December 31, 2012

"The Mom I Would Have Been" by Dana Nieder

A GFPD friend/family member shared this today. This post, speaks of so many of the things that go through my mind on a daily basis. While the Lord has not yet added to our family and I don't have the "normal" mom experience and while I'm not sure when if every I will -- we continue to pray that someday the Lord would add to our family via adoption -- this mom beautifully captures what is going on in my heart.

The Mom I Would Have Been by Dana Nieder

December 30, 2012

Christmas 2012

Our family ended up having several Christmas celebrations, leading to nearly a week of presents, food and family. As we celebrated the birth of our Savior, my mind took me from the manager to the cross. Although I will readily admit that I don't understand everything, and I often have questions, I know that God is with me and loves me and loves my son even more than I can fathom.

The Christmas season reminds us that God loved us (humanity) so much that the story that He gave of himself and that His son who was born in the most humble of settings through the most unusual and completely supernatural way grew up to be the man who died on the cross, and rose again, defeating death so that we may have eternal life and relationship with Him!

But I trust in your unfailing love; my heart rejoices in your salvation. I will sing the Lord’s praise, for he has been good to me.
Psalm 13:5-6
Homemade Christmas cookies. Not pretty, but they taste okay!

Christmas Eve at Jeff's parents' house. Just visiting, opening gifts would have to wait.

Four generations of Marshall men

Christmas Day at my Grandparents' House

Christmas with the Jeff's side of the family on Saturday, December 29th.


December 24, 2012

Our 2012 Christmas Letter

Dear Family & Friends:
It has been a busy year for the Marshall family. We continue to be blessed that Jeff has his job at Caterpillar, which keeps him busy.  He traveled out of town for a couple of business trips, leaving Pamela and Ethan to fend for themselves a few times, but they managed. Pamela has continued her role as a stay at home mom, taken on more responsibility with the Global Foundation for Peroxisomal Disorders (GFPD), and continues to network with families of children with special needs and/or complex medical issues both at the local and state level. Ethan has been learning a lot, and while he continues to fight PBD-ZSD each day he is making progress in his own way and time.

Here is a recap of our year:
January: Ethan was hospitalized for RSV, learned to put the balls in his toy dinosaur all by himself, and began to combat crawl.

February: Ethan went to his first college basketball game (Millikin University’s “Pink” game that raises funds for breast cancer research), began being able to stand at the couch for a few minutes at a time, and played in a ball pit for the first time.
March: We met new friends at the Down Syndrome Infant Playgroup in Springfield; visited the Scovil Zoo park for the first time; lost a hearing aid; Ethan got his stander; started using the signs “eat” and “more” together, and Jeff traveled to Brazil for work.

April:  We attended Ethan’s cousin Cora’s second birthday and got to play in a new park; celebrated Easter; Ethan transitioned from his belly to sitting for the first time, and had play dates with friends.
May: We held the first annual Pancakes for PBD event to raise money to help us and other families impacted by PBD-ZSD attend the 2012 GFPD Conference - we couldn’t have pulled it off without the help of our friend Pat Drum and all the amazing volunteers; Ethan gave flowers to a girl for the first time when we met little Corey  and her mom Jeanine, a family from southern IL impacted by PBD-ZSD; began using his walker, with a sling, and started to be able to move himself around a little bit in it; broke a hearing aid; got a new prescription for his glasses (that he still won’t tolerate); and had to start having his right eye dilated every morning so that he would forced to use his weaker, left eye. We also had to said goodbye to little Corey who was called home to the arms of Jesus.

June: Took our first family trip to Allerton Park and saw a double rainbow on the drive home; went for a weekend in Clarksville, MO, where we met up with friends for one day and spent part of another day in Hannibal, MO, the boyhood home of Mark Twain; Pamela had all four wisdom teeth removed and developed dry sockets; and Ethan’s first two top teeth began coming in at the same time. Our family was also one of the recipients of the funds raised by the Mt. Zion Community Ice Cream Social. This blessing allowed us to pay some medical bills and purchase a walker for Ethan.
July: We celebrated Ethan’s 2nd birthday; Ethan got an indoor/outdoor swing, that he loves; began being able to stand with support for longer periods of time; and flew for the first time as we left for the 2012 GFPD Conference in Florida!

