We all needed to feel normalcy. We didn’t throw caution to the wind, but some people may say that we did. The intense level of anxiety that stemmed from trying to avoid a germ no one can see was no longer there, and it felt great. I hadn’t realized the toll it had taken on me until that burden was removed.  

I know this post will bring out lots of opinions, but I want to stress one point. Don’t play with anxiety. If avoiding the virus at all costs is giving you stress and anxiety, it is not healthy. You are accepting one illness for another. You may think that you will be able to go back to normal patterns of thinking when this is all over (if it ever is), and I want to warn you that it may not happen.

It’s important to recognize the impact stress and anxiety may be having in your life. I’ve described what happened to me, but the symptoms for you may be different. You may want to look at common signs of anxiety. This article on anxiety related to COVID-19 is a good read too.

God Speaks-Special Needs Edition: Part 2

Welcome to part 2 of a series highlighting how God speaks to people. As a Christian mother raising a child with special and medical needs, I have to hear God's voice. I have to know his heart for me and my child.

I understand God wants to have relationship with people. He wants to speak to those he has created. The Bible tells us how God has spoken to people in the past. It also provides insight into how God communicates to people today. There are numerous examples to look at in the Bible. In part one, I shared about previous experiences with God speaking to me through dreams. In this post, I'll share some ways that God used other people to speak to me. 

Photo by Min An from Pexels

There are many examples in the Bible of God using the interactions between two people to accomplish something great. Eli told Hannah that God would grant her request (1 Samuel 1). He didn't even know what she was praying about, but those words eased her out of sorrow. God did grant her request just as Eli proclaimed. David and Jonathan were friends who worked together to take care of each other and encourage one another (1 Samuel 20). Paul's writings in the New Testament show how he communicated with other believers to help their relationship with God. Several prophets in the Bible spoke messages from God to people to encourage, warn, or direct them (i.e. Nathan in 2 Samuel, Elijah in 1 Kings, Jeremiah, Isaiah). 

For me, it has been imperative to have relationships with other Christians who can speak into my life from the depth of their knowledge about God. I do not have a long list of friends, but the Christian friends I do have know how to pray and speak words of encouragement. I don't know how many times I have been caring for Jaycee at home or in the hospital, and I get a phone call or text message at just the right moment. Sometimes, the text contains scriptures that relate to the situation, and sometimes it's just their own inspired words. Similarly, I have listened to a Christian podcast or a sermon at the perfect time to allow God to speak into my life regarding a situation with my child. 

A few specific examples

In July 2006, Jaycee was 4 months old. She was on oxygen from her first open heart surgery. At the time, I was a youth minister leading a church camp for our kids. The kids at the church knew some of Jaycee's health issues and had watched me take care of Jaycee during camp. During one of the evening services, several kids' hearts broke for Jaycee, and they wanted to pray for her. I brought Jaycee to the altar for them to pray. A sweet girl looked at me with tears in her eyes and said, "Just because she's sick doesn't mean God doesn't love her." 

You may think that statement was juvenile, but it meant the world to me. I was in the 4th month of struggling to process all of Jaycee's diagnoses and sudden turn of events. The shock of her diagnoses was the first real testing of my faith. That girl's words of revelation spoken aloud was exactly what I needed to hear. My daughter's health was not a barometer of God's love. 

In 2015, I was exhausted with Jaycee's medical scares and breathing issues/hospital admissions. Nights were horrible for me. I had several bad dreams, some of which were about the hospital. My body would become so tense during these dreams. By morning, I would wake up with parts of my body hurting so badly from being held tight all night. 

I decided I needed to have someone at church pray with me. That person shared with me ways to pray over myself. She encouraged me not to let these dreams become an open door for fear to breed. She also said, "Your body hasn't caught up with your spirit yet." That was a revelation for me. I hadn't thought about my spirit and body not synching up at the same time. 

Another time in 2015, I had someone pray for me after a serious ICU stay with Jaycee. I didn't know the person on the ministry team praying for me. She told me that I had an easy laugh. It was true. I laugh very easily. I tend to laugh when I am nervous, sad, upset, and happy. My husband and I try to find humor in all of our crazy situations -probably a coping mechanism. The ministry person said, "Laughter is your weapon. The devil thinks you have nothing to laugh about. Your laughter confuses him." I loved hearing this perspective, and I saw my laughter so differently after that interaction. It was even more meaningful because the Lord had clearly revealed that piece about my life to her. 

A dozen times, I have had people tell me that God considers me a strong person. They all add that I may not see myself as strong, but God does. This repeated message is just another sign that God is moving others to encourage me and build me up. 

Over and over again, God has used other people to speak to me. There are more examples than this, but I wanted to highlight just a few. I am grateful for those people who have felt God's nudging and were obedient to his voice. 

There is more coming to this series. Please check back for part 3. 

God Speaks-Special Needs Edition: Part 1

If you aren't familiar with the Christian faith, this post may seem a bit odd. In fact, this whole series I plan to write will probably feel very strange. Stay with me, and I will try to guide you through this very complicated and simplistic topic of how God speaks to people.

