May...

May has been an interesting month...
The last 2 weeks included two birthdays, homeschool evaluations, 3 kids to the dentist and a very short trip to Ohio.



My sister and her husband were celebrating their first pregnancy after 6 yrs of marriage. But sadly Baby Theodore did not get to live very long here on earth. We packed up the house in 3 hours and headed to Ohio to be with them. 

It was a very long 7 hour drive. Very.Long. with all 6 kids. We stayed at The Barn Inn one night. we had planned to go to my parents but supper, but it was really humid and they have a dog in the house. So we ended up ordering late night pizza to be delivered to our vacation house for dinner.

J and K had a beautiful service for baby Theodore. My kids think he must be playing with his uncle in Heaven. 

We drove to Ohio Friday morning and returned home Saturday evening, because Bubbie was reacting to something in the vacation house. He was wheezing, coughing and generally irritable and miserable! The drive home was not nearly as torturous as the drive to Ohio. But by Sunday morning, 5 of my kids were sick with fevers, coughs and colds.

We regrouped and recovered. Then we celebrated birthdays. Bubbie turned 2. We made a dairy, egg and protein free chocolate cake that he loved. I made a smiley face with allergen free chocolate chips, he was quite delighted and ate all of the chocolate chips before anyone else got cake!

He loves to look at books and was quite happy with his collection of birthday books. 

We tried some new hairstyles. She and I were both delighted with how these twists turned out!! She is tired of braids and straight hair... so this was a fun new style. 

Then we had another birthday. This time it was gluten free cake with peanutbutter and honey icing. Lee's favorite! 

For his birthday, he wanted to camp. But as we all know our family has really had to adjust to having a highly allergic child, so we decided to camp out back. 

My landlords/next door neighbors have a little cook out area on the corner of the two properties. We got permission to use it for the weekend. 

We put up the tents, made dinner in the charcoal grill. Because Bubbie is allergic to smoke.... We made dinner, pulled down the tents and dashed inside. Just as it started to pour down rain.
My amazing friend Ada had joined us for this birthday camp out. She knows how to make anything fun. She had brought a game and some glow in the dark toys.

We watched a movie and played lots of games. Ada and the kids slept in the living room. Sunday we had breakfast then played games all day long!! Once again life did not go as we had planned but the kids had a total blast and the birthday weekend was saved.



The last big thing we did was homeschool evals. I am so thankful for an evalautor that understands the importance of working with kids, the calling of homeschooling. She was so encouraging as I worried about the progress or lack of that I see with my kids.

We have another 2 weeks of craziness then school should slow down. Three of the kids had dental appointments. Two need extractions and sealants. So we get to make 4 more visits for those two kids, plus the other 4 kids need dental exams. Plus we have a big appointment coming up for Bubbie...

Food Issues

It started with formula. We tried the standard Good Start formula. It did not work well. We had lots of screaming and gas. We switched to Good Start Soothe, which worked but not great. So we switched to Alimentum. We tried soy in there at some point but that did not work at all.

So since he has been 6 months old, Bubbie has been on Alimentum. It continues to be his primary source of nutrition.

We started out trying the baby foods. We knew because of his digestive issues that we would need to be careful. So we tried one new food a week, 1/4 tsp on day one, 1/2 tsp on day 2 so on... 1/4 tsp of green beans, squash, peaches, peas and baby cereal all gave us hours of screaming. The kids begged me to stop feeding him.

It was a slow tedious process. We tried 4 foods per month on average, failing most of them. I spend an awful lot of money on expensive organic foods that he would eat 1/4 bite of and then never eat again. Sometime I would try a food then he would get sick on day 2-4, and we could never be sure that it wasn't just a virus.

My least favorite reaction was/is sleepless nights. When  Bubbi had foods that caused him discomfort it was not unusual for him to wake 3-7 times a night. Many a night I saw every hour on the clock.

