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 2^nd 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 3^rd 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.