Thankful, Grateful: The People who Help Us

I'm not completely independent. I can't raise my children all on my own all the time. I wish I could, but life is complicated and messy sometimes.

I don't need a house keeper, though that would be nice. I don't need a babysitter for date nights, since those are virtually nonexistent. No, no- the help I need is out of the ordinary due to my daughter's medical and special needs. There are many people in our lives that fill holes and jobs that I simply cannot do all the time.

I'm certainly grateful this Thanksgiving for:

Jaycee's Grandparents
Jaycee's grandpas and grandma are always quick to jump in and help our family. My mom has rode along on numerous doctors' appointments with Jaycee and I, so I would have company for the hours of driving. My mom has watched my daughter when she was home sick so I could work which has required her to learn how to do her vest therapy, use her monitor, and administer different medications. She has been the only brave soul who has kept Jaycee overnight so I could have a break.

Countless times over the past 11 years, Jaycee has gotten sick in the middle of the night or had an urgent need. Countless times, we have called Jaycee's grandparents with this upsetting news in order to have them meet us at the hospital or take our son while we transport Jaycee to the hospital. They have adjusted schedules, work, and their lives to help us during those crazy times. They have ran to the pharmacy to get medicines when I couldn't leave the house with Jaycee. They have brought us meals when Jaycee was sick requiring medications round-the-clock. They have helped us a dozen different ways over the years and for that, we're grateful.

Uncle Grumpy and Aunt Steph
My sister-in-law, Stephanie, and my brother Josh (AKA Uncle Grumpy...Jaycee called him this a few years ago and I still refer to him as that) have also helped us multiple times over the years. They have helped with my son's care while Jaycee was in the hospital or at a doctor's appointment. They have picked Elijah up from school, finished his homework with him, kept him overnight, and taken care of him when needed- sometimes with little notice. We're grateful to have people we can trust to take care of our son when we're not able to do it.

Jaycee's Individual Aide
I can count the number of non-family members who have watched Jaycee over her lifetime on one hand. Her needs are great, and only a responsible, patient person can be trusted to care for Jaycee the way she needs cared for. As you can imagine, it's a really bizarre feeling as a parent for their child to need an individual aide at school but you have no say in who that person is. When Jaycee was going to get a new school aide about 5 years ago, I was a little worried. I wouldn't know this person, who would suddenly be spending hours a day with my child.

Fortunately, Ms. Shannon and Jaycee have gotten along just fine over the past few years. I have seen and heard many horror stories when it comes to aides. I feel very blessed that I can send Jaycee to school each day knowing that she is in good hands with her aide. I know she cares about Jaycee, and I have no fears sending her off to school. I'm so thankful we have a great aide for Jaycee. 

Jaycee's Teachers
Jaycee has been in the same classroom from Kindergarten to 5th grade presently. When your child spends years with the same teacher, you pray you'll like them. Otherwise, it will be miserable for everyone involved. Like your child's individual aide, you hope the teacher is patient and understanding with your child with limited verbal skills and many, many needs. We have gotten to know her classroom teacher and aide well over the years. Ms. Amy and Mrs. Tolley have been wonderful with Jaycee. I believe they treat her like she was one of their own children. They know when to be stern and when Jaycee needs a break. Her teachers have sought my input when things aren't going right and listen to me when I have something to share. Teachers like this are a blessing, and I'm thankful she has caring people who treat her well at school.

Cousin Gabby

Jaycee has 7 wonderful cousins, but there is one that is her definite favorite. A few years ago, cousin Gabby became Jaycee's delight. Gabby has accepted the fact that Jaycee is going to want to hug her, kiss her, mess with her hair, go in her bedroom, and take a few dozen pictures with her every time they are together. Gabby has learned Jaycee's gestures, signs, and words so she can communicate with her. When Jaycee calls Gabby on FaceTime, Gabby knows how to entertain Jaycee. Jaycee just loves her cousin's attention. She asks for Gabby's whereabouts multiple times a week. Cousin Gabby makes Jaycee happy and that makes me happy. 