Currently his favorite foods are apples, carrots, pretzels, potatoes, lamb, strawberries, broccoli and watermelon. The only milk he can drink is coconut milk, but he is not a fan of that. The only meat he can eat is lamb. That is also his only source of protein at this point.

We discovered that he is allergic (IgE) to fish and peanuts. Thankfully so far it does not seem to contact based and the rest of us can still eat peanut butter as long as we are careful to make sure he doesn't eat it. He carries an epi pen for these allergies. Yes, I taught all of my kids how to use an epi pen and to know the signs of an allergic reaction.

We continue to try new foods. Some are great. Some like the sheep milk yogurt start a change reaction of symptoms that leave me stumped.

We did some allergy testing when he was really young. It showed no IgE allergies. We did skin testing and again no reactions. However, his allergist and GI feel that his complicated health is not going to fit into their mold. They both have told me that they feel they will learn from him. It is discouraging and encouraging to hear this from specialists.

We did the breath test (this was a painful tearfilled hours of torture for him and me!) and discovered that he is fructose intolerant. But once again it is not typical because he can eat some fruits. Apples are normally a big trigger for fructose intolerance, yet it is his favorite food.


He is def lactose intolerant. We do not need any tests to determine that! We tried a toddler formula for him. But he reacted pretty severely to that.

It gets harder as he gets older. He wants to eat what we are eating. He loves to eat. I have from day 1 encouraged him to try new and different textures etc.. some of the food choices have been based on texture not nutritional value because I wanted to avoid eating sensory issues.

Some days he throws a fit because he wants to eat what we are eating. Some days he just sits quietly as we eat. That breaks a momma's heart. We try to find special treats that he can eat. It takes work and creativity. His meals must always be cooked separately. He is thrilled for his cup of ice at Mcd's when the rest of us get burgers and fries. He loves his carrots and broccoli when we eat chinese.


He is generally a very sweet child with a kind and gentle heart. Except when he as foods that make him feel miserable, then he becomes an angry, aggressive, whiney, clingy, mean child. He hits, kicks, screams and doesn't sleep. We can only imagine how miserable he feels.

I have joined several facebook support groups. I have learned so much from other moms. There are several other possible dx and by joining fb groups focused on those issues, I have been able to determine what he needs.

 People look at my pudgy toddler and are shocked that he eats only 10 or so foods. Generally people are respectful and don't feed him. Everyone has advise and ideas.

I have tried so many things and read so much info. Sometimes we just take a break. We stop all foods. We just give him his bottle. We all just need a break from food. Then we find motivation again and try again.


When we leave the house we must always carry an epi pen, an inhalor, asthma meds, benadryl and whatever food he will need. We get  a lot of flack for still allowing him to have his bottle. He can drink from a cup. He can eat table food. But the bottle is his source of nutrition.

Bottomline, this kid is complicated. We have had to alter our entire lives to adapt to his needs. My big kids have made sacrifices for his benefit. They have learned so much about compassion and sacrifice. They know the signs of an asthma attack, allergic food reaction, GI reaction, and are extremely protective of him. They are extremely protective of him and are not afraid to speak up for his needs in group environments or at sitters. Because forever families are forever and they love no matter what.

Spring time

Some happy pictures to celebrate our beautiful spring weather..


The chickens love being outside in the fresh air... 

Pool area turned into a sandbox..

hanging out in my favorite spot

watching airplanes high in the sky

fixing fences for Daisy

babies.. 

neighbors... 

flowers.. 

homeschool education... 

Baltimore, Ferguson, One Drop At a Time.

With all the chaos in our world today, it feels impossible to change anything. But today my children and I are going to visit our local police station with cookies for the officers. I want MY young, black men to trust and respect officers. I want the officers to trust and respect my young men. I want my fatherless, young, black men to fight for justice with their God given tools. I want them to NOT feel angry and powerless. I want them to be promoters of peace and respect for all authority. This starts at home with me... and my examples. Today I will make a tiny drop of difference. Join me

.