God is real and active today. As a Christian, I understand God wants to have relationship with people. He wants to speak to those he has created. The Bible tells how God spoke to people in the past. It also provides insight into how God communicates to people even today. There are numerous examples to look at in the Bible. Today's post will look at God speaking specifically through dreams. As this series goes along, we will look at other ways God speaks as I give examples from my own life. 

Let's start with this passage in Job that shares that God speaks to us.  

For God speaks again and again,

    though people do not recognize it.
15 He speaks in dreams, in visions of the night,
    when deep sleep falls on people
    as they lie in their beds.
16 He whispers in their ears
    and terrifies them with warnings.
17 He makes them turn from doing wrong;
    he keeps them from pride.
18 He protects them from the grave,
    from crossing over the river of death.

Job 33:14-18 NLT

God can speak to us through our dreams. Sometimes, the dreams are given as a warning or to prepare us for the future. In Genesis 40, Joseph interprets Pharaoh's dreams, which ended up predicting the future and giving wisdom for how to deal with an upcoming famine. Dreams can send other messages too. Jacob had a dream about angels on a stairway and received a word of promise from God. (Genesis 28) Joseph received instruction on where to go with his wife and baby Jesus in dreams more than once (Matthew 2). There are other examples in the Bible of God speaking through dreams. 

Photo by Ketut Subiyanto from Pexels

And God Speaks: Dreams

I have experienced dreams from God many times. I dream regularly at night. My husband claims he rarely has dreams. Neither of us can quite relate to the other's experience. Though I often dream at night, only once in a while do I recognize a dream as being from God. My husband has asked me how I can tell the difference between regular dreams and Godly dreams. For me, it's an easy thing to distinguish. 

The dreams I receive from God are very vivid. There's a difference in the way they "feel." The most distinguishing factor though is the amount of the dream I can recall when I wake up. A dream from God sticks with me. I wake up thinking about it and remembering almost all of it. I want to meditate on the dream. Sometimes parts of the dream are repeated, which is a clear sign it's from God. It's pretty easy for me to recognize a God dream now, especially because I have had so many in the past. 

Once I feel like I have a dream from God, I start looking for the meaning. Sometimes, the meaning is simple and the message clear. Other times, I have to sift through layers of the dream and seek the meaning in prayer. I have a Christian symbols book that I sometimes consult when deciphering the dreams. The book has helped in some cases and brought confusion in others. I use the book as a reference and not the final authority. Sometimes, I share the dream with other Christians (like my father) and see what they think the interpretation is. In the past few years, I have found I often get the answer when I sit down and write out the dream with as much detail as I can. Usually after that, the answer comes without really trying. I don't know why that works, but it does for me. 

Some of the dreams I receive are short. Others are long. Some are bizarre, and others beautifully crafted. Since becoming a parent to a child with special and medical needs, I have had dozens of dreams from God. Today, I am sharing a few with you as well as my interpretation of the dream. 

The Twins, Sept. 2008

The dream: I gave birth to twins (a boy and a girl). They needed to be in the hospital for a few weeks, but I wouldn't go and see them. The doctors asked that me and all of our family come to the hospital to do a trial day of taking care of them. Their beds were going to be in the waiting room. The dream ends with me never seeing either of them. 

My interpretation: Ten days prior to this dream, I had suffered a miscarriage. I was already a mother to Jaycee at the time, and we were trying for our second child. I had many reservations about having a second baby. Jaycee's Down syndrome, congestive heart failure, and 2 open heart surgeries had made me fearful of having a second child. When the second pregnancy abruptly ended, I felt more fearful and confused. Nothing about motherhood seemed easy for me. 

To me, this dream was a message from God about what had just happened and what was going to happen. One baby was with God now, and I have to wait for our reunion in heaven to meet her/him. The second baby was coming one day, and I was in the state of waiting for that baby. The doctor represented God as my healer and was telling me to move forward. Babies are also a sign of a new beginning. This dream was a full confirmation that I shouldn't be afraid to try again. 

A House Nearly Destroyed, June 2019

The dream: I was leaving our house to pick up some food. I started to get into my vehicle to leave when I heard a loud sound. I looked up and in the distance there was a wooded area. One by one, I watched as the trees were falling down. The noise was ferocious, and it scared me. I thought an earthquake was occurring, and I was filled with anxiety. I raced back into the house yelling for my husband to warn him. I was panicking and trying to figure out what to do. My father, who was in the house, told me, "You tell it to stop." I started screaming, "Stop!" "Devil, you stop!" I screamed this as loud as I could while standing in the house. 

When I stopped screaming, one final tree finished falling, and the top of that tree came just inside an open window of the house. The destruction and loud noises all stopped. We walked around the house as I looked to see what was destroyed of ours. I was expecting to find severe damage. As we tour the house, the only damage was superficial and cosmetic. 

My interpretation: This dream occurred following weeks of stress. Jaycee had been having breathing issues for several weeks that required lots of monitoring and interventions from me. She was admitted into the hospital briefly before finally getting better. This dream was a direct message for me and how I respond to those health scares. I tend to panic and be frightened during Jaycee's illnesses. I am always worried that Jaycee's life is going to end in one of these illnesses (i.e. the part of the dream where I expect severe damage). In fact, some destructive things happen to Jaycee and our family as a result but our foundation is secure and safe. My father in the dream represented God. He was telling me to use the authority that God has given me. I don't need to call on others to pray or intercede for Jaycee. I can do it; I just need to speak and quit panicking. Fun fact: May 2019 (just before this dream) was the last time Jaycee was admitted to the hospital as of the writing of this. Praises!