This Thanksgiving, I'm grateful for all the people who play an important role in caring for my children and supporting our family. They make our lives work, and I'm thankful for all of them. I hope all of you have people like that in your lives. 

I Never Thought...Day 6

This week for Down syndrome awareness month, I'm sharing some moments that I never thought would happen when I heard my daughter had Down syndrome. The way Down syndrome was presented, I was sure her life (and therefore mine) would be limited. I pictured a million scenarios after her diagnosis, but I never imagined she would have such a full life with amazing experiences.

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After Jaycee's diagnosis of Down syndrome, I never thought our everyday life would be so much fun. First, let me be real. There are some hard times. Behaviors are hard to deal with. Surgeries are no fun for anyone in the family. Illnesses are equally unfun. The lack of verbal speech has not always been easy. But, we have had many, many, many fun and good days!

I didn't know what our future would be like when Jaycee was a baby. I had a thousand questions for which only time would reveal the answers to. But this question was a big one: What would we be able to do as a family when there's a disability to consider?

Well, the answer is...tons of things.

Here are some things we have enjoyed doing the past few years as a family.

Theme parks! We love them! We have to consider how hot the temperatures will be and look at the waiting time to get on a ride, but we can enjoy theme parks together. We have come to love going to one of our nearest parks, Holiday World, which thankfully has a wonderful disability access program.

Jaycee with the important people from Holiday World. She loves characters!

We also do vacations! We generally don't do extravagant vacations. We aren't jetting off to another country or even the other side of our own country. But, we find plenty of things to do when we have the extra money and time to travel. PS- I am THE worst rider in a vehicle not Jaycee...not even close. 

Here's Jaycee rubbing Lincoln's nose this summer on vacation.

Small stuff! I, personally, love to do small things at home! Jaycee has become interested in fishing, which is something we can easily do where we live. She's braver than me, because I do not want to touch a fish or a worm. I prefer other home activities such as making pizzas, sitting on the porch swing, going for golf cart rides, and watching movies together. There are many things that we can do together as a family.

So no, I never thought that our everyday life would encompass so many fun times together. I worried that Down syndrome would prevent us from having some "normal" family experiences, but I should not have been worried. We've done many things together and developed our own family hobbies that make life fun.

Things That Happen Between Skillet Concerts

Time gives the wonderful gift of perspective.

Have you ever looked back and asked yourself why you got so worried or upset over a situation? Maybe you looked back and realize things that felt VERY important at the time didn't really matter at all later.

The passage of time allows us to have a different viewpoint and understand things that can't be comprehended in present circumstances.

Since becoming a parent, there are certain thoughts that have ran through my head at various times:
Will it always be this hard?
Will my daughter live through this present health crisis?
Will my daughter be able to ____ one day?
What will my family look like in the future?

These are questions that can't be answered. Only time will allow me see what these answers will be.

Recently, God used the gift of time to show me something about some of my questions.

Let's go back....

In March 2010, my husband and I went on a date. Our son was 7 months old at the time, and our daughter was 4. In the 4 years of being a parent, our daughter had 2 open heart surgeries and 2 other minor surgeries. She had been in the hospital a few times for respiratory illnesses and required daily medications for her lungs. It had been a very rewarding and challenging 4 years.

My husband and I had been immersed in the world of raising a child with a developmental disability with chronic health problems, so taking this night to ourselves was rare. Our special night out included VIP tickets to see Skillet and Toby Mac. These are two Christian musical artists that we absolutely loved. It was the first time Toby Mac had a concert near us, and I was not going to miss out.

Skillet's part of the night was unforgettable. It was the first time my husband and I had seen fire blazing on stage in tune with music. I was smiling, laughing, and in an awe of what my eyes were seeing.