I also love this video by Tony Evans!

http://go.tonyevans.org/baltimore

Allergies and Eating My Words...

I used to laugh at all those paranoid moms. Those moms who had kids allergic to everything, the hovering mom who never let their kid out of sight.Then I became one.

It all started out simple enough. Colic, reflux, and some minor breathing issues. But then we had hours and hours of crying from about 6 weeks on. 5-6 ER visits before he was a year old. Specialists from the Children's hospital...


Because Bubbie was a foster child, I first had to take him to the clinic rather then my pediatrician.
The clinic did not hear my concerns. Thankfully I had a nurse friend who was able to walk me through the medical protocol. With her assistance and some amazing caseworkers who pushed hard we were finally able to get an appointment  with a pulmonary specialist at the closest Children's hospital. I was not allowed to go to the hospital of my preference because it would be to far for the biological parents.

However, before our appointment, we had another ER visit with breathing problems. The amazing ER Dr wrote a referral for GI and a pediatrician  for us. He also gave us a Dx of reflux. The ER Dr's referrals were an answer to prayer as it finally allowed us to see the additional specialists we needed.


So now we were at the 6 months mark with a foster baby who cried for hours, slept no more then 2 hours at a time,  needed special formula and had the dx of asthma (clinic had told us not possible to dx an infant). He also was on meds for reflux, and had possible FPIES.

I was on the fast track to learning about asthma and food intolerance. I joined several  fb support groups and picked the brains of my friends who had kids with similar problems.

The specialists were not exactly helpful, very little testing was done. Everyone was happy to let me just handle it. I had no clue what I was doing. This was a foster child, I was accountable to not only my agency but a rather unforgiving CYS caseworker. I worried that I would miss something important with this Bubbie's health.

 I spend many, many nights rocking a crying baby for hours, quite often my tears joined his. During this time I was extremely grateful for several close friends, one who was a nurse with kids who had similar food issues offered valuable advice, the other a friend who had a husband with severe asthma who also had excellent advice,two other friends always willing to drop everything and come help when I felt overwhelmed.

The winter cold that was minor issues for other kids turned into pneumonia, 3 times for my little one. . I was giving breathing treatments around the clock. I was constantly monitoring breathing issues, watching for the signs that I should go to the ER. I was thankful for a neighbor friend who would come in the middle of the night to stay with the other kids.



He even had a ride in an ambulance before he was 2.

We learned some little tricks. Things like warm steam baths with eucalyptus oil and chest PT to loosen the mucus. We found a vapor rub that kept his oxygen levels up. Each ER visit added to our knowledge. Friends recommended meds that worked for their kids. Soon we had quite the variety of meds, all prescribed by different Drs. It was confusing and concerning to me.



Finally as we were further along in the fostercare side of things, I got permission to seek a second opinion at a larger Children's Hospital. We were able to get in to see GI. It was a long day in a large city. The caseworker accompanied me to the long first appointment. We were given hope. The FPIES diagnoses was thrown out. Fructose Malabsorption and Lactose Intolerance were the new diagnoses after some awful tests!

I found that having my child seen by the specialists during his sick times really helped us. Because Bubbie is a chubby, cute, out going little guy no one really believed me that he had the issues he did.

The answer to a prayer with our allergist came after a long hard night. I debated several times if I should just go to the ER before morning. But I knew having the Dr see his breathing would help more then yet another trip to the ER. This Dr (whom I LOVE!) listened to my sick little boy. She gave me a referral for a Pulmonary Specialist and an ENT. She also gave us a prescription for a very large dose of the much hated steroids. For the first time I felt like someone heard me and understood why I freak out. She saw the labored breathing etc...


This Dr has been a great help. She really helped me figure out what Bubbie is allergic to. She gave me an Epi pen, an allergy emergency plan and an asthma plan. She communicates with GI and nutrition to help us connect the dots between his breathing issues and his eating issues. She went over all his meds. She listened to me on what works and what doesn't. She explained why things worked the way they do. She helped me find the best solutions for his allergy/asthma issues.