A Heart Issue, Nov. 2020

This was an odd night where I had 3 different dreams. 

Dream 1: My son Elijah is in a hospital bed located in a gymnasium. He's going to die of a heart problem. Knowing this, I ask the only other person in the room if I can call other people to be with us. The man warns me, "If you call someone, make sure they can make the right decision when the time comes." I call no one. Elijah's heart stops on the monitor. I put my hand on his chest, and he revives immediately. I hold him in my arms knowing that he is going to die. Elijah looks very sick and has his eyes focused on me, playing with my hair as he slips off. I am sad for Elijah. 

I wake up very alarmed with this dream. It took me quite awhile to get back to sleep. When I did, the next dreams happened. 

Dream 2 & 3: I'm in a nursing home. My grandma (who had recently passed away in real life) was near death in the hospital bed. She falls out of the bed, and my daughter Jaycee climbs in it. Jaycee is going to die of a heart problem, but we are both at peace. I never touch her or react. 

Suddenly, I'm at work doing a speech therapy home visit. A toddler crawls into the room. He is deformed and very sickly. I scoop him up in my arms and try to comfort him. My co-worker and I try to figure out who this child is and who he belongs to. We eventually find his mother and start trying to talk to her about him. She gives us no attention and walks away. She knows her child will die of a heart problem and doesn't want to hear any hope we have to tell her. 

My interpretation: I struggled at first to understand this night of dreams. After the first dream, I was immediately worried for Elijah. I thought it was a literal warning for his health. Whenever I woke up from that first dream, I started praying for Elijah. I struggled to go back to sleep because I was so upset from the dream. It scared me. I drifted off back to sleep and had the last two parts of the dream. When I woke up that morning, I knew they were all related but was unsure of the meaning. By the end of the day, I felt I had the message. 

All 3 dreams featured a serious condition that was life and death. My reaction in the dreams was the focus. In the first dream, I saw success in ministering to my son (his heart revived) but it's short lived. I resigned to the fact that he would die. My first action (touching his chest) produced a positive change. However, my next action was to hold him and do nothing. This is an issue I've had in the past with situations with Jaycee. I'm full of faith and encouraged when a challenging issue turns around. But, if I'm challenged again too quickly, my faith is low, and I'm drained. The warning the man gave in the first dream was interesting and probably good advice. 

In the second dream, my emotions are better in that I have peace. My emotions don't dictate what I do. However, I don't do anything. I never use my faith or touch her. In the last part of the dream, I'm in my regular work setting with a co-worker, which makes me think I found someone to co-labor with (possibly a reference to the man's warning in the first dream). I take action in this dream. I don't get depressed or sad. I feel the urgency to do something. I hold this toddler the same way I held Elijah in the first dream, but this time I do it with a different posture. I seek the mother but I don't share with her about God's power to change the situation. 

The three dreams show growth in my actions and reactions. It also seems to indicate that I am ready to go beyond helping my family to ministering to other people. The dream is a reminder to use my faith, not be too emotional in situations, and to take action!

Parting thoughts

It is my hope in sharing these dreams with you that you can recognize God's attempts to speak through dreams. The scripture I shared in Job says that God speaks but people fail to recognize it. It's easy to blow off dreams and disregard some as simply strange. Other people may tell you the dreams mean nothing too. I hope that by sharing my experiences, you can learn how to apply this in your own life. 

Stay tuned for part 2 in this series! 

One Word for 2021

At the beginning of a year, I often make goals or settle on a word to focus on in the coming months. In 2019, I felt God leading me to focus on the word "ASK." I wrote a post all about this word and what it meant to me. Essentially, I focused on "ask" because I had come to realize that my prayers weren't very deep. I had stopped asking God for things that actually required some faith. 

In 2019, I started asking God for more and stretching my faith. It had an amazing result and was the perfect word for me. 

This year, I really didn't have a word to focus on. I had some things I wanted to pray about and goals to achieve. Some of these included: keeping my weight off, praying for Jaycee to stay healthy, embracing turning 40 this year, and taking a family vacation. Thankfully, our family vacation was in February so we got to enjoy it! Keeping my weight off proved difficult in quarantine, but I kept the majority of my weight off. 

I don't have to begin to explain 2020 to any of you. It was challenging for a dozen reasons. I think "survival" was my word looking back- just kidding. I did learn much about myself in the chaos of 2020, and hopefully I will grow from it. I feel more prepared for challenges that I foresee coming in 2021. 

In 2021, I have one word that I will be using to guide me through the year. When Sandra Peoples, an author, speaker, and leader in the special-needs/Christian world, asked if anyone wanted to participate in an online conference and share their one word for 2021, I knew I had something to share. 

I will be one of 21 different people sharing their one word for the upcoming year. The conference is geared towards moms of children with special needs. However, many more people would benefit from the wisdom and truths that will be shared. 

