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Friday, November 28, 2014

in the spirit of giving ~ to the strongest family we know

Strong Momma Alert
I am so honored to feature this thriving family on the blog this Thanksgiving weekend. They are the epitome of a strong family in my mind. They exude teamwork, courage, perseverance, and dedication to one another. Even the littlest guy in this family seems to be all about helping his older brother laugh and get through his days with many smiles. 

I've admired Shannon Carter and her beautiful family for several years. I've seen her daily posts and updates on Facebook about how her son's day was - heading to school, standing up, taking steps, smiling on holidays, etc. It's the little things that count in the Carter family - and I think that's a good reminder for all of us during the holiday season. 

Shannon's oldest son has some serious health concerns, which she deals with daily. Still, when you follow what she does with her kids, you can see her out and about taking her children to all kinds of events. Her biggest goal seems to be to help her children feel loved and as though they can do anything any other kids can do. I admire that so much. 


All images shared by Shannon Carter

In the spirit of giving
I asked Shannon to answer some questions for us, to share a little of her life with us so you can feel like you know her a little bit more. I have wanted for the Mommy Stories to adopt a family during the holiday season for a couple of years now, but had not gotten to putting into action. I want to thank Kate Stone and Aryn Wintle for putting the idea in my head this year. 

When I set out thinking of a family who could benefit from a group of moms love, support and kindness, I knew it had to be Shannon's family. If you can help out by even sending one item to this family, please do so! If you can't, but want to send Dakota and Jordan a holiday card (they love getting mail!) please do that. Just email me for their address and I'll get it to you. 

Let's make this hard working mother's holiday season a bit less stressful, filled with heartfelt Mommy Stories kindness. 

(wish list is at the end of this post)



1. What are your boys' names and how old are they? Give us 3-5 words to describe each of them.
Dakota age 7- happy, cuddly, strong 
Jordan age 3- determined, caring, funny


2. When was your son diagnosed with medical concerns, and what exactly does he have? What was that like hearing he would have some struggles along the way?
Dakota was referred to a pediatric neurologist when he was 5 months old after not meeting certain milestones. (These would be his first diagnoses- delayed development, hypotonia, failure to thrive) 

He had his first MRI at 9 months and a week later started having seizures. (Second diagnoses- uncontrablle epilepsy). He eventually was referred to a genetist at Boston Children's. At 3 years old he was diagnosed with a rare gene mutation(1 out of 12). Along with these, his other diagnoses are GERD, extropia, spastic quadriparesis, muscular dystrophy, and crohns. He is non verbal, non mobile and is g-tube dependent (feeding tube). Dakota sees 12 different doctors along with his PCP. 
It's hard hearing your child will have difficulties throughout their life. As any parent does we had hopes and dreams for our son. Although we didnt know the struggles Dakota would face at the time we knew we would get through it.
3. What is a typical day like for you?
We are all up by 6am, get Dakota hooked up to his feeding and make breakfast for his little brother. Dakota has a home health nurse that is at our house around 7. She helps get him ready for the day. Right now we are trying to toilet train Dakota, so every morning we put him on the toilet. Then he needs his vest treatment (chest pt), inhalers, daily medicine, braces, shoes, brush teeth, we put essential oils on him and he needs to be on the bus by 8. 

I also have to finish packing his school bag. Dad gets little brother ready for the day while I help with Dakota. Dad leaves for work and Jordan has school two days a week. During the day I clean, make never ending phone calls, and spend time with Jordan when he's not in school. There are days that Dakota has appts in Portland or Boston. Those days are long and tiring! 

Dakota is home around 3:30 then we start our night routine- play, dinner, Dakota's feeding, medicine, tubs, books, bed. I make Dakota's special ketogentic formula and we get things ready for the next day.



4. What have you learned from having a boy with medical concerns? What has this experience taught you?

When you have a child with any kind of medical concerns, whether that child can talk or not you learn to be their voice, their advocate. You as the parents are the only ones that know your child well enough to know what's right or wrong, what's working and what's not. This has taught us to live each day to its fullest. Allow Dakota to experience all the things a child his age should be, plus some. 

We thought the beginning of this journey was hard then things seem to be ok then the last two years have just been HARD again! Two years ago Dakota was transferred from York hospital to Maine Med's picu. They told us that he may need a tracheotomy and that eventually his lungs won't be strong enough. Then this past Fathers Day Dakota went into status (constant seizure state). Due to Dakota's uncontrolled seizures we have to constantly worry about this as well as SUDEP (sudden unexpected death in epilepsy).
5. What are you thankful for?

We are thankful for Dakota's health right now. That we haven't had a hospital stay since August.
6. What are some challenges in your life right now? How do you get through those things?
Dakota's seizures and health are always a challenge, we never know when they will land us in the hospital. 

Making sure Jordan doesn't feel left out can be a big challenge. So we try to do one on one things with him. He loves his brother and picks up when there's something wrong. Also having family time can be a challenge. When we consider a trip to Boston for an appt family time we kind of laugh at each other.



7. What is the best part about your life?
The best part of my life is watching the bond between brothers and their daddy grow. It's something that I will never take for granted.
8. How would help this holiday season make your life a little easier, less stressful, filled with more joy? What might you do with a little extra time and money this holiday season if others were to help you a little bit?

Having the whole family together for the holidays would be amazing. Working during the holidays is something that has always been a must in our house. Not exactly on Christmas Day but before and after. Since Dakota was born we have never been together for more then one day around the holidays. Knowing we have help would alleviate the holiday stress on top of our daily stress. It would also give us time together as a family.

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You can follow Dakota on his Facebook page www.facebook.com/dakotasride, or www.dakotasride.com.

Any donations toward Dakota's ride fundraiser can be made at http://anniesangels.net/our-families/dakotas-story/ by choosing "Dakota's ride" as your target donation.


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**CHRISTMAS GIFTS WISH LIST**

To donate to this family please email me at themommystories@gmail.com!
  • DAKOTA
    • Picking things out for Dakota this year has been tough as most of the stuff he needs is expensive. So we have just been telling everyone to give him things that he can go experience for example tickets to the movies, plays, outings. 
    • size 7 for both pants and shirts. 
    • He could really use a new winter jacket that is thin (makes it easier when in his wheelchair), leg warmers, mittens.
    • sneakers (size 1)  
    • an adapted switch (Big Red Twist - Accessible Switch-Set of 4 Colors)
    • Dakota loves music and listening to books on CDs. 
    • He likes the color green, things that spin, pretend play stuff and being outside.

  • JORDAN
    • size 3 for both pants and shirts. 
    • Boots-size 10 snow/rain
    • sled
    • Jordan is into Legos, cars, paw patrol, pretend play, sports, books, educational things. (really anything)
  • PARENTS 
    • For us any place to dine out is always a nice treat, gas cards, dunkin or Starbucks, Target/walmart, grocery cards
  • FOR ALL 
    • new sheets and comforters (twin sizes and a King)

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