Sacrifices: Our Journey to the Marcus Institute
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What is a sacrifice? Well according to merriam-webster.com a sacrifice is either:
A. “Destruction or surrender of something for the sake of something [or someone] else.”
B. “Something given up or lost.”
When you are a mother, you give up a lot. This being my first child, I hadn’t really thought about it, but being a stay-at-home mom can be a sacrifice. Some sacrifice their job or having more money so that they can stay home with their child. Others give up their time, and the life they had before their child came along.
I don’t believe that being a mom is the only thing that should define you. Of course you should have other hopes and dreams too, but sometimes those are put on hold until your child is older or until another point in your life and sometimes you have to just let them go.
In the past few weeks it’s like it’s finally clicked with me. I can’t have everything I want. Something has to be put aside for later or be let go for good. As I blogged about it last week (Living with SPD), my son has SPD (Sensory Processing Disorder). We are only just beginning to understand all the symptoms and effects. But I am only just now understanding the time, work and sacrifices we are going to have to make to help him.
Although Adam has made great progress in his occupational therapy, and at times he has tried small amounts of food during his feeding therapy sessions, he has not progressed at all in his feeding therapy. He has been in therapy since last September and he does not eat any more foods then he did when we started.
Several weeks ago I called his therapist upset and at a loss for what else we can be doing to help Adam. He is sick all the time – literally every two weeks sometimes more. He barely eats when he is well, and doesn’t eat at all when he’s sick. Meal times are not any better, he throws food on the floor cried if he doesn’t like what I give him, and sometimes just sits there and eats nothing. It’s disheartening.
His therapist told me that she is doing everything she knows and there is nothing else she can do. She is now recommending that we get Adam on the waiting list at a place called The Marcus Institute in Atlanta for their intensive feeding program. It’s 7 hours a day for 6-8 weeks which means we would have to live there. And by “we” I mean Adam and I. My husband would obviously have to stay here and work.
According to the website the majority of children who go through this program, “…leave eating 19 foods, including at least four fruits, four vegetables, four starches and four proteins.” That is just huge. Right now Adam doesn’t really eat any of those and just the thought that this program might help him, gives me hope.
Everyone says it’s a good thing, and I know that and I do want to do this, but I am so scared. I have so many unanswered questions. Questions such as:
- Will Tricare even cover this?
- Where will we stay for those 2 months?
- Where will we get the money for this, plus for a place to stay, for food, and gas?
- If I am using our only car, how will my husband get to work every day, church, and to the grocery store?
- Do I really want to be apart from him my husband for another 2 months so soon after deployment?
And these are just a few of my thoughts… But after talking to my husband a little about it best we could over Skype, and asking his pediatrician what his thoughts were, we have decided to go ahead and get this process going to get him on the list. I am realizing that this is why God have me the word “Trust” for this year, because this is going to take more trust than I can possibly imagine. It’s going to take a miracle.
Adam’s pediatrician already submitted a referral to Tricare to see if they cover it. I called The Marcus Institute last week and the paperwork arrived today- 12 pages about Adam’s history and feeding. I also need to make copies of all his current therapy evaluations, his weight chart papers, and I am in the process of typing out all the food charts we have saved since last October that have what Adam has been eating at each meal.
There is a huge waiting list to get in so the the number one thing is to fill out this paperwork and get it all back to them. After that we will get a call to set up an appointment for an evaluation. After we hear from the insurance about their coverage and after The Marcus Institute goes over his evaluation and determines what he needs, then we will get on the list and go from there. I have heard from a friend that there is a possibility we might be able to stay at the Ronald Mcdonald house in Atlanta during those two months. They cover most of your food and housing so I am hoping that it might work out.
I am realizing how much work this is going to take, how much work it has taken over the past 6 months, but I know it’s not over. I have come to terms with the fact that Adam is a special needs child, and I am ok with that. He is my adorable little boy, smart, happy, and very loved by me and his daddy. He just needs a little extra help in some areas. And that is why God gave me a heart to be stay-at-home mom with him for a reason.
There have been things I have already had to give up and say “no” to because I realized I am just not going be able to do them. One of them was very very hard for me, but I have felt the Lord leading me to do so for awhile now, and I finally listened and understand why. Adam and his health has to come first.
I also learned that most likely we will have to sign him up for the EFMP program on the base. Which means that if Adam is on it then the military can’t move us anywhere where Adam can’t get help and therapy. It’s a good thing, but the problem is, once on it we most likely won’t be able to move overseas which is one of my husband’s biggest dreams. It’s a disappointment but we know that there will probably be future opportunities for that. We just have to wait and be patient.
God is teaching me a lot. and it’s going to be interesting trying to see what follows and what God does in our lives. I will be blogging about our journey to The Marcus Institute in the coming months and I hope that you will following along with us and watch and see what happens. We appreciate your prayers along the way.
Stay strong! Adam will improve and get the nutrition he needs. It is a long road, but in a couple years you will look back and see all the progress he made! And there are plenty of other moms who have been in similar situations who can empathize with you — I’m one of them. When it comes to the EFMP don’t listen to all the horror stories. We were afraid to sign up for it figuring it would mess with my husband’s career by limiting his bases. It hasn’t been so bad so far, but we’ll see how this move goes and the transition into a new school system. There may still be overseas bases available for you guys! And once Adam begins improving and needing less services your husband’s opportunities to go overseas will improve with it. Right now there are a lot of therapists and therapies. As long as where you PCS to has those resources available you will be fine. Like in our case we have to go somewhere where we have access to intensive speech therapy, an occupational therapist, an endocrinologist, and a developmental pediatrician.
Goodness. I hope things work out for the program, and that life gets easier soon!
Thank you! God has a plan, I know everything will work together.
I will be praying for you & your family for the strength & trust & patience this journey is going to require from all of you. God Bless
So sorry this is happening. You are a great mother and I really believe Adam will come out of this just fine because of God and because of the sacrifices you and your husband make for him. I will be praying about this situation… and praying you can get in with the Ronald McDonald house.
I am so glad that you have this hope and that you have such strong faith. You are such an amazing woman and mother! I will definitely continue to pray for your family and I look forward to following your journey.
This sounds like a very cool and very BIG choice. It’s not easy to know our lives won’t be how we invisioned them. My kids are all below the 3rd percentile, they’ve never seen the bottom end of a growth chart even though they were born average size. Their eating lists look, well, a lot like yours. I do feel for you greatly. Feeding clinics and the rest are new for me since my youngest son’s started his special needs programing. It’s a lot to take in and a lot of pressure on mom.
You are doing great! God has plans, big ones, for how He will grow you. I know that doesn’t help in the now, but you are in my prayers.