The cost for the conference is $15, and you will have access to all the videos during the conference December 28- January1st. You can save $3 by entering my name in the promo code box! 

I hope you consider "attending" the online conference, setting yourself in a position to receive from God, and be encouraged to start 2021 off right! 

To sign up for the conference, CLICK HERE! Remember to use the promo code: Evana

Being Thankful, Even in All of This

This year, right?

I mean, this year has been a humdinger! Who would have predicted any of the craziness happening in the world right now? Eight months into this pandemic, I still cannot believe I am wearing a mask into a store to go grocery shopping. 

Nothing could have prepared me for the major changes in life this year. Change-there's a word I despise. I do not like change. I love routines and schedules, and I passed this trait down to my children. I remember when Elijah was in preschool and he asked me why I had called him to the dinner table at 4:58 and not 5:00. 

As a person who loves routine, 2020 has been challenging. My job suddenly shut down in March, which was a major change for me. Not to mention too that my income was less than I anticipated for months. Then, I was thrown into providing speech therapy via telehealth, something I never envisioned myself doing. Learning the rules and tricks to do telehealth was a huge change for me. On the other hand, going back to seeing children face-to-face for my sessions was a change I wholeheartedly welcomed. 

My husband faced changes too. He was expecting to spend most of the year working in Louisiana full time. He was sent home in April and never returned to the jobsite. He found other short term jobs to carry us through, but his work has not rebounded yet. Fortunately, he accepts change better than I. 

Of course, we have the other issues commonly faced this year. There have been mundane ones like finding toilet paper, figuring out what to do with our spare time at home, and completing school assignments with the children. Bigger problems have been figuring out health insurance options, budgeting with changing incomes, and extended family members testing positive for the virus. 

As we get closer to Thanksgiving, I can't help but reflect back on the things we have overcome this year, both big and small. In spite of everything, I have much to be thankful for. 

First and foremost, I am grateful for my daughter's good health. Jaycee is weeks away from an 18 month hospital-free streak. That's 18 months she hasn't been admitted to the hospital, fighting for breath, and giving us all a scare. Her treatment that Mayo Clinic started in May 2019 is still working wonders. In this time when there's much concern about germs, I am thankful for her health. 

My daughter has made other great achievements this year. Her writing has made vast improvements. She can write all of our names and other short words legibly- sometimes from memory! A few years ago, I decided that Jaycee may never write, and that was fine. I hadn't given up but just accepted the fact that it may not happen. Her progress in writing was a surprise. Her speech has made improvements as well. She is talking more and more. One day this week, she didn't want to go to school. She clearly said, "I don't want to," as my husband literally lifted her from the passenger seat. My son and I chuckled in disbelief over what she said. Progress is wonderful, and I'm thankful for every new skill!

When I did return to work (under a much different set of rules and circumstances) for a few months, I was grateful. When my job was pulled from my routine, I missed it. I find much satisfaction in helping families and their children. Seeing a child take their first steps or hearing a child's first words is really something magical. I never tire of these milestone achievements and cheer along side of the parents. My work is important, and I have never been so grateful to do something as simple as get up and go to my job. I won't be taking that for granted any time soon. 

There are other things I won't take for granted in the near future. Sending my children off to attend school in person is such a blessing these days. I'm grateful for the teachers, therapists, and staff working together to pull off school. I'm thankful when I can go inside a store and find everything on my grocery list. There were many shopping trips this year when it was hard to find everything. 

These and 100 other things are reasons I will be joyful on Thanksgiving. There are many adjectives that can be used to describe this year. For me, this year has given me the gift of perspective. The changes that happened during this year taught me much about myself. Some things were good, and some revelations were not. I am far from perfect; this year has taught me that like no other. I haven't liked everything that has happened in 2020. However, I can choose to be thankful this Thanksgiving. (Did I mention that my job is shut down suddenly again?) Even in all the changes, I can be thankful. 

Buying Christmas Gifts for the Child with Little Speech

My daughter adores Christmas. She loves to help decorate the tree, make sugar cookies, and watch light shows in our area. Jaycee enjoys the occasional Santa spotting as well. Even though her speech is limited, she and Santa can share a hug that means more than 100 words.

Jaycee, who is our 13 year old sweetie with Down syndrome, looks forward to our Christmas gatherings with family. When she was little, she didn't have much interest in the present portion of the night. She often opened up a gift or two and was satisfied with what she received. I recall one year that Jaycee unwrapped a DVD. She was so excited! She went in the other room to watch it rather than opening up the pile of gifts that remained from grandma. Her attitude of contentment and appreciation was something we should all replicate. She eventually opened up the rest of the gifts after enjoying her movie.

Jaycee now unwraps presents until there are none left to open. The hard part has been figuring out what to put in those boxes. To her credit, Jaycee doesn't care much about what is in the present. She smiles and receives anything with love. She never dislikes anything. In that respect, Jaycee is easy to please. Of course, I want Jaycee to like her gifts, but it is almost impossible for Jaycee to let me know what she wants.

"What would you like for Christmas?" I ask Jaycee in hopes she will give an answer.

She replies with speech and sign language, "Christmas tree." I don't think she wants a tree. I think she is associating my question with the tree where the presents go.

Other times, she answers my question with, "Presents."

