It is not every day that we get to have "normal" family time in our home. We certainly do “special” things as a family like going to the wildlife park, the fair, or the steam engine show. But we miss out on a lot of the everyday stuff.
Most families share meal times as a chance to catch up and reconnect...we cannot do that. To the contrary, Shawn and I sometimes eat in shifts while the other occupies the kids, but for the most part we eat during naptime and after the kids go to bed at night. Yup, that’s right – we eat dinner between 7:30 and 9 every night – depending on how long it takes me to prepare it.
There is an added layer above and beyond the food issues in our home – we have twins. There is so much to do and with two toddlers there is little time to do it all. For this reason Shawn and I are often off and running in two different directions. He runs off to school two evenings a week. I run off to do errands (or just get away!) some evenings and work my 4 hours per week on Saturdays. Because the kids immunotherapy treatment requires them to be free of viruses and the like (and away from exposure to chemicals including perfumes) we swap church services on Sundays. Shawn goes to the first while I stay home with the kids. Then I go to the second.
We have very little NORMAL family time. Sometimes this is really hard to deal with. This weekend I realized just how much we are missing out on in this area.
We had so much fun. We spent Sunday afternoon into dusk raking leaves onto a huge tarp and pulling them to the street to be picked up – the three babies (cousin K) riding IN the pile! Afterward we came inside and enjoyed each other’s company. Shawn and I sat on the couch together while the kids played around the coffee table. With all the running in different directions, I can’t remember the last time just sat together like that WHILE the kids were still awake.
Looking at it now - it was bitter sweet. Much of the “normal” family time stuff is impossible for us.
Here we are – days away from Thanksgiving and trying to figure out how to celebrate without food being the main focus (or any focus for the kids). I guarantee that unless you have lived through something similar to this you can’t truly understand it. We certainly don’t have it so bad. The kids are growing and in overall good health. They certainly aren’t in the hospital for a feeding tube and waiting to find out if they will need a liver transplant like one mom I have met. We are truly blessed. Still there is a stinging in my heart for all that my kids are missing out on. There was a time when we could put them at a table full of food and give them their medical food and they didn’t notice the difference. Not so anymore. Now they cry, beg, and temper. This sucks.
Honestly, I know we need to “get over it” to a certain extent – and we do…every day. I practice one of my favorite things – radical acceptance. Have you ever found yourself thinking about something and just shaking your head “no” or thinking “why?” This is when the art of radical acceptance comes in. When your head is shaking “no,” physically shake it “yes.” At first it really means nothing, but in time it actually helps. Then we put one foot in front of the other – creating new traditions for our children.
I am thankful for all we have. God is God and I am not. Although I am not there yet – today I am shaking my head “yes.”
Tuesday, November 23, 2010
Sunday, November 7, 2010
Put In My Place...There is Hope
I have been put in my place. The message was clear for quite some time leading up to the “big push," but I managed to get pretty far off track.
What was the message? “Be still.”
I had received this directive on many occasions. I actually found peace and comfort in this instruction. For the first time in the twin's lives I was given permission to stop researching, advocating, fighting, and so on. In moments when I waivered and wondered if I was truly supposed to be waiting, I would meditate on Psalm 127:2; “…he grants sleep to those he loves.” I would lay in bed and thank God that He would be “working on this” while I rested. I found myself in the center of the peace that surpasses understanding.
Then one day I discovered an online support group for FPIES families. It was amazing. For the first time EVER I realized that we were not alone in this super rare condition. There were others. The support was amazing, and there was a wealth of knowledge and research avenues to tap into. Suddenly I felt this urgency to work harder, learn more, advocate more, search more, and to find answers. Some of the amazing moms from the group talked a lot about CHOP. One truly amazing mother suggested that since I lived close I should take the kids there. I was on a mission.
I labored hard to get appointments set for the twins with the GI department at CHOP. Since there was a 9 week waiting period I asked for prayer. I requested prayer for a quicker appointment, and many people prayed…to no avail. One of the moms suggested going to allergy first since it was only a 3 week waiting period. With every SINGLE step I was met with resistance. I was forced to beat down doors and jump over hurdles in order to get to both appointments at CHOP. The result? Nothing – well a horrible experience with both departments. Not even worth going into…except to say that I began wondering if I was pushing through doors that God was closing.