Finally at almost 2 years old we have an allergy and asthma plan that works. We still have flare ups. We still  have long sleepless nights. But I am confident in my tools. I know that I have a good team just a phone call away. I can check oxygen levels and listen to his lungs at home, I know the danger signs.

My next step is to find answers for the food issues. Watch for a post on that....

                                                   

Old McDonald Had a Farm..

I have decided to take some time to just regroup and recover. This past 3 months of paperwork and stress, in addition to the LONG winter gave me a bit burn out. I needed to recharge and rest.


So since the adoption, we have been relaxing. We are maintaining a strong school schedule, while doing a little bit of outside clean up, which is theraputic for me. I love diddling around outside.


We had to babysit yesterday but not the rest of the week. I am thankful for this break. I took a long nap while Bubbie napped today. Ahhh, it has been a long time since I did that. Unfortunately, my big kids took advantage of that time to get into some scraps. After a firm scolding on being trustworthy without direct supervision, they decided to try to earn that lost trust back by mowing for me!

I had a phone IEP, because at scheduling time, I had thought I would be babysitting today. Nesiah is doing well. Exceptionally well. We are so happy with her progress.

The kids have been enjoying the outside. I bought a bag of tennis balls, which have been put to good use the past week. The kids also bike every day. We live on the side of a hill. I can see for miles and miles. But best of all with the intersecting roads, the kids can ride for a good, hilly (very low traffic) mile, all within view of my kitchen windows.

We have planted our garden and sprayed weeds. Flower beds were cleaned out, all in the last week or so. It is so therapeutic for me.


We are also working on some animal projects. I actually have time and energy to get out to the barn and do extra work. The kids always do great at taking care of their animals. But I try to get out and check to make sure things are they should be. My kids are incredibly responsible with their animal care.

We currently have 18 chickens/roosters that Elizabeth takes care of.  We have 4 sheep, a steer and a pony that David takes care of.  We also baby goat and a golden retriever that Lee cares for. The girls also have a Bichon that they care for. Fayth had been responsible for the baby goat but lost her right to take care of her. Bubbie loves all the animals but especially the chickens and the baby. He insists on going to the barn every single day with the kids.


They love when I come  outside and we play with all the animals. I rarely have time or energy lately for fun stuff like this. Today was the perfect.

It is not all fun and games on our farm. Animal care can be hard. Animal care can be disgusting. But it is sooo valuable for our kids.

Our steer has not been gaining well and on Sunday was really sick. I did some research and thought I knew what was wrong. I prayed for wisdom and decided not to call the vet. But Ben get getting sicker and sicker... we were afraid he would die. So we prayed. We gathered together and prayed that God would heal our sick steer. He did. Ben was still off, but not looking like he was on his deathbed by Monday morning. I was able to stop by the farm store where an old timer gave me some tips on how to manage his care. He is well on the way to recovery now! We praise God for caring about steers and healing him!!


Yes, I know it makes us strange that we pray for steers. But we believe that God cares about every detail of our lives. He cares about helping single moms feed their kids. He does still work miracles. We attended a really good mission conference at a local church recently. It was so inspiring and encouraging. Here were people who did crazier things then us. They saw God work in ways we can only imagine. My kids sat spell bound for 2 hours, as the speakers shared stories! It has often been discussed since that. How God works... How He cares.... why He calls us to be crazy.. why He cares about every aspect of our lives.


We have an entire week ahead of us with no babysitting, no real responsibilities other then really working towards the goal of finishing school strong! I plan to do some cleaning, some animal care, some training with the kids.


What do you have planned for the summer?

He is adopted!

Some day I will blog our story. This story has God's fingerprints all over it. All over it. It was a long hard journey, but Moses is now adopted.