She isn't verbally able to answer the question that so many parents ask this time of year. My 10 year-old son, on the other hand, is able to give a long wish list and often pulls up the desired item on Amazon.

What is a mom to do for a child who can't say what they desire? I want her Christmas to be special, but I also know it's not that important to her. I try not to stress about her gifts, and simply go with what I know. 

There are some things I have found helpful over the years. Here are my three tips for buying gifts for the child who can't express what they want.

1. If public outings are an option, take the child shopping. 
As Jaycee has gotten older, it has been helpful to take her to a store to see what interests her in the toy, movie, and clothing aisles. For years, Jaycee only choose items in the store that she already had at home. She gravitated toward the familiar, so shopping wasn't helpful.

Now, she can pick out things she likes, which makes it easier for all of us. Generally, she chooses toys or items with familiar characters, but sometimes she surprises me. This year, she has chosen an Elsa doll and a Lion King shirt on our shopping trips.

2. Consider what the child watches. 
Jaycee had favorite movies and television shows starting at age two. We purchased movies and items for her based on shows she already liked. When Barney the dinosaur was a favorite, I bought a stuffed Barney, for example. 

Last year, I took this same principle and applied it to YouTube. Jaycee loves watching a plethora of YouTube videos. In particular, she loved watching people open LOL surprise dolls and makeup tutorials. I don't wear makeup, so this was completely her interest. For gifts, we decided to buy her the LOL dolls and makeup because she had neither. Jaycee loved them both. Jaycee has added to her makeup collection over the whole year, and it has been fun to see a new interest develop. It all started because of YouTube.

3. Décor for the win. 
Over the years, when I have struggled to find a gift, I purchased something for Jaycee's room. It is money well spent because she spends a good deal of time in her room. We have purchased a new dresser, a large Beauty and the Beast wall sticker, Beauty and the Beast bed sheets, and Disney wall hangings. It's something she can enjoy all year round. 

Christmas is a magical time of year. As parents, we want all of our children to enjoy the season and participate. Even if a child isn't able to verbalize what they want for Christmas, hopefully we can come up with ideas that they can enjoy. My best advice is this: Trust your instincts as a caregiver. You know your child best. I'm sure you will know how to make Christmas special for your child. Happy shopping! 

3 Keys for Public Outings: Special Needs Edition

The thought of a public outing can create all sorts of thoughts and feelings for moms of children with special needs. Even though it may be challenging, leaving the house is a necessity in life. Moms take their kids to the grocery store, doctor's appointments, playgrounds, and restaurants. These outings may take extra planning when your child has special needs.

I have parented a child with special and medical needs for 13 years. We have learned many lessons together in that time. I'm still learning on how to support my child in public outings even now.

Last week, I took my daughter, Jaycee, to a water park. She wanted to go there; it was her idea. A hot July day wasn't the best choice, but it was the only day my husband was off work. Before we left for the water park, I had a picture of how things would go. I didn't envision a perfect day, but I did expect to be there for 3 or 4 hours.

The first hour we were at the water park, things went well. We swam in the pool. The kids and I went down a water slide a couple of times. We floated around the lazy river. Jaycee splashed and laughed. My son, Elijah, was busy running from one area to another. Then, all of the fun suddenly stopped.

Jaycee walked from the lazy river to her next adventure at a snail's pace. Sensing something was wrong, I encouraged her to sit down and take a break. I offered her a cold drink, and she guzzled it. My husband and I took turns sitting with her for the next half hour. Seeing no progress was being made, we asked Jaycee if she wanted to go home. To which she responded with, "Yes!"

I wasn't ready to leave yet. We were only there for 1 1/2 hours, but 30 minutes of that was sitting with Jaycee in a chair.

As we left the water park, I was hit with a twinge of disappointment. I wish Jaycee didn't tire so easily. I wish the day could have been a little longer. I started to get worked up about the abrupt ending, and then I had to calm myself down. We did what we could. I had to be thankful that we had an hour of fun.

It got me thinking about how far we've come over the years. Jaycee has grown in her ability to handle different public situations. I have matured with my emotions and responses to my daughter. For that reason, I'm offering three keys to managing your child with special needs in public outings.

1. Lower your expectations. 
Lowering your expectations may sound like you are preparing for only bad outcomes. That's not the case. If you have a glowing idea of what may happen when you take your child with special needs somewhere for the first time, you may be disappointed and miss some positives that occurred.

When Jaycee was 5 years old, we decided to take her to the movie theater to watch "Winnie the Pooh." She loved Pooh bear and movies in general, so I thought it would go well. I pictured her sitting in the seat and being elated when her lovable, yellow bear appeared on the big screen. When the lights went down, Jaycee got scared and dropped to the floor. She sat there for the duration of the hour long movie. She never saw any of it. My son, who was only 2 at the time, laughed and watched in delight.

On subsequent visits to the theater, my goal for Jaycee was to sit in the seat for any amount of time. We didn't see movies often, so it took her 4 years to watch a movie from beginning to end. "Cinderella" was the first movie she watched, but she spent the previews sitting on the floor. Now, Jaycee sits in her seat the entire time holding her popcorn and soda like a champ. It didn't happen overnight. I had to have patience and not take her reactions personally, since I was the one planning our outings.

