We Can Do Hard Things: Jennie Burt–Special Needs

Meet Jennie and her son, Mitchell.
At age 24, Jennie delivered her first child, who was unexpectedly diagnosed with down syndrome. Her journey changed the instant she realized her expectations weren't what she thought they would be. However, she is realizing this different journey with an extra chromosome has brought with it extra love, extra laughter and an incredibly extraordinary human being. 

Q: What words do you find most helpful when people talk to you about Mitchell?

A: “I appreciate hearing how Mitchell is doing. Everyone has an opinion…that’s what makes the world go ‘round. Communication is huge and essential when it comes to kids! I’d rather know what Mitchell is up to than have to guess or find out months or years later if there is an issue. Once I hear it then I can decide for myself how to take it. I may not be able to control other people from making rude or harsh comments, however I can control how I react or receive it and then take it from there.An open dialogue is essential to educating both the child and others.”

“We love when people ask how they can help Mitchell. One of the greatest examples… his primary teacher came up to me and told me Mitch would be in her class and she asked what she could do to help him stay sitting and try his hardest to pay attention so he could participate. I almost cried when she did this because I had the answer! He loves magnadoodles. The ticket to Mitch having an attention span is his “draw” as he calls it. The next week she had a magnadoodle, granola bar and fruit snacks in her primary bag and there were no words for how appreciative I was as a mom who was seeking for inclusion of my son in a social, spiritual setting. Mitchell’s spirit is pure and he has so much to offer and teach when people give him the opportunity.” 

Q: Are there any actions performed by others that have come across hurtful?

A: “Right after Mitchell was born we received a sympathy card in the mail. As a new mom I was expecting congratulations instead of condolences. It didn’t cross my mind that would even be a possibility until it was in my hands telling us how sorry they were about the situation. To me as a first time mom I didn't know how to take it. There were some who either out of ignorance or fear who knew of kids with Down syndrome but they would tell me they were "institutionalized.” I'm devastated when I think about that word and its meaning. Mitchell, like any other child with intellectual disabilities deserves the same treatment others receive. He is so much smarter than a lot of people realize. He senses when others are scared of him or intimidated by his openness. He gets when people get him…regardless of his own limitations. He sees people’s hearts, not their apparel, race, gender, color or creed. He loves with pure intent, and that is what makes him so perfect.”

Q: What acts of kindness have you received that you have appreciated?

A: “After Mitchell was born, family members took turns on a weekend and slept over. They stayed over night to take care of Mitchell so Steve and I could sleep. We hadn’t had a good night’s rest since Mitchell’s birth. The second he was born I became a worrier. I was so consumed with Mitchell’s physical health, well being, and sleep that I didn’t think to analyze my own well being and quality of sleep! My mind never rested and so knowing that family members were caring for Mitchell gave me the peace of mind I so desperately needed in order to just sleep.”

“Also, my neighbors told me their cleaning ladies were scheduled to come to my house at a specific day and time. Hands down one of the greatest things that happened. It was literally and figuratively cleansing. My house was clean and tidy and organized so I felt even more charged to clean, tidy and organize myself…inside and out.”

Gift Ideas:

• Hiring a someone to clean their house.
• Taking the night shifts so parents can get some sleep.
• Communicating with the parents and trying to include their child.

And I couldn’t resist throwing this picture in.

In his moms own words:

“You know the silence in your house when it almost becomes deafening and you realize it’s too silent for comforts sake? It is during that silence when I walk in and see Mitchell creating art with a sharpie. Everywhere. The world around him was his canvas. There was black Sharpie on what felt like every inch of him, his bedspread, the walls, the carpet, our TV, his tongue and even our dog. All in a matter of minutes. I’ve never laughed so hard in my life because it was a choice to either laugh or cry at that moment, and it’s not a good look when I cry. That is, surprisingly, a small predicament in the life of Mitch Man.”

We Can Do Hard Things: Tessie Friedli

Meet Dakota and his mom, Tessie.

