We Can Do Hard Things: Jennie Burt–Special Needs

7/25/2016

March 16, 2013 046

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. 

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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.” 

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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.”

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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.”

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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.

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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.”

News Article

7/20/2016




A news article was released this weekend on Preslee's 6th Angelversary. It's about Preslee and our family. 

I have big plans and dreams for this blog, as well as for Preslee's legacy. I've finally been inspired to take a leap of faith and make it happen. I've been working hard behind the scenes and cannot wait to show you what we have in store. My hope is we can help others just like we were helped at such a difficult time in our lives.

Anyway, back to the article.

Click {here} to read it.
Love to you all!

6th Angelversary

7/16/2016

After we lost Preslee, I was surprised at how much she  consumed my mind. I would try so hard to focus on something else, but even if I would succeed, it seemed like minutes later something would trigger a thought back to her, and the sick feeling in my stomach would come rushing back. Though others told me it was normal, it was extremely overwhelming.

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I remember thinking I had reached my breaking point, and I asked Patrick’s step brother, who had lost his dad years before, when those thoughts quit consuming him. He thought it over for about a minute and then replied, “About six years. I’d say it took about six years before I was able to wake up in the morning and my thoughts weren’t immediately focused on my dad.”

I remember thinking, “Six years? I’ve only been married for three. I haven’t even been out of high school for five!” Six years seemed unreachable at that point.

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Today marks six years since I held my little girl in my arms and felt her take her last breath. As I was reflecting back over our journey, I realized Pat’s step brother was right. I’m not sure when it happened, but sometime over this past year, Preslee is no longer the first thing my mind turns to each morning. And I’m grateful I don't feel any guilt over it.

This past year was one of the most healing. I’m not sure if it has to do with our trip to Kauaii, the fact that we moved out of state, or it's simply due to enough time has passed, but I feel like Pat and I have taken some big steps forward. For any of you who find yourself on this same journey, I hope this gives you a little bit of hope.

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Thinking back to when we realized Preslee wasn’t going to make it, I honestly didn’t know how I was going to walk out of the hospital empty handed. Reverting back to being childless was one of the most painful moments of my life. As I look back on those memories, I realize this blog has been an incredible source of strength for us. Thank you for taking the time to check in our little family, and for those who take the time to leave words of encouragement. They haven't gone unnoticed.

A sweet reader sent me the quote above, and for the past six years I’ve clung to it. There have been many dark days, even one this past week, but I’m grateful I’ve had these words to lean on, and I'm even more grateful that I'm beginning to see glimpses of this quote come true. With Pat, 3.5 kids by my side, and an angel watching over us from heaven, life has turned out so much better than I imagined it would.

Though heavy emotions always come flooding back, today there's gratitude mixed in with sorrow. I'm grateful we don't have to experience dark moments forever, and for a loving savior who took on the pain that he did, so healing and happiness can take place in all of our lives. I'm thankful that even though six years seemed out of reach, that we've been able to make it this far. Which gives me hope that we can make it until the end.

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Here’s to being six years closer to holding you sweet girl.

Love you Monkey.

 

Miss Audrey Sue has done it again.
This is by far my favorite printable she has created.
Use the box below to download the free printable.
I hope you enjoy as much as I do :)

Family Search

7/13/2016

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After Preslee passed, I became interested in family history, (Read more about it here). Over the past few years I’ve dove into it, and worked on Patrick’s side of the family, who has had very little work done.

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Ledger holding his i (chart you) genealogy chart I had printed last year.

After the twins were born, my work has slowed way down in this area, so when I heard about Family Search’s Worldwide Indexing event, I thought it was the perfect time to jump back in.

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From July 15-17, FamilySearch International will sponsor the third annual “Worldwide Indexing Event,” bringing 72,000 people from around the globe together online during a 72-hour event to save the world’s records by making them searchable to the public.

During the 72-hour indexing period, volunteers participate by downloading the FamilySearch software and completing as many names as they would like.  Anyone with a computer and internet connection can join. 

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To join 72,000 teammates in saving the World’s records, click here.

If you aren’t familiar with FamilySearch, it is the largest genealogy organization in the world. It is a nonprofit, volunteer-driven organization sponsored by The Church of Jesus Christ of Latter-day Saints. FamilySearch and its predecessors have been actively gathering, preserving, and sharing genealogical records worldwide for over 100 years. Patrons may access FamilySearch services and resources free online at FamilySearch.org or through over 4,921 family history centers in 129 countries.

Pretty neat huh? I hope you’ll join us this weekend. Let’s get indexing!

Pictures

7/07/2016

 (All these pictures are from last fall, before I took my little break)

At the end of last year, I witnessed a sweet moment between all three of my boys and quickly ran to the nearest closet to grab my camera. When I turned back around to snap the picture, I realized I had missed my moment. As I stood there with my camera in hand, I immediately became visibly upset, and Patrick asked why I hadn’t just used my iPhone camera instead? I didn’t respond, but I knew the answer. After Preslee’s death, I’m always grateful for the my high quality pictures vs. my phone images. The higher quality allows me to do so much more with them.



That’s when it hit me.

I was taking multiple pictures a day, strictly out of fear. Not because I wanted to, but because I was afraid this moment might just be our last… Even though I did take a lot of pictures of Preslee, it was different back then, fear didn’t control me.



Grief is a confusing.
It took me 5 1/2 years to realize what was happening.

After understanding my emotions, I knew the only way to conquer my fear was to do what I’ve done in the past. Just like learning how to deal with water, leaving my kids with a babysitter, and visiting the canal, I knew I needed to face my problem head on. So I packed my camera away and took a break from social media for awhile.



In the beginning I struggled, it was difficult to break a five year habit. But as the weeks passed by, that fear slowly subsided, and I quit reaching for my camera, (I did occasionally take pictures on my phone). I can’t begin to describe how wonderful it was to soak up moments with my boys and not watch them from behind a lens. Four months passed by, and then Cruiz broke his leg. The situation forced me to pull the camera back out, and it was then that I realized I had conquered my fear.   



Grief is truly mind boggling. It seems to have a mind of its own, and loves to affect everyone in its path differently. Before we lost Preslee, I would have never dreamed it would still affect me as much as it does. Six years later, I’m still learning grief doesn’t automatically end one year after losing someone. It’s a process, and I’m still working through it. I’m grateful it’s not as intense as it was in the beginning. Just like a fellow Angel Mom once told me, "With time, it becomes softer," and I wholeheartedly agree.
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