A couple of weeks ago God brought me another “message” – "Be still (wait) and know that I am God.”
Since then I have been doing just that. Shawn and I prayed about whether to cancel the next appointment (with the Lyme specialist) and ultimately we sought council from a trusted pastor and decided to WAIT. I decided that I would have to step back from the online support group since it had distracted me so much (I was consumed with it). Instead I have been praying and doing my best to have faith in the promises that I KNOW God has made.
During this time of waiting I have received confirmation on more than one occasion that this is the right thing.
Today Shawn and I were chatting before heading into the grocery store. I told him that I am just trusting that we are supposed to be waiting – that I am trusting in what God has promised – that there will be a light at the end of this tunnel. Shawn agreed – especially when I said; “It’s not easy.” Honestly some days it is not difficult to rest in His promise and there are others when I wonder if I imagined it all.
We worked our way through the store. Shawn and BabyM walked around the store while BabyR (who only wanted mommy) and I headed off to the produce department to get bananas for daddy’s lunch. BabyR asked for the one food he is allowed to have. I had no intention of buying carrots today, but when your child who has only ONE food asks for that food in the middle of a sotre FULL OF FOOD your heart breaks to say anything except YES. At the checkout BabyM and BabyR were munching on their baby carrots. Since they have not been allowed to eat they don’t really know how to chew and swallow. They are in feeding therapy, but at this point they mostly shred the carrot, chew on it for a while and then spit it out. Of course they did this very thing in the store – what a mess – and right in the checkout line. The checkout woman offered a paper towel and made some friendly comments about the mess. For the sake of the kid’s emotional health I had decided not to announce their condition whenever it comes up. Instead I let it be what it is – others just have to deal.
As the friendly woman bagged the bananas she asked, “Why didn’t they have banana since it’s easier to eat?”
We had been chatting about them while she worked on our order, and she seemed really nice. For some reason I went against my recent decision not to talk about the kids condition with people who are unfamiliar with it. I nonchalantly answered, “They have a condition that prevents them from eating foods – carrots are their only safe food and otherwise they take a medical formula.”
“Oh I know exactly what you’re talking about – my sister went through the same thing with my nephew.”
“Yeah right,” I thought. I have experienced people whose child has multiple allergies that think they can relate to the twins condition. I smiled and said, “Oh wow. Yeah it’s hard.”
She asked a couple of other questions and then went on to describe her nephew’s situation. Some of the details were different, but it was much the same. Clearly her nephew COULD relate.
“My sister is very familiar with the medical formula,” she said. “He was on nothing but that until
a few months ago.”
“Really – what condition does he have?”
She didn’t know the answer exactly, but perked up when I asked about Food Protein Induced Enterocolitis Syndrome. She thought that sounded familiar. I told her that we were just trusting God with it all and just waiting.
I could see some of her defenses come down as she answered; “We went through that with my sister. We prayed over my nephew many times. Now he is drinking regular milk and eating whole wheat cereal. So there is hope."
“That is amazing,” I answered. I could feel tears welling up in my eyes, but I held them back.
We chatted for a few more miunutes about the twins and her sister. After a few minutes she reached over to the register tape and pulled off a peice of scrap paper. Retrieving her pen she smiled and said, “I have a special sensitivity for children with special sensitivities; can I take their names and add them to my prayer list?”
I gave her their first names and told her that I was going to cry. She had no idea that God was using her to confirm his promise in my heart.
“There is hope.” I know with all of my heart that He is working this all out. “There is hope…we will soon see the light at the end of this tunnel.”
What was the message? “Be still.”
I had received this directive on many occasions. I actually found peace and comfort in this instruction. For the first time in the twin's lives I was given permission to stop researching, advocating, fighting, and so on. In moments when I waivered and wondered if I was truly supposed to be waiting, I would meditate on Psalm 127:2; “…he grants sleep to those he loves.” I would lay in bed and thank God that He would be “working on this” while I rested. I found myself in the center of the peace that surpasses understanding.
Then one day I discovered an online support group for FPIES families. It was amazing. For the first time EVER I realized that we were not alone in this super rare condition. There were others. The support was amazing, and there was a wealth of knowledge and research avenues to tap into. Suddenly I felt this urgency to work harder, learn more, advocate more, search more, and to find answers. Some of the amazing moms from the group talked a lot about CHOP. One truly amazing mother suggested that since I lived close I should take the kids there. I was on a mission.