Dakota was born healthy and active. When he was 2 years and 3 months old, a fence panel fell on top of him which left him unable to breathe. No one was next to him when it happened and due to the lack of oxygen, he couldn't breathe or cry for help. By the time he was found, they estimate it took about 20 minutes, he was left with an anoxic brain injury. In an instant he went from a healthy, busy, talkative, active 2 year old boy, to a boy that could no longer walk, talk, eat, or even breathe on his own. He should have passed away, but miraculously, he chose to live. Dakota has progressed over the last 5 years since his accident, but he is still very limited by his body. He cannot use any part of his body as he would like and his only form of communication is through his facial expressions and eyes. He has a g-tube for feedings and a trach for breathing and suctioning. We are so blessed to have Dakota in our lives.

Q: You and your husband experienced so much that first year, what did you find most helpful during your stay at the hospital?

A: “Some of the best things that were done for us were gift baskets that were either dropped off or mailed. Baskets with snacks, blankets, thank you cards, journal, chapstick, tissue, slippers, comfy clothes, etc were SOOOO helpful because we were literally living at the hospital for 6 weeks. Those little tokens were so helpful and made being in a hospital a tiny but more bearable. Our son's nursery class in church sent him coloring pages from all the kids and teachers which we were able to put up in the hospital room to feel it with cheer. TONS of Toy Story toys were either brought by or mailed because that was Dakota's FAVORITE thing! It was comforting having little reminders of things he loved around him although we realized he had no idea they were there. Our parents and siblings printed off poster size pictures of Dakota that we hung all around the room. This was probably my MOST favorite thing because it allowed the nurses and doctors who were working on him to get a glimpse of who this little boy underneath all the hoses really was, what he looked like, what he loved, and how much he was loved.”

 (Dakota, before his accident) 

Q: After spending six weeks in the hospital, what was most helpful after returning home?

A: “The first few months home were extremely overwhelming to say the least. Dakota was very unstable and needed around the clock care. We hardly slept and we were literally in survival mode. Nothing at all was the same as it once was. Our days were filled with tons of meds, g-tube feedings, therapy, suctioning, mourning, and adjusting. It was a very hard time for my husband and I. We still weren't ready to face the world—our  friends and neighbors who wanted to see us and Dakota. Luckily for us our friends and family understood and were patient with us as we focused on adjusting to our new life. Instead of stopping by, they would text thoughtful messages, leave notes at our door or send them in the mail to let us know they were there for us. (Some people might love a visit, everyone is different.) Our parents were the most helpful during this difficult and dark time. They came up weekly to let us get out and go on a date, which gave us a much needed break. We needed that time alone and together and away from all the chaos. That was literally our saving grace.”

“We also had amazing church members that brought us meals for not just a few days or weeks, but literally a few months! I realize that was probably a difficult task for all of them and how much they sacrificed for us...but those meals were lifesaving. The last thing on my mind or that I even had time for was wondering what to make for dinner. Their kindness and compassion in bringing us those meals gave me a little bit more strength and energy to get through the day. We had random friends and neighbors outside pulling our weeds. The help with those mundane, time consuming tasks was THE BEST thing that anyone could have done for us!! The kind notes, messages, and money that came in the mail also continued...not just for days, weeks, or months but for a couple years, although they got fewer and fewer. I think so often people forget about someone's struggle after the newness and freshness of it all fades away...but it was those lingering notes of kind and encouraging words that gave us the strength to keep going and allowed us to see and feel that our Heavenly Father was still aware of us...sending his earthly angels to continue to strengthen and encourage us to not give up.”



Q: What are helpful things that people do now, five years later?

