August: a month of celebrations

Although we were extremely busy trying to balance getting the house complete, a newborn, and getting Jayden and Brooklyn in school, we still had time to celebrate!

August 7 our anniversary

The week of our Anniversary was spent working on the house with the CELP group. We were blessed to have students from Limestone University volunteer their time and help us paint the entire trim in the house, seed our huge lawn, pack and clean the old house, build the make a wish playset and bless us with their fresh energy as ours was depleting. Thank you to everyone who helped us feed the group and the Clarks for letting them take over your home for the weekend. Dan and Jill were amazing coordinating all the workers, thank you! It was the best gift ever!

August 8 Uncle Chads birthday

We love Uncle Chad. He has been living at Ken and Joans, so it has been nice coming home and seeing him because we have been crashing at Ken and Joan’s for some extra hands with the kids.  It is great seeing Chad wrestle with the kids, and take special care of Ellie. He is going to be such a great dad someday!  He has such a sweet, tender heart and is extremely thoughtful, although to most he seems reserved.  We adore him and are so thankful for him on his birthday!

August 26 Angie’s birthday

My dearest gal, Angie celebrated her big day today. She is an amazing friend and outstanding person. I love everything about this lady! She makes me laugh, catches my tears, listens well, helps with the kids, and is always up for a night out dancing! I couldn’t do this life without her and feel blessed to call her friend.

August 29 Bill’s birthday

Uncle Bill has been a great addition to the family. Rian’s husband is a tough police officer with a great heart. His love language is generosity and he would do anything for the people he loves. I think it was hard for him to enter in with Jayden in the beginning, but now, they have a special bond. He has taken a special liking to him and really spends quality one on one time with Jayden. It just warms my heart.

August 11-12

August is also crazy for me because it is my busiest time at work. I plan two retreats and a ministry fair. The retreats are for our freshman and our Juniors and are a highlight of my year. To say the least, it is always a great time and this year was no exception.  Sandwiched inbetween the chaos, though, it was hard to fully embrace the weekend.

To be honest, August…and the rest of 2012 is a big blur. We don’t know how we survived it, actually. A newborn, two kids with special needs, and building a house almost buried us. We are fried and ran on fumes for so long, now trying to update a blog in Jan 2013 from this far back is difficult. I really want to remember these days, however, there is little energy left to reflect back.  I feel like we are just no trying to fill our tank, so to speak. And, it is an adjustment actually having a ¼ tank to function with. We are still tired. Three years ago, the physical demands are not nearly what they were today. Although we have “adjusted”, it seems our physical needs for help are greater. In the beginning, everyone is offering to “help” but in the emotional aftermath of the diagnosis, there is very little to DO.  But now, there are sleepless nights, 3 people with diapers, and the ever looming truth of what Sanfilippo means. Overall, emotionally we are in a better place of coping and acceptance, we still struggle to make time for our marriage, friends, meaningful time with our family, and individual attention for our children that goes beyond the normal daily demand to meet their basic needs. I am sure this is a universal truth. The end of the day comes and we are tired. I want to unplug. Yet, the night never brings a full nights rest. Someone is always waking. The sun rises, and the day starts, but we are still tired from yesterday. We are on the up and up, though. I think we slowly are trying to make adjustments to our ever-changing daily demands while fighting for who we want to be.  Again, I think that is just part of the universal rat race. I have always struggled with slowing down. I don’t know what to do when there is actually space. It’s in internal struggle between shutting down and staying busy just to be busy.  I will probably dance this line my entire life.  And, I think it’s ok. I think that’s life.  It’s Jan 14, 2013 as I write, and I am happy. I am ok with the imperfect reality that I am. 

 

The Barnett family

The following is a Eulogy written by Valerie Barnett, a mother to to beautiful children who have truly left a legacy. They shared the same diagnosis as Jayden and Brooklyn, MPSIIIA, or Sanfilippo. Steven passed away this past December and Val posted this on facebook. The Barnetts are an inspiration to me. They have shown the power of the Holy Spirit in vibrant ways for the world to see and I had to share. It is an honor to say we know them. Barnetts, thank you for sharing and teaching us all!



