January 9, 2013
Goodbye 2012. Hello 2013!
We are just over a week into the New Year and so far it has been pretty uneventful. We have been spending time as a family and getting ready to get back to the “daily grind” following the holidays. We did have an exciting first on Monday -- Ethan pulled up to stand at the mirror in his bedroom for the first time! I of course didn't have the camera. Ethan also started back at school (STEPS) yesterday which also signaled the start back up of his therapies and the calendar is already filling up with doctor appointments as well.
I was ready for Ethan to start back up at school. Ethan was sick for the majority of November and December so between missing because of illness, appointments and breaks for Thanksgiving and Christmas, Ethan has had very little therapy for the last two months. Ethan generally tolerates therapy very well and we believe that he would not have, and we pray continue, to make such progress if it wasn’t for his amazing team of therapists (past and present).
2013 is going to be a big year for us in regards to Ethan’s school/therapy with a few changes occurring soon, and many more to come this fall. We are going to be increasing Ethan’s feeding therapy to once a week, starting this month. Ethan is eating purees much better but we has still had very little progress in moving him to more textured foods, self-feeding skills, drinking from a cup, etc. We added feeding therapy to Ethan’s treatment plan several months ago and since we will not have access to exclusive feeding therapy after Ethan ages out of EI this summer, we wanted to take full advantage of the opportunity to have as much help in the next six to seven months as possible for Ethan. The increased services will also provide me with the chance to continue to learn as many techniques/tricks as I can to help Ethan continue to work toward improving his feeding skills.
While we are increasing Ethan’s feeding therapy services, we are sad to say that his occupational therapy (OT) services are going to be decreasing, due to the lack of pediatric occupational therapists serving our area. Ethan has a wonderful OT, and she has been part of Ethan’s team for well over a year, but her case load is overwhelming and the waiting list for her services is in my opinion – disheartening. There are so many children in our community that need OT services but she just can’t see anyone and therefore in order to get some of the children who have been on the waiting list services she has had to cut back on services so that she can see more clients. Ethan has OT at school, and will be going from 30 minutes weekly to 30 minutes every other week. This is of course disappointing since Ethan has significant fine motor delays and other sensory issues that OT is addressing, but I understand why this must be done.
Ethan’s physical therapy, speech, hearing, vision therapy, and dietitian services will remain unchanged for the time being, although in the coming months we will be starting the transitioning process from Early Intervention (EI) to the public school system which will mean LOTS of changes!
Yesterday in the mail I received the booklet, “When I’m 3, where will I be?” from the state of Illinois. This booklet/workbook will help us walk through the transition process from EI to the school system. I will admit that when I read the title I was flooded with different emotions/thoughts. The hope sprung inside of me that said yes, I believe my son will be here with us to see his 3rd birthday and start preschool. Praise the Lord! I can remember all too well when I did not have the hope/assurance, due to his diagnosis, that we would even get to celebrate a first birthday with Ethan (this side of heaven). Another thought that went through my head was that NOTHING is a guarantee. None of us are guaranteed tomorrow, but when you have a child who is fighting a disease like PBD-ZSD this knowledge and the acceptance of it is so often front and center of your life.
I thought about the things that I hope and pray that Ethan will be able to accomplish in the next six to seven months prior to his third birthday – standing without any support, walking (even if with the use of his walker), increasing his ability to communicate, increasing his tolerance of his hearing aids (and maybe someday his glasses), continue developing his feeding skills – perhaps be able to learn to pick up and eat Cherrios or puffs and take at least a sip from a cup/straw or even be able to hold his own bottle, and stay as healthy as possible (healthy is a pretty loose term when you talk about children and adults who are fighting horrible diagnoses on a daily basis).
My heart also broke for so many friends who because of PBD-ZSD or other illness/tragedies do not have the opportunity to “celebrate” this season of transition with their child. Since Ethan’s diagnosis with PBD-ZSD at 28 days old we have belonged to a “world” and “family” that thankfully most people never have to take part in. As much as I wish more people “got it,” I am truly happy that most people don’t “have too.” In the last 2 and ½ years, because of my involvement in GFPD and other support networks for families of children with special needs and/or complex health issues, I have had the honor and privilege of meeting some amazing people. Some of my closest friends are those who I have because of Ethan and his diagnosis/challenges, and I praise God for these women and their families – blessed that we don’t have to be alone on this journey, but I have also seen so many of my “new” friends have to make decisions and experience things that no family should ever have too. My GFPD family and my local special needs community laugh, cry, complain, celebrate, and mourn for and with one another. The bond I have with people that I have known for such a relative short time is nearly indescribable --- we just all “get it” even if the details of our own journey and children’s path/future are different we find comfort, support, strength and friendship from one another in a world that doesn’t for the most part understand us, our children, and the journey we are on.
What is before us in 2013? What challenges? What triumphs? It is hard to say. I do pray that I will continue to always seek the Lord for guidance, wisdom, strength and comfort. I pray that through His power and grace that I would be more joyful this year. I struggle with being joyful. I am not hopeless – as a follower of Christ, I know that there is HOPE. I know and believe that this isn’t it, that this is a “temporary home” and that heaven awaits, but knowing and believe that haven’t in the last couple of years always shown as brightly from me as I hope that they will.
I pray that the Lord would use me for Kingdom work and that the desires He has put in my heart to bring families together, raise awareness for PBD-ZSD, fight for services and programs throughout IL for families of children with special needs, help in bringing the newborn screening for ALD and related peroxisomal disorders (including PBD-ZSD) to Illinois and other states, etc. would be blessed and continue to make a difference in this world.
While I know 2013 will most likely be filled with valleys and mountaintops, I know that God will be with us throughout it all.
Goodbye 2012. Hello 2013!