A:  “Dakota has progressed into a happy, sweet, INCREDIBLE little boy who radiates a little piece of heaven everywhere he goes. It took a couple years to be able to accept this new Dakota, trust in God's plan for Him, and move forward with faith, hope, and PURE happiness! I no longer look at this trial with devastation and heartache as I once did although my heart still misses that 2 year old boy I once knew. I have been able to see and feel through the grace of God what a blessing this trial has been for me, my family, and ALL those that know Dakota. I now can say with complete certainty that Dakota chose this plan to be a light for all the world to see. His eyes sparkle with a light only heaven can give. He has done more good in his short 7 years then most can do in a lifetime. Saying all of this...it doesn't take away that my daily load is still heavy. He still needs help to do everything! I still have times where I feel overwhelmed or just tired. Luckily for us we have amazing parents who step in and babysit for Dakota since only those who are trained with a trach can watch him. He goes to school and it melts my heart to see the kindness and friendship from the kids at his school. I think as a parent if you can teach your children how special and amazing the kids with special needs are it will make them more comfortable around them and will in turn allow them to be kind and loving towards them. That means the very most to parents of special needs kid. I will never forget when a mom from Dakota's preschool called to see if Dakota could have a playdate. She had no idea that Dakota had any special needs. Her kid just loved him and wanted to play with him!”

 
Website: http://zachandtessie.blogspot.com/
Tessie has also guest posted {here}

Gift Idea: 

Tessie mentioned dinner being delivered for months. Here’s a fun twist. I purchased the ingredients to make spaghetti, printed the adorable free printable designed by Miss Audrey Sue, and threw it all together in an adorable colander. (You can download the printable below)  After purchasing everything, I literally put the basket together in less than 10 minutes, including a note on the backside of the printable. This is a great alternative to delivering dinner when just wanting to drop by unexpectedly. Therefore if they already have dinner planned, they can use it for another night.

Basket includes:

• Colander (Found {here}, or a smilar one from Amazon {here})
• Spaghetti sauce
• Spaghetti
• 1 bag of salad
• Ranch dressing
• Parmesan cheese
• Cookie mix
• French bread (not pictured)
• Free printable (sign up below)
• optional: meat to add to the spaghetti sauce.

Note: We thought we would make it easier and deliver the free printable right to your inbox. Don't worry, we won't sell or give your e-mail address to anyone. If this is your first time subscribing, watch and make sure our e-mail isn't delivered to your junk folder :)

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We Can Do Hard Things: Cate Johnson - Special Needs

Meet Jett, and his mom Cate.
Seriously, how cute are they?

Cate's little boy Jett, was diagnosed with regressive autism just before his second birthday. He developed completely typical until that point. It has been a devastating beautiful road for her little family to be on.

Q: Many times, people aren't quite sure what to say, so they tend to avoid the topic. What are some comments that people have said to you or your family that you have appreciated?

A: "Tell me how adorable my son is! I love to hear things like 'He is such a sweet boy,' or 'his smile just brightens my day!' Ask me what type of things he enjoys and loves doing. My children are my passion in life I am more than happy to talk endlessly about them." 

"One of my good friends and I used to tease that our children would grow up and get married. After Jett was diagnosed, she continued to tease about the arranged marriage of our children, it meant everything to me that she never stopped." 

"Be excited for us when are child does something that yours may have been doing for years at this point! My son potty trained just before his 5th birthday, I swear my family and friends were JUST as excited/proud as my husband and I were! When every single milestone is earned you can't help but want to celebrate them!  We have been blessed to have so many wonderful people cheering our sweet boy and us on!  Being loved and accepted is something we all need and crave."

Q: I think most people usually have good intentions, but has someone's actions ever been hurtful?

A: "I had an experience where a group of women asked if I would only bring my daughter to play groups because it was too stressful to have my son there. I think a good rule of thumb is to remember is to treat those how you would want you and your child to be treated. We will never regret being extra kind and understanding towards others. Honestly play dates often are NOT very fun.......but please know that parenting a child with "extras" can be a tricky business and at times can be very isolating.....invite us anyway." 

Q: What things have been done for you or Jett that you have appreciated?

A: “We have tried every special diet under the moon! One time at a party someone brought dairy/gluten free cookies with a tiny label with my sons name on it, I got home and sobbed. That little act of kindness did not go unnoticed. Dropping dinner off, inviting my child to a birthday party or remembering and asking about things that are going on in our lives makes us feel so loved. Dear friends that have stopped by unannounced saying they are there to "see me and not my home" and end up crying or cleaning with me. Friends that have written me nice notes saying things such as 'You are doing a good job, you are a great mom.' or instead of asking me, 'if they can do anything,' they've said, 'What time can I.....  bring dinner, tend your kiddos, go for walk together..ect' I love that because I don't feel quite as guilty taking a little reprieve from the demands of parenting a child with extras when the question is prefaced with "what time can I.." it takes all the pressure off of me and I am far more willing to except help and friendship.