Then my crummy thoughts came.
Will I ever be able to do something like this with my daughter?
Back then, I never saw it happening. I couldn't take her out in public at the time without her running off or making a scene. I didn't even know with her lung and heart problems if she would be able to live to see double digits. This unanswerable question in my head tried to ruin the concert.

My joy momentarily waivered as I tried to put this question out of my head. As Toby Mac sang and danced, I couldn't help but feel happy. My husband and I had a great time!

Now, it's time to fast-forward to 2017....
Earlier this month, my husband, daughter, son, and I sat on a grassy hill inside a theme park listening to guitars and drums on a large stage. Skillet was performing, and the four of us were equally enthusiastic to hear our favorite songs.

My daughter pointed to the smoke that went off during a song and exclaimed, "Dada!!"

"Yes! That's cool isn't it," my husband told her.

As we sang and jumped and clapped and cheered, God reminded me of a thought that I had forgotten about.

God took me back to my last Skillet concert 7 years prior when I wondered if Jaycee would be able to do this very thing she was doing. For a second, I got a little teary eyed watching my kids enjoy the very loud music. The desire of my heart was fulfilled!

As I said, time gives a gift of perspective. I just have to be more patient to see the good things coming!


Here's Jaycee being amazed by Skillet:

10 Things I Never Expected to Do As a Parent

When I was pregnant with my first child back in 2006, there were things I expected to happen. I expected diapers, crying, toys everywhere, the occasional sniffles, first day of school, family pictures, etc. I got that and so much more. The labels of Down syndrome, AV canal heart defect, Wolff-Parkinson White syndrome, asthma, sleep apnea, GERD, and lung cyst all brought unexpected things to my parenting experience.

As I measured the bald spot on the back of my daughter's head last night to see if it was getting larger, I thought, "This is something I never expected to do as a parent!" And yes if you are curious, it was a half centimeter larger than a few weeks ago.

Here are 10 things that I never expected to do as a parent:
-Choose my daughter's hairstyle based upon a bi-pap mask. If her hair gets too long, the mask doesn't seal as well. Plus, the headgear makes wrinkles and uneven waves in her hair. That's why short hair is the best style for her.

-Leave a pharmacy with a bag full of medicines for my child every month.

-Arrange my daughter's furniture in her room based upon her medical equipment and outlet locations. Her bed has to be near an outlet for the bi-pap and nebulizer. Her chair must be close enough to another outlet for her airway clearance machine.

-Wonder if my child was going to die. Yep, I never expected that one. But more than once, a bad news talk from a doctor left me wondering what was going to happen and praying Jaycee would live.

-Buy diapers for 9 years and counting for the same child. Thankfully, she just needs them at night.

-Carry a bag with a change of clothes for my 9 year old when we go out. Now, her accidents are rare, but they can be expected if she's in unique or stressing situation.

-Perform so much therapy on my own child. As a speech-language pathologist, I never imagined using my training in language, apraxia of speech, and feeding treatments on my own child.

-Interpret my child's attempt at communicating with others for years. Around me, Jaycee uses many signs, gestures, and some word approximations. I never imagined being an interpreter for my 9 year old child, but I'm happy to do it.

-Dread a phone call from my child's teacher so much. Due to Jaycee's breathing issues, I hate to see the school show up on my caller ID. Let's face it, school professionals usually don't call with good news, but I'm worried a call from them means Jaycee's breathing is in trouble.

-Be so proud of someone who doesn't achieve the typical things. There's no "My kid made the honor roll" celebration or a high five because she made a sporting achievement. No, but I'm proud. Proud of her efforts. Proud of any attempts. Proud of her Special Olympics competitions. Proud of her trying to write her name. Proud of her for saying her 15 words. Proud that she can put soap in the dishwasher. Small victories make me proud.


Maybe parenting Jaycee hasn't been everything I expected. But, that doesn't mean that it hasn't been worthwhile and fulfilling. The truth is...I like being Jaycee's parent.