August: We had an amazing time at the GFPD conference. Thank you again for everyone who donated to GFPD for making this possible.  In addition to spending time with other families that understand the PBD-ZSD diagnosis, Ethan was seen by the top PBD-ZSD specialists in North American and the decision was made to increase the dosage of betaine Ethan takes daily (the hope is that the medicine will increase the function of Ethan’s peroxisomes). Ethan began pulling up and crawling up onto the furniture; and started “school” – a Tuesday and Thursday morning program called STEPS that is for children with special needs.
September: Ethan began crawling on his hands and knees; saw the endocrinologist for the first time and started taking a low daily dose of steroids due to treat adrenal insufficiency; and began to be able to “walk” behind a push toy while using it to support his upper body.  We also said goodbye to Pamela’s Great Grandma Molenhour who went home to be with the Lord.

October: Ethan pulled to a stand in his crib for the first time; began cruising along the furniture, got his new green walker; was a dinosaur/dragon for Halloween; and we got the okay to cease the daily eye drops.  We found out there was a slight improvement in Ethan’s VLCFA levels after a month of being on the higher dose of betaine, and we said goodbye to Jeff’s Grandmother Marshall who went home to be with the Lord.
November: Ethan learned how to play peek-a-boo; got his first haircut; had his first sedated hearing test (which  showed additional  hearing loss so his hearing aids were turned up); pulled up to stand at his Grandma Marshall’s piano all by himself and started “playing”; and pulled up on the baby gate for the first time.  We praised the Lord for getting to celebrate our 3rd Thanksgiving with our sweet boy.

December: Ethan went back on reflux medicine after several weeks of very little eating and drinking, and it appears to be helping; and despite fighting a cold for nearly a month has been in good spirits and has learned to put the coins in his treasure chest toy all by himself (we’ve only been working on it since July J).
As we reflect upon all the things that have happened this year we know that through all of the triumphs, struggles, celebrations, achievements, joy and sorrow, that the Lord has never left our side. We have felt His presence in so many ways this year. Although we won’t pretend to always understand what He is up to or has planned, we hold on to the promise found in Romans 8:28, "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Thank you to everyone who has kept Ethan and our family in your thoughts and prayers. They are greatly appreciated and we ask that you would continue to lift up our family as we continue this journey that the Lord has for us.

It is our prayer that during this Christmas season that you will feel His presence and that as we begin 2013 it will be a year in which we all grow closer to the Lord, and allow Him to work in new and wonderful ways in our lives.

Merry Christmas and Happy New Year,
Jeff, Pamela & Ethan Marshall
*Extra Special Prayer Request
Those who follow my blog know that we have had many little ones from my GFPD family pass away this year. While we had the honor of attending the memorial service for little Corey, there were many that due to the distance we were unable to go and embrace these loved ones in person. I would like to ask that you say a special prayer for all of my friends who are spending their first or another Christmas without their child, and for all families who live with the reality of a diagnosis that will always make them wonder, even while their child is still hear on Earth with them, if this will be the last. Thank you. 

December 11, 2012

Sometimes you just have to snuggle

I will admit, I look forward to Ethan's nap time. It isn't that I don't love my son or love being with him, because I do, but I think I can speak for most parents that most of the times babies and toddlers (and even big kids) just need a nap.

Ethan's nap time is typically the time in which I can get things done --- dishes, laundry, take a shower, do work for GFPD, and I admit that sometimes I just sit on the couch and relax for a bit. Today was a day that I had things planned for nap time. I've been working on a project for GFPD that needed to be completed, but Ethan didn't want to sleep today.

I let him cry for a few minutes before I went to rescue him when it became obvious that napping was not on his agenda. So, we curled up on the couch with a blanket and a silly Hallmark or Lifetime Christmas movie (don't remember which) and snuggled. Ethan isn't a snuggler, typically, so I just enjoyed the moment. I sang to him -- it was probably a good thing he had his hearing aids out -- and I told him how much I love him. We rocked a little, and I prayed for the millionth time for the Lord to heal my baby.

As Ethan fell asleep in my arms, I decided not to put him down. I knew I was right where I needed to be. Somehow I was able to successfully maneuver into a somewhat comfortable position while keeping Ethan asleep and there we were, for over an hour. My precious toddler, who is still truly a baby both inside and out, resting on my chest. Today nothing got done during nap time and that is okay. I know the reality of this disease, and that someday it will not be more time to get things done that my heart and soul will ache for.

I am going to steal this quote from the St. Jude's Children's Research Hospitals commercials - "Give thanks for the healthy kids in your life, and give to those who are not." So today, and everyday, please hold your kids (the healthy and the not so healthy ones) a little tighter and make sure you tell them how much you love them and thank the Lord for the time that you have with them.