Website: www.athomewithcate.com

Gift Idea

Image design: Miss Audrey Sue

I would have never guessed that a single cookie would mean so much, but as a mom, I completely understand why! When I read over Cate's answers, I realized how a treat is totally doable for anyone! So whether your planning a party, or just want to stop by with something in hand, but aren't sure where to get gluten and dairy free treats (I had no idea!), here are a couple ideas to make it easy.

• Cate recommended this cookie recipe {here}.
• Not up to baking cookies from scratch? You can order these inexpensive cookies {here} or {here}. Cate said, "Amazon is any GF mamas best friend."

Gratitude Journal

When experiencing different trials in my life, it has often been difficult for me not to let the experience consume me. For example, the stress when Pat couldn’t find a job, or the gaping hole in my heart after losing Preslee. And once I’m thinking about a specific trial, my thoughts tend to become quite negative, which never helps anyone during hard times.

One of the gifts I have appreciated the most is a Gratitude Journal. After reading Elder Eyring’s inspiring words {here} I’ve been inspired to write in it daily, but I always make it a point to write when grief takes over. Just taking a few minutes before bed to review my day and think about what I have been blessed with often changes my attitude towards life and helps me realize that a loving Heavenly Father is still present in my life. It helps me focus on what I have, rather than what is missing. Elder Wirthlin once stated, “Thinking of things we are grateful for is a healing balm.” I can honestly say my gratitude journal has become a healing balm.Gift Idea: A gratitude journal, along with Elder Eyring’s talk is often one of my go to gifts to drop off to anyone struggling in any situation. You can print the quote from up above which I’ve made into a free printable to place in the inside the front cover of a journal. (Below, just click the arrow in the top right corner to download)

Tips: Any type of journal will work. In the past, I’ve found some really cute inexpensive ones at TJ Maxx, or I’ve ordered This leather one (which is adorable!) or this Gratitude Journal (I love that it doesn’t have specified dates) from Amazon.

Additional Inspiration: Read Joseph B. Wirthlins words {Here}

We Can Do Hard Things: Kristi Kimball

 

Meet Lila.

This sweet girl was born with an incredibly rare, genetic and terminal condition called Vici Syndrome. The average life expectancy is around the age of three. When Lila was born, the gene responsible for her condition hadn’t been discovered yet, so genetic testing couldn’t tell her parents what was happening. Lila’s mom, Kristi spent thousands of hours at the computer researching medical journals and obscure articles. When Lila was just 16 months old, her mom finally found a syndrome that seemed to match all of her daughter’s symptoms. She googled images and found what appeared to be her daughter’s twin brother on Facebook. After talking with this boys parents, and working with doctors in England, they were finally able to give Lila a diagnosis. Lila’s parents learned they were both carriers of the gene, (which is extremely rare) and the doctors told Kristi and her husband all they could do was love Lila and make her as comfortable as possible. Lila lived for nearly four years and changed her family’s life forever. I felt Lila’s mom said it beautifully when she said,

I asked Lila’s mom, Kristi, a few questions which she answers below. 

 

Q: Over the years, I’ve heard many different words used, for example, special needs, handicapped, or disabled. In your opinion, what is the best term to use?

A: “In my immediate circle, people use the term special needs. I think some people are offended by disabled or handicapped because it tends to focus on the negative. Special needs is a gentle way of saying something is different about our children.”

Q: What were some of the most meaningful acts of kindness performed for Lila or your family?

A:  “A friend took photos from my blog and made a silhouette for her birthday. This was unbelievably kind since Lila could never sit up. I thought a silhouette would never be a possibility, but she worked with an artist and spliced two photos together to make it look like she was sitting up.”

“A few more that we appreciated were:”

• A friend made arrangements for a videographer (she was in the wedding business) to come and video our family and take footage of us all playing together.
• A friend sent Lila a jersey and hat from her sons little league baseball team with a picture of the team and told Lila she was an honorary member.
• I would receive letters and cards telling us how much Lila meant in their lives.
• Any visit while we were inpatient. Lila spent a lot of time at the hospital, and it gets quite lonely there.