I labored hard to get appointments set for the twins with the GI department at CHOP. Since there was a 9 week waiting period I asked for prayer. I requested prayer for a quicker appointment, and many people prayed…to no avail. One of the moms suggested going to allergy first since it was only a 3 week waiting period. With every SINGLE step I was met with resistance. I was forced to beat down doors and jump over hurdles in order to get to both appointments at CHOP. The result? Nothing – well a horrible experience with both departments. Not even worth going into…except to say that I began wondering if I was pushing through doors that God was closing.
A couple of weeks ago God brought me another “message” – "Be still (wait) and know that I am God.”
Since then I have been doing just that. Shawn and I prayed about whether to cancel the next appointment (with the Lyme specialist) and ultimately we sought council from a trusted pastor and decided to WAIT. I decided that I would have to step back from the online support group since it had distracted me so much (I was consumed with it). Instead I have been praying and doing my best to have faith in the promises that I KNOW God has made.
During this time of waiting I have received confirmation on more than one occasion that this is the right thing.
Today Shawn and I were chatting before heading into the grocery store. I told him that I am just trusting that we are supposed to be waiting – that I am trusting in what God has promised – that there will be a light at the end of this tunnel. Shawn agreed – especially when I said; “It’s not easy.” Honestly some days it is not difficult to rest in His promise and there are others when I wonder if I imagined it all.
We worked our way through the store. Shawn and BabyM walked around the store while BabyR (who only wanted mommy) and I headed off to the produce department to get bananas for daddy’s lunch. BabyR asked for the one food he is allowed to have. I had no intention of buying carrots today, but when your child who has only ONE food asks for that food in the middle of a sotre FULL OF FOOD your heart breaks to say anything except YES. At the checkout BabyM and BabyR were munching on their baby carrots. Since they have not been allowed to eat they don’t really know how to chew and swallow. They are in feeding therapy, but at this point they mostly shred the carrot, chew on it for a while and then spit it out. Of course they did this very thing in the store – what a mess – and right in the checkout line. The checkout woman offered a paper towel and made some friendly comments about the mess. For the sake of the kid’s emotional health I had decided not to announce their condition whenever it comes up. Instead I let it be what it is – others just have to deal.
As the friendly woman bagged the bananas she asked, “Why didn’t they have banana since it’s easier to eat?”
We had been chatting about them while she worked on our order, and she seemed really nice. For some reason I went against my recent decision not to talk about the kids condition with people who are unfamiliar with it. I nonchalantly answered, “They have a condition that prevents them from eating foods – carrots are their only safe food and otherwise they take a medical formula.”
“Oh I know exactly what you’re talking about – my sister went through the same thing with my nephew.”
“Yeah right,” I thought. I have experienced people whose child has multiple allergies that think they can relate to the twins condition. I smiled and said, “Oh wow. Yeah it’s hard.”
She asked a couple of other questions and then went on to describe her nephew’s situation. Some of the details were different, but it was much the same. Clearly her nephew COULD relate.
“My sister is very familiar with the medical formula,” she said. “He was on nothing but that until
a few months ago.”
“Really – what condition does he have?”
She didn’t know the answer exactly, but perked up when I asked about Food Protein Induced Enterocolitis Syndrome. She thought that sounded familiar. I told her that we were just trusting God with it all and just waiting.
I could see some of her defenses come down as she answered; “We went through that with my sister. We prayed over my nephew many times. Now he is drinking regular milk and eating whole wheat cereal. So there is hope."
“That is amazing,” I answered. I could feel tears welling up in my eyes, but I held them back.
We chatted for a few more miunutes about the twins and her sister. After a few minutes she reached over to the register tape and pulled off a peice of scrap paper. Retrieving her pen she smiled and said, “I have a special sensitivity for children with special sensitivities; can I take their names and add them to my prayer list?”
I gave her their first names and told her that I was going to cry. She had no idea that God was using her to confirm his promise in my heart.
“There is hope.” I know with all of my heart that He is working this all out. “There is hope…we will soon see the light at the end of this tunnel.”
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