2. Respect your child's limitations.
When deciding on what public outings to attend with your child, you always want to consider your child's limitations. There are some things that I know will be hard for Jaycee. Any outdoor activity with heat means Jaycee's endurance will be short even now at age 13. When she was younger, I had to learn what bothered her, which was frequently discovered through trial and error.

When Jaycee was 3 years old, I took her to a Wiggles concert. She loved the Wiggles, and I was looking forward to a fun outing with my little girl. I purchased seats in the back, because I was unsure of how she would react. I fully expected her to be happy. When the lights went dark, Jaycee started crying. It was unusual for her to cry, and I couldn't calm her down. I tried pointing out Wags the dog and Greg Wiggle to help her recognize what was happening. I eventually had to leave and walk the hall with her. When she calmed down, she immediately fell asleep. My mom and I sat through a Wiggles concert; Jaycee woke up for the final few minutes.

The concert didn't go as planned, and I didn't try to go to another one for a long time. Dark, loud, and unfamiliar places confused Jaycee. For the most part, I tried to avoid these, because entertainment situations weren't that important. It wasn't worth her tears and confusion. She needed time to mature, and I respected her limitations.

Jaycee currently gets very stressed on days we have doctor's appointments. I know it's not a good idea to add anything fun before or after those appointments or she will understandably have behaviors. I respect those limits when possible.

Sometimes, you can't respect limitations because real life requires your child to cope. When Jaycee was growing up, I planned outings to restaurants and stores. Restaurants weren't too bad for Jaycee unless something inside was different, changing her routine. Stores were a real struggle. She wanted to run off and didn't understand dangers in parking lots. It took much mental effort for me to keep Jaycee safe. I couldn't avoid these situations because they were a regular part of life. While I understood that Jaycee struggled in these situations, I needed to push her to learn how to behave properly. On weekends when my husband was home, we intentionally went places to practice walking in a store, staying with a parent, and safely entering/exiting a vehicle. It took years (literally) of practice and patience for stores to be an enjoyable experience for both of us.

3. Celebrate the small victories. 
In all of the unexpected difficulties with your child, it's important to recognize and celebrate any victories. Your victories will probably be small steps in the right direction instead of huge accomplishments. It's important to reflect on how far your child has come and maintain your patience for what is still ahead.


I hope these three keys will help you gain a healthy perspective when taking your child in public outings. As a parent, we can't control our child's responses to different environments and situations. We can only help them through it, teach them when appropriate, and respect what they can't do right now.

A Special Hope

On Saturday, an interview I did with Sarah from a Special Hope Podcast went live. We had a great conversation about my life, parenting children with special needs, caring for a child who is medically complex, faith, and things that go wrong when shopping at Kroger. There were serious moments and funny ones.


You can listen to the podcast by clicking this link.

You can also do what I do and listen to it on your Apple iphone's podcast app. Search for "A Special Hope" and look for episode 9.



All of the show notes and additional podcast information are here.

15 Years Married: Part Survivor, Part Fear Factor, Part Reality Show

May 17th marked 15 years of marriage for my husband and I. (Go ahead and applaud if you want.)

The day we stood in a church to say our wedding vows, neither of us knew what life had in store for us. We had dreams and hopes for the future like anyone else. Most of these were ordinary ones- securing good jobs, owning a home, taking vacations, having children, and always getting along. We never pictured all the good and challenging things that would actually occur.

For the past 12 years of our marriage, we have navigated a world we never anticipated. When Jaycee was born and subsequently diagnosed with Down syndrome and a heart defect, we found ourselves in a new place in our lives individually and together. For 12 years, we have had to make difficult decisions about her medical care, therapy, and schooling. We've parented a child through surgeries, multiple hospital admissions, medical tests, and daily home medical interventions.

At times, I have felt like my husband and I have been on some strange combination of Survivor and Fear Factor. We've been in a hospital room for days and weeks at a time, sometimes in the Intensive Care Unit, wondering what her outcome would be. Her illnesses dictated our lives, and no matter how much we all wished to be home, we had to wait for her to get better. We have rushed her to the emergency room for true medical emergencies. We've seen her go through lots of scary tests, pokes, and interventions. We've genuinely worried for her life and future. It's challenged us emotionally, physically, and spiritually.

We've experienced cliff hanger moments in the hospital like you see on reality television shows. Sometimes, it was a doctor giving us a worst case scenario which thankfully never happened but caused great trepidation at the time. Other times, things projected to occur did-both bad and good.

I have jokingly told others before: "If you want to know what your marriage is made of, have your child hospitalized in the ICU. Have a doctor tell you some frightening things about your child. Feel an enourmous amount of stress and worry from everything happening. All the while, you are sleep deprived and coping in less than ideal living conditions (public showers, hospital food, little personal belongings). Then add in to the fact that you and your spouse are sharing a small hospital room with your child for most of a 24 hour period. You'll find out what your marriage is made!!"

I say that as a joke, but it is true. The hospital situations have brought out the best and worst in our relationship. We found out pretty quickly that stress contributes to some arguments and attitudes. We try to give ourselves grace in these situations and know that we both may say and do things under the strain and pressure of our situation. We know we both have the same end goals and that plan involves each other- even if we snap at each other after being up all night with our daughter in ICU.