And if you happen to have the ability to give a little extra to help make a difference for kids in need this Christmas season please consider doing so. There are many wonderful organizations that you can partner with to provide Christmas gifts for children whose parents' aren't able to this year and of course there are organizations such as St. Jude's Children's Research Hospitals, the Global Foundation for Peroxisomal Disorders (GFPD) and so many others that are trying find treatments and cures for children facing life threatening illnesses.

December 9, 2012

So proud!

As you know it has been a rough week for me. In addition to the two kids who are now with Jesus, there is a very little one, named Cash, who is presenting with severe PBD-ZSD (still commonly called Zellweger Syndrome) who needs our prayers tonight. Cash is currently in the hospital and his parents' have set up a Facebook page for him, in which they are sharing updates and prayer concerns. Please keep the Tweedy family in your prayers.

So, in the midst of all this sorrow, Ethan decided to brighten up our day. Tonight he decided that he was finally ready to start putting the coins in his treasure chest all by himself! We have been working on this for nearly six months. It may be a simple task for a typically developing child, but for kids with PBD-ZSD these are the type of things that we celebrate and shout for joy about! The fine motor and visual skills needed to do  something like this are things that Ethan has to work so hard to be able to obtain. This made our day!

December 8, 2012

Two more PBD-ZSD kids in Heaven

Two little ones with PBD-ZSD have recently left the arms of their parents for the arms of Jesus. Jackson, age 5, from Georgia passed away yesterday and today we got word that Millie, age 6, from Scotland passed away last week. My heart, and all the hearts of GFPD families across the world, are breaking tonight.

When we found out a couple of days ago that Jackson's homecoming was drawing near I wept. As I cried, Jeff held me tight and I cried, we prayed, and I cried some more. While my heart breaks whenever I hear of another one of our GFPD kid's passing, it is tougher on me when they are a family that I have met in person, and of course as I mourn for my friends' loss I also mourn for us and the reality of this ugly disease called PBD-ZSD that will someday take Ethan away from us is undeniable.

Jeff, Ethan and I had the pleasure of meeting Jackson's mom for the first time at the 2011 GFPD Conference in Nebraska, and then this summer at the 2012 GFPD Conference in Florida we got to visit again not only with Angie, but we also got to meet Jackson and his grandparents. Angie and her husband Travis loved Jackson with all of their heart and while I know that they know without a doubt that Jackson is with the Lord and that they will see him again, this hope does not diminish the pain that I can only imagine that they are feeling right now.

I've never met Millie's parents in person, just online, but my heart still broke when I heard the news today. I'd like to ask a special pray for their family as in addition to Millie's parents and the other adults who will miss her very much, Millie has several siblings who are mourning the loss of their sister as well.

I love my GFPD family and I cannot imagine this journey without them and while the majority of our sharing is online or on the phone, aside from the few short days of the GFPD conference when a number of us are able to meet together in person (all the time wishing that ALL of our families could be in attendance), we really do live this life together. This summer as we gathered and listened to the families who have been on this journey much longer than us, I almost had to hold back tears as they shared about the days before the internet and free long distance calls. When I start to think about how isolating it can be even now when it is estimated that only 80 kids are born with PBD-ZSD in the U.S. each year, I truly don't want to think of what it would be like if there was no real way for me to connect with another parent that "gets" it. We laugh, we cry, we share frustrations, challenges, and triumphs and in times like these we mourn together and for one another. Regardless of where along the PBD-ZSD our families are personally, we grieve and our hearts break when we learn of another family whose little one has passed away.

Jackson, March 3, 2007 - December 7, 2012

Millie, November 21, 2006 - December 1, 2012

Prayer Requests
  • Please pray for Jackson and Millie's families.
  • Please continue praying for all families who have lost children to PBD-ZSD and for those whose children are still fighting the PBD-ZSD battle day by day.
  • Pray that real treatments and a cure will be found! Please don't stop praying for miracles! We haven't, and although we know it may not be God's plan to miraculously heal Ethan, I'm not going to stop asking, but even if that doesn't occur, I will not turn my back on Him.
  • Pray that those who do not know the Lord would come to know Him and the peace and assurance that only comes from knowing Him as their personal Savior.
  • Pray that the Lord will continue to work in our lives and that He will give us the wisdom, strength and patience needed to be the parents Ethan need.
  • Pray that our lives would be a testimony and used for the Lord's purpose and glory.

December 2, 2012

A tough week or so

It has been a bit of a tough week around our house. This past week Ethan's "eating and drinking strike" hit a new all time low and we started off really thinking that it might be time that we have to start seriously talking with the doctors about when the right time to place a g-tube would be. Ethan has always had "issues" when it comes to eating and drinking, and has gone through numerous "phases" when he will just stop eating or drinking, but never really both at the same time for any real length of time. We know that if he stops drinking we can keep him hydrated and nourished by spoon feeding and if he stops eating we can keep him hydrated and nourished through his bottle -- but what is scary for us is when he refuses to do either. This is what we were facing this past week. Ethan hasn't really eaten well in months, but over the last week or so it had just gotten worse and worse and worse.

