May 25, 2015

Kenna: A Documentary

This is a beautiful short documentary on Kenna, who is the youngest daughter of our dear friends Shannon and Vicky. The young mann who put this together is a cousin of Kenna's. Kenna's "best friend" Ginny, the oldest daughter of our friends Brant and Melissa is also highlighted. Ginny, as many of you know recently left the arms of her parents for the arms of Jesus, and she is dearly missed by all who knew her.

We consider ourselves blessed to have these families amongst some of our closest friends and in many was really consider them family. To learn more about PBD-ZSD and how you can make a difference in the lives of the children and families impacted by this disease, please visit the Global Foundation for Peroxisomal Disorders (GFPD) website.

May 6, 2015

Making New Friends

"Family isn't always about blood, sometimes it's about who is there to hold your hand and support you when you need them." ~ Unknown

As most of you know the GFPD has become a second family to us since Ethan's diagnosis. The GFPD family certainly isn't the type of family that most people would ever really "want" to be a part of, and while we always warmly welcome in new families impacted by this diagnosis I think I'm not overstepping when I say that we all wish we would have met under different circumstances. Nevertheless, I am always excited when I get the chance to meet and/or spend time with another family who "gets it."

Two weeks ago I got to meet a family who is new to the GFPD, who happens to live less than hour from us! The mom and I met for lunch and I got to meet her son, who reminds me so much of Ethan when he was younger. We talked about the "good, the bad, and the ugly" and hit it off right away. Her sweet little guy even took a nap in my arms. We are looking forward to getting together with their family for dinner soon and having our husbands and all the kids meet. They have a healthy typically developing daughter as well as their son who was recently diagnosed with PBD-ZSD. 

On Sunday afternoon on our way back from OK, we stopped in MO and meet another GFPD family! We've been connected via the GFPD parent group with this family for a while, but it was the first time that we had met in person. Our visit was pretty short, since we still had a very long drive ahead of us, but it was still so nice to meet them and look forward to seeing them again this summer at the GFPD conference. 

My Heart Breaks for My Friends [and for Ourselves]

In less than two weeks two precious little girls lost their brave battles with PBD-ZSD. Our family has had the privilege of knowing each of these families since we connected with the GFPD. We've even had the opportunity to meet them in person, which is a big deal when you are impacted by a rare disease.

Livi was 4 years old. We had not seen her or her family since the 2013 GFPD Conference in Lincoln, NE but we stayed connected on Facebook through our very active parent support group.
They were both completely worn out by the time both of our families had made the trip to Lincoln!

Ginny was 6 years old. We have met her family not only at past conferences, but several other times throughout the last 4 years. I was able to go and visit these dear friends back at the end of February after Ginny had been released from the hospital. It was such a sweet time together. Her mom and I drank coffee, laughed, cried, and prayed. I was also able to love a bit on Ginny and her younger siblings. Our families were also together back in October, when we met up in Kansas City with two other GFPD families.
Ginny, Ethan, Kenna, and Sam -- It isn't exactly easy getting kids with PBD-ZSD to "smile" for a group picture. :)

My heart hurts so much for my friends. I hate this disease. I don't doubt that their little girls are with Jesus, healed completely of this horrific disease and worshiping the One who created them, who knew them as He knit them together in their mothers' wombs (see Psalm 139:13-16). However, this human mommy heart still aches and grieves, and while I hold strong to the promises and hope that I have in Jesus, as my Savior and Lord, I still can't stop hurting for my friends and for us, because it has been a while since I felt the strength of PBD-ZSDs destructive power so strong.

Over the weekend Jeff, Ethan, and I traveled to Oklahoma to attend Ginny's funeral and celebrate her life alongside of our friends. Several other GFPD families were able to make the trip as well and I hope that we were all able to be of some comfort to the family. The prayer service on Friday night and the funeral service on Saturday morning were both uplifting and honored Ginny's life, and the loving dedicated parents, extended family, and all who were touched by her in some way. Ginny loved music, and one of the beautiful songs that was played on Saturday was Laura Story's "Blessings." I am so thankful that our friends share our faith in the Lord and have the assurance that Ginny is with the Creator of the universe, who loves her even more than they do (which is impossible to even try to imagine), and that one day they will be reunited with her in Heaven, in the presence of Jesus.

While Ginny, Livi, and so many other children affected by PBD-ZSD are no longer physically here on Earth, their memories and legacies live on on in the hearts of all who knew them.

Friends, if you do not have a personal relationship with God through His Son, Jesus, I pray that you would come to know Him. For more information please check out "It's All About Jesus!" and "The Story."

"I don't want to play outside!"

Over the last 4 plus years one of the most frustrating and heartbreaking things for me as a parent of a child with PBD-ZSD has been our lack of ability to communicate with our son. On a daily basis we can see Ethan's frustration and our own at our inadequate understanding of one another.

However, this afternoon after we got home from school and he was successful going potty [this is his most consistent successful potty time for us] I thought perhaps Ethan would like to go outside and perhaps use his walker, play in the grass, let me take some cute pictures of him outside, etc. Ethan however had very different plans. I took him outside and refused to stand in his walker, so he sat on the concrete driveway for just a moment before he started crawling back into the garage towards the van. I thought that he was going to try to get in the van in order to "tell me" he wanted to go somewhere. No, instead he pulled up on the van, cruised around the side and front of the van until he reached the steps that take you back into the house, and then he got down and crawl/climbed up the stairs and through the door [that I had opened when I figured out what he was doing]. 

Ethan clearly didn't want to be outside. As soon as we came back in the house he crawled to the living room and began playing with his toys. He knew what he wanted and he didn't care that his Mommy wanted some pictures of him "playing" outside on a beautiful May day. For those brief moments I felt like I could hear him telling me so very clearly, "I don't want to play outside!" 

Since Ethan "babbles" a bit and makes sounds (happy, sad, mad, etc.) I have a small idea of what Ethan's voice sounds like, but I often wonder what it would be like if he could talk and/or communicate more clearly through the use of sign language or picture cards. We have to guess at so many things with Ethan and he can't always express himself -- it is very hard on a mom when her child can't tell her what is wrong or what he wants. Most parents experience this frustration for a short period of months or perhaps a year or two before their child's ability to communicate gradually increases, but for us, this frustration and communication barrier continues to linger, and likely will for Ethan's entire life. We continue to work on finding ways to increase his communication -- he has an amazing team of teachers and therapists who are working with him and small/tiny gains are being made but they are indeed incredibly slow and limited. Yet, we will celebrate each accomplishment, no matter how insignificant it may appear to the rest of the world.