Whatever contest you want to say that our marriage has won or survived, we know enough to celebrate the victory. Last year, we started dreaming of a trip for our 15 year anniversary. For our 10 year anniversary, we went back to the place where we honeymooned, Pigeon Forge in Tennessee. This time, we wanted to go some place new. With Jaycee's health issues, we decided to wait closer to our anniversary to plan the trip.

Then the illnesses started. She spent over a week in the hospital around Thanksgiving. Weeks later, she landed back in the hospital in January. She went home on oxygen at night and was still recovering when she went back into the hospital again in late January. She was sick the entire month of January either at the hospital or home. Things were a bit rough even into February, but then things started looking up.

In mid-April, we bravely purchased plane tickets to Niagara Falls and planned our trip just 4 weeks away. Then Jaycee went back to the hospital for a week. During the hospital stay, I wondered how long it would last and what sort of shape she would be in when we went home. I doubted the trip would happen. We can always reschedule, I told myself with a sigh. Thankfully, Jaycee made a quick recovery, so we could keep our plans. The kids went to my mom's for 4 nights while we were on our trip. Four nights may seem like a short trip, but we were grateful for any amount of time away.

On the trip, we had adult meals. I went outside my comfort zone and tried meat with chimichurri sauce. I'm not an adventurous eater. My husband was proud. We had some regular meals too like a good, well done cheeseburger.

Hanger Steak with Chimichurri Sauce...So fancy! 

We explored the Niagara Falls National Park and some visited other fun sites in the area. It was a beautiful place and a wonderful trip. We missed our kids, but we did FaceTime every night. The first night, Jaycee asked, "Mom work?" Nope, I'm on vacation girl! 

We loved every minute of our trip. We know we have overcome so much together, and we know it's important to take a few days as a couple to recognize that. 

When our daughter's diagnoses were given, I remember fearing what would happen with our marriage. We've stayed strong, and we've stayed together. We've haven't been perfect, but we have made it through tons of crazy scenarios that would have been great made-for-tv moments. Yet, this is real life. I'm glad we still choose each other and can work together through everything. 

Now...where should we go in 5 years? 

Mother's Day & What I Lack

Last week, I had a Mother's Day post on Key Ministry's site. If you missed it, have a read:

I have a small struggle on Mother’s Day, and it’s for a silly reason.

A few years ago, my son developed a skill that my daughter has not, and this is what trips me up ever so briefly. When a holiday or my birthday comes around, my eight-year-old son thinks of me. He panics if my husband didn’t have time to take him shopping for a gift for me. He hunts around in his room to find special treasures of his to give to me to express his love. I’ve received a Santa hat, a teddy bear, and sea shells as gifts from such occasions. They are tucked away in my bedroom, and I think about him when I see these items.

Keep Reading...... Click Here: Why I Will Lack Nothing This Mother's Day

Announcement....

It's Thursday!

Typically, I do Therapy Thursday on the blog. If you came here looking for it, you won't find it today. Last week was my last Therapy Thursday for the time being. I enjoy sharing that part of my life with you, but I have to stop for now.

I have several writing projects that I need to free up some time for in order to get them completed. I'm a little busy being a wife, working mom, running my kids to appointments, and putting up a never ending pile of laundry. If you are a parent, you get it. Free time is minimal, so Therapy Thursday is being left behind for now for other things.

Which brings me to my big announcement........

I am currently finishing up my first book of my very own. Yay! I've contributed to two books before, but this one is all mine.

For the past 2.5 years, I have worked on this book at night or on the weekends. Sometimes, I had 30 minutes to devote to writing it. Other times, I furiously typed for hours. There have been weeks and months when I had to focus on caring for Jaycee and the book went untouched. My kids came first obviously, so there were times when the dream of the book had to be placed on hold. It's been a long and tedious task, but the book is finally coming together. My plan is to have it completed and published on Amazon before the end of the year.

So, you'll still find a weekly post from me on Tuesdays here. If you follow the blog's Facebook page, then you be linked to other articles I write elsewhere. Of course, I'll announce the completion of the book here first. Stay tuned....

A Reading Must!

Last month, the book, Spring Devotions for Special-Needs Families, was released on Amazon. It was put together through Key Ministry and includes devotionals from Key Ministry's talented Christian writers. Sandra Peoples was the editor of this book, and I know many people will recognize her name.

Hopefully you know by now, I joined the Key Ministry writing team this year. So, I was able to contribute a few devotions to this book. Some other contributors were Barb Dittrich, Rev. Dr. Laura Bradley, Beth Clay, Tammie Hefty, Jonathan McGuire, Kathy McClelland, and Angela Parsley to name a few. 

If you have a child with a developmental disability or medical diagnosis, then I highly recommend this book. There is a short devotion that you can easily read daily for the next few months. Spring themes of Easter and Mother's Day are some topics of the devotions in the book, but most of them cover general parenting areas. As you read it, you are sure to be encouraged in your faith as you parent your child with extra needs. Consider checking it out if you haven't already.                                   

Find it here on Amazon!

Stressed? Here's Some Good Advice

I am presently on spring break with my children. Hooray!