So, on Monday I began documenting all of his intake again. It is one thing for us to "feel' like his intake is down, but we really needed to know exactly how much, etc. I began talking with my network of special needs mommas -- local friends as well as my GFPD family. With their help we talked through lots of the issues that Ethan has about food, the cognitive, fine motor and oral motor skill delays that impact Ethan's ability to eat, the stress of the situation, his behavior during meals, and possible things to try, etc. The majority of children with PBD-ZSD have some issues with eating, although not all. Most of the things mentioned were things that we had already tried and/or are things that we do not have the ability do with/for Ethan at this point in time. The brainstorming of ideas and the support that I got from these women was amazing as they shared their own struggles and successes with something that so many take for granted ---- feeding your child. One thing that came back up several times was the concern that Ethan might be having reflux. Ethan has been off of his reflux medicine for nearly a year, but by Wednesday we were ready to do almost anything, so we put him back on it. We knew it couldn't "hurt" to try. I was sure it wasn't reflux. We've never had any real sign of reflux. Ethan was put on the medicine shortly after birth because of his difficulty eating and gaining weight, but he's never been a kid that really spit/threw up so we took him of of it nearly a year ago since he was eating so well. While there is no easy way to know if Ethan has indeed been suffering from reflux, we do know that by Friday Ethan seemed to be eating a lot better. Not great, necessarily, and his behavior in the high chair is still pretty horrible, but he was opening his mouth again for the spoon and even clapping his hands (signing "more") during meal time for the first time in weeks!

So, of course I feel like I need to pin a ribbon to myself that says "world's worst mom" because if it is indeed reflux then I could have been giving him medicine the last several months that would have given Ethan some relief, but minus some invasive testing that I do not want to put Ethan through, there is no way to really know, since he can not tell me what is wrong. Ethan's lack of communication continues to be one of the biggest daily struggles for me. He has no words, and very few signs -- he claps his hands, he can sign "eat" and "milk" although he does not use them often. So, besides crying there are very few ways for him to "tell me" what is going on. We continue to work with all of his therapists to try to give Ethan every opportunity to develop his communication --- sign language, talking, using objects, etc. but at this time we aren't seeing any improvement. On top of all of this is Ethan's newest "development" hair pulling. He is pulling his own hair so hard when he gets upset/frustrated/mad that he is pulling it out! Besides holding his arms and hands where he can't do it, which in turns makes him even more upset, we haven't been able to stop it. So, if you are someone who sees Ethan in person, you'll know why he is now missing more of what little hair he did have.

Thankfully, he is at the moment eating and drinking better. Still not great, but for at least the time being the scare seems to be over. We know that this will most likely continue to be a constant battle, but we feel so blessed that for now perhaps the reflux medicine has helped.

In addition to the really tough week or so in the feeding department Ethan is sick again! I got the call on Thursday while Ethan was at STEPS to come get him because he was feeling warm and was very flushed and lethargic. So I brought him home and he took a good nap and by the end of the night the yellow boogies were here in full force. We've been fighting them all weekend, and while at the moment it seems like we may be gaining ground in the boogie battle, we are far from winning the war.

There are so many frustrating things about the impact of PBD-ZSD on Ethan and our family and I will admit to having days in which I am completely overwhelmed by it all and on other days I think I've at least got it mostly together --- when Ethan gets sick, even with a common cold, the reality of PBD-ZSD hits me hard. In addition to all the challenges it causes Ethan and all the things that it steals from him and us as a family, I get so mad that a simple common childhood illness can very easily and quickly become disastrous for my sweet little boy. So, if you don't see Ethan and I again until Spring, you know why -- we are hiding from the germs. We are praying that this will be the winter that we are able to not be hospitalized. It isn't that we don't love the nurses on the pediatric  floor at St. Mary's but still, all things considered we'd really be okay not visiting with them this winter.

Since Ethan isn't feeling well he refuses to keep his hearing aids in, which is adding another layer of frustration to daily life in the Marshall house. With his hearing aids in he can hear pretty well, but without them he can't, and so hearing our voices, his toys, etc. aren't as enjoyable. I can't wait for him to feel better so that he'll keep those hearing aids in again! I want him to have access to the sounds around him.

Thank you for your continued prayers. We'll continue to keep everyone updated.