 

Q: Before Lila passed away, what were some of the most helpful things said to you?

A: “Becoming a special needs parent was not an easy road for me. I was angry, shattered, depressed, in denial and deeply frightened of the future. Trusting in God’s path and taking it all in faith came much much later.  It was hard to see that being Lila’s mom was going to be the biggest blessing of my life; at first it just seemed like such a tragedy and a cosmic joke. I look back and wonder how I made it through that part of my life. I can see now that I wasn’t easy to be around then. I cried at the drop of a hat and would give angry retorts at well meaning comments.  I am grateful for the people who stuck it out and were willing to take my anger head on. I was grateful for the people who were more than willing not only to offer words of comfort but to listen to my fears and not judge me.”

“I appreciated the people who were completely honest. I felt relieved when someone would say.” I have no idea what to say, I just love you and love Lila.”  It made everything so much better. Then I wouldn’t have to try and not take offense by some well-meaning comment, or try and assure them that I was fine, because I wasn’t. We could just both acknowledge that I was going through one of the worst things in the world and that truly nothing anyone could say would help.”

Website: Kristi blogs {here}.

*Note: This person’s experience is their own, and doesn’t always represent someone in a similar situation. Please be kind.

Wondering what this post is all about? Click {here} for the intro post.

We Can Do Hard Things - Together

Not long after losing Preslee, our family took on the mantra- I Can Do Hard Things. Over the past five years, we’ve repeated the phrase time and time again. The neat thing is, after reading many different e-mails, so have many of you.

 

Losing Preslee changed our lives in so many different ways, but so has this blog. We’ve been uplifted time and time again. From the sweet and encouraging comments that were left during Preslee’s hospital stay, to the love and support we were shown during the funeral we will be forever grateful to those who reached out to our family.

Over the past few years, I’ve learned from so many of you that God hears our prayers and His answers usually come from ordinary people who choose to listen to His promptings. There have been many times I’ve thanked my Heavenly Father that we don’t live in a world where we have to experience trials by ourselves.

Now, five years after losing our daughter, I continue to receive a surprising amount of e-mails asking for ideas on how to help others struggling with different trials. I’ve learned most people want to help, they just don’t know the best way to go about it. Not long ago, an idea came, and it hit hard. I suddenly had different images of the blog swarming around in my head, and I haven’t been able to shake them. With a lot of prayer, and direct guidance from above, I’m excited to introduce a new segment on my blog, one that makes my heart incredibly happy.

If you scroll up to the top of the page, and look just below the header, you’ll notice a new tab – How to Help. If you click on it, you’ll find a new page titled, We Can Do Hard Things. On that page is an index filled with different trials, such as - Death, Addiction, Infertility, Illness, and many more. If you click on “Death-Child,” you’ll be able to see posts already listed. The purpose of the index is to share ideas on how to help others going through these trials, along with printables, and resources to help make serving easy. I’m hoping these posts will help readers learn what is most helpful to do and say to those who find themselves in the midst of a difficult trial.

 

After weeks of brainstorming a name for this segment, I settled on – We can do hard things because I find  the phrase has two meanings:

1. I know it’s possible to accomplish hard things, especially when we receive help from others.
2. Sometimes serving is…hard. Let’s be honest, there are times we don’t have a clue where to start when wanting to help someone, and showing up on their door step can be nerve wracking. It can be extremely intimidating when we don’t fully understand what someone is going through, but all we know is we want to help.

This is why the blog has been a little quiet over the past month or two. I’ve been hard at work, reading, researching, and corresponding with individuals who have experienced the trials found within the index. I am incredibly excited to begin introducing these posts and hope they will be able to help those searching for ways to serve.

My heart is bursting.
I feel this might be a way for our little family to pass on the kindness that has been shown to us.
I can’t wait to share what I’ve learned from so many incredible people.

Stay tuned (later this week) for the first post in this series… helping families that have been blessed with a child with special needs.

Special Needs