Instead of writing out a long post this week, I'm sharing a sermon video from my church that really spoke to me. I have listened to this sermon a few different times on CD since I first heard it live in church. I won't deny that my life of parenting a child with complex medical and developmental needs is stressful at times. If you feel the same way, then you can probably appreciate this sermon too:

In case this doesn't play, you can follow this direct link:
https://youtu.be/-RU6M_a3DD0

Therapy Tip: Making Home Speech Therapy Successful

It's Therapy Thursday! This is the day that I share a tip based upon my experiences as a mother of a child with special needs and a pediatric speech-language pathologist. Today's tip is one I have many thoughts on:

Making Home Speech Therapy Sessions Successful

I have been doing in-home speech therapy sessions for over a decade now. For the past 11 years, I have been primarily working in my state's birth-three program, which mandates that sessions be conducted in the child's natural setting. That means that I conduct the majority of my sessions in the child's home. Daycares or a babysitter's home is my other main setting.

Working in a child's home can be a very positive experience. There's no better way to understand how a child's delays are impacting their everyday life than to watch them in their home environment. Having a parent or caregiver in the session giving input and relating successes and challenges makes home therapy unique and personally tailored. It really is the best way to have family centered therapy because the family and the home is the focus. Home therapy is also great for the family as well. They have access to the therapist who can answer questions or give advice.

That being said, home therapy can provide its challenges to therapists. The therapists are the visitors and have little to no control over some of the things in the home at the time of the visit. As a home visitor, I try to keep in mind that I am a guest in the family's home. I shouldn't come in their house with a list of demands and needs as I am there to support the family where they are at. That being said, there's some things that hinder the child's sessions and some easy things a family can do to make the most of the time. Today, these are my suggestions for making home therapy more successful:

1. Turn off the tv and tablets! 
There are some children who are so excited that I am there that they can completely ignore a television in the room. There are some children that are the exact opposite. These children will watch the tv and ignore me despite my best efforts. Some children will grab their parent's phone or tablet if a television isn't available. It's best to make sure all devices are put out of the child's reach and the television is turned off during sessions.

Even though early speech therapy with toddlers is play based and fun, it is work and learning is happening with the child. If you were doing something that required concentration, you would want minimal distractions for you. The same is true for your child. Sometimes, adults will have a program on for them. This doesn't bother me as long as the child isn't distracted by it and the volume isn't super loud. My preference would be for no televisions though during our session.

2. Watch siblings and make adjustments.
Siblings can be a help to sessions or a hindrance. There are some siblings that really provide a benefit for the session. They can model phrases or words for the child. They can model turn taking in activities or games. The older siblings can usually pick up on what I am trying to accomplish and really provide an excellent model.

On the other hand, there are some siblings who take over or cause more problems. I have been in some sessions in which I felt like I was a babysitter for the parent. I have literally been left alone in the living room with the child I am working with plus younger siblings. Younger siblings (those under 18 months) usually cannot provide modeling that I need from a sibling. Usually, they try to take our toys or materials due to their young age and take time away from the child I am working with. It should be understood that therapy time in the home is not a time for the therapist to be entertaining all of your children without the therapist's permission.

Similarly, if there are multiple siblings that are very talkative, this too can take away from the child's therapy time. I have had some sessions where the siblings fight and talk and talk and talk to me or each other and totally cause the child I am working with to stay silent and overlooked. The therapy is less productive in this scenario as well.

I won't say that siblings should or shouldn't be in sessions. My program encourages sibling involvement, but sometimes it is almost impossible (or time wasting). My advice to you is to watch how your other child(ren) react in sessions. You should be able to see if your child is helping or hurting their sibling's speech therapy sessions. If not, ask your child's therapist.

3. Make sure your child is awake.
This may seem obvious, but your child needs to be awake for sessions. There have been many sessions that I have arrived for as scheduled and on time yet the child is fast asleep. Sometimes, an unplanned nap happens in the afternoon, and this is understandable. There are some morning sessions though that parents wait for me to arrive before waking up their child. The process of waking up the child can take up to 10 minutes of the session. As a therapist, I value the time that I have for each session. Consistently using several minutes every week to awaken a child is not a productive use of the therapist's time. Please, make sure your child is up and ready to go before the therapist gets to your home.

4. Put away the pacifiers. 
If your child is attached to pacifiers, they most likely won't be allowed to keep them in their mouth for speech therapy sessions. Some toddlers will remove the pacifier and be fine for our sessions. Other toddlers will resist the removal of a pacifier and will cause a disruption in therapy for several minutes. If your child falls in the later category, then you will need to make sure the pacifier is removed before the therapist arrives to save some time in therapy. After all, your child will be less likely to speak if the pacifier is plugging up their mouth.

5. Be engaged and participate!
The best thing you can do for your child in home therapy is to be an active participant. Watch the therapist, so you can replicate what she does later. Ask questions, report problems, and give input to your therapist. You know your child the best, so you will have good information to give.

Home therapy with your child should be a positive experience for everyone in the home. You don't necessarily need a special space or room for therapy for it to be successful. But, minimizing distractions and being attentive to your child during sessions can help your toddler get the most of their time in therapy.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.