First off we want to say thank you for being here today to show your support.

We get so many people that are amazed at our strength. They ask how can we cope with such overwhelming stress, suffering, and emotional pain. One thing that we have learned on this path is that suffering and emotional pain come from resistance. This world and everything in it is transitory, to cling to it brings suffering. It's cure is surrender and acceptance. Being solution-minded people, it was the hardest thing to accept that there was nothing we could do to fix the problem our kids had. But upon accepting that no action was possible, we rested in the peace and inner stillness that comes with surrender. We rest in God. So this strength that people are witnessing is the strength of our maker. When you realize that God resonates within you and that you can release all your pain to him, he can liberate you and bring you peace. This level of peace and strength does surpass all human comprehension. This is not to say we deny the pain and sadness. We do recognize it , but we learned to attempt to control how we respond to it. Trying to control where we let our thoughts roam and attempting to control which emotions we allowed it to trigger. Instead of pity, we feel pride, instead of anger, we feel gratitude, instead of sadness, we work towards contentment, instead of sorrow, we feel whole. You must remember that when life is difficult and you feel hopeless, you still have a choice. The choice to how you will emotionally respond to any situation is yours. We experience our emotions to the point we are able and surrender the rest to the one who can bear this burden with ease.

Besides the appearance of strength which is actually only evidence of our surrender, you may have witnessed our gratitude.
Melody Beattie said,
“ Gratitude unlocks the fullness of life. It turns what we have into enough and more. It turns denial into acceptance, chaos into order, confusion to clarity. It can turn a meal into a feast, a house into a home,, a stranger into a friend.”

First of all we are so grateful for our family and our friends. Your love and support has helped us so much to get through the trials of this past decade. We remember your deeds, big and small, and will treasure you forever! Thank you.

Along the way we have met some of the finest doctors, nurses, teachers and other professionals . We extend our gratitude to these folks and we hope they realize what an impact they have on this world. Thank you.

The next group of people we want to thank is a group which ironically we only know because we are all dealing with a terrible thing called MPS disorders and that is our MPS family. The moral support from our MPS families in unmatched as only they truly understand some of what we have gone through. We love you all so much and will always be there for you. Thank you.

Lastly, but most importantly, we want to express our gratitude to our children.
But, How can a person properly express this level of gratitude? Stephen Curtis Chapman expressed our dilemma in a song where he says,
“What I really want to say...
is what the sun would say to the sky
for giving it a place to come alive”
There are no words that can describe our gratitude to our kids.

Our kid's lives here on earth, including the times which they suffered so much from MPS, provided for us a place to come alive. A place to allow the love within our hearts to overflow into the world. For THAT we are eternally grateful.
I saw a quote once that said, “ If you think my hands are full, you should see my heart”
How true!

Steffany, Steven, and this experience has shaped us and brought light into ours hearts. We know the most pure, real and genuine love. A love with no expectations attached, A love with no attachment allowed. This is the greatest gift a person can give another. What a Gift! We have lived completely because we have given this love and because we have felt this love.

Steffany , you have the most beautiful and loving spirit. Your kind and tender heart has melted the hearts of so many and your loving spirit will live on to touch many more lives and make this world a softer place.

Steven, you have the most genuine and inspirational spirit. You have taught us all to be true to ourselves and not put so much emphasis on what other people think. Your pure and true spirit will provide us the courage to move forward without fear.

Thank you both for your contributions to our lives and to the lives of everyone here. You have touched countless hearts and made this world a better place.
Your spirits will live on!

We leave you with a quote from the book, Tuesdays with Morrie
“As long as we can love each other, and remember the feeling of love we had, we can die without ever really going away. All the love you created is still there. All the memories are still there. You live on-- in the hearts of everyone you have touched and nurtured while you were here. “