I got the phone call and 24 hours later I had an emergency kinship license and a 6 lb baby boy...

He was such a tiny peanut. 

We were so blessed that God gave us yet another April adoption date. It is almost to crazy to be true! 

We were blessed by everyone that came out to support us! 

I dare to believe in incredible things.

April.. it has long been a month of pain and answered prayers. Beauty from the ashes. Redemption. Spring. New life from the dead ground. Green grass. New growth.

I love spring. It feels like spring inside and out...

God has answered some pretty big prayers. I got my April miracle, even tho everyone said it was impossible. (they did everything they could to help make it happen! I am blessed with an amazing team of caseworkers/adoption workers)

My friend says today: "I am never quite sure if the things you do are stupid or just really truly a faith walk." Two hours later she comes back and says.. Well, it appears God has answered your prayers again. ;)

I dare to believe in incredible things, because you are the God of the impossible.   

Two years of praying. Two long years of worry, sleepness nights, tears. Sitting with my kids, praying together, fervently begging God to protect. He has answered. 

                        You hear me when I call.... whom shall I fear? You crush the enemy... 

The God of the angel armies is forever by my side... he is a friend of mine... 

It seemed that we heard this song EVERY single week for almost 16 months as we made a weekly drive to visits. It always encouraged me to keep praying...

Check back soon for the official update on this answered unbloggable prayer!

Ironic... Ten years ago I stood at the side of a wonderful man. I pledge my life to him, through sickness and health, until death do us part. We were blissfully happy. We took our honeymoon to Hawaii. We also planned a trip to Hawaii for our tenth wedding anniversary. 

                      

Through good times and bad times, they shared them together.. 

they cherished each moment... but now he is traveling ahead in the distance. but he made me this promise I hold in my heart. 

He said I will leave you a message on the far side of Jordan, I will draw you an arrow down in the sand. 

I will point to the place I will be waiting and we will go see Jesus hand in hand... 

They sang this song at his funeral. I always cry. every single time. I listen to it.

It is now my tenth wedding anniversary...

Hawaii is not even in my wildest dreams.. reality check: I dreamed of going to this excellent training for connected parenting this weekend. Even that won't happen!!  Instead I will be  babysitting for friends! 

I look around me. I see the 6 beautiful children God has given me. I am blessed by some pretty incredible friends. I am living a life, that I could not even have begun to imagine. I love this story written by God. The broken beautiful.. some days I lose sight of the good things God has done. Some days are hard. Some days the tears fall.

some days... I get tons of hugs. My son writes in his language arts " being loved and cared for means... being adopted into a loving family that cares for you". I get to watch the excitement of a little boy experience so many firsts. I get to watch the big boys grow in confidence, into Godly men. I get to watch my beautiful daughters, heal, grow, nurture, love and just enjoy life.

This is my current favorite song...

I know that I don't bring alot to the table..
Hold me together when I fall apart.
Your love will never change.. you can take broken things and make them beautiful..
You say that you will turn my weeping into dancing.... 

                                       

Easter..

Today I am thankful for a Jesus who died for my sins. I am thankful for Easter.

We had an amazing service last evening at church. Today we will our own little celebration here at home. We were unable to travel to out of town family and are choosing to celebrate here at home.


We have lots of eggs to dye and good food to eat. We hope to visit Grandma E this afternoon.

But most importantly, we want to focus on what Jesus did for us. We don't want the Easter bunny crashing the celebration of our Savior.

Have a Blessed Easter! 

Budget Challenge

I am motivated by life challenges. So we are doing several  "do without" challenges.

 Last summer we started a with not eating out. at all. for a month. It turned into not eating out hardly ever. The same thing with buying coffee. It takes thinking ahead but truly saves so much money. For ex. I will prep a meal before we leave the house or I will make a coffee to go as I am leaving. Both these steps help us to save money.

So I decided to get serious about these challenges, trying to a do a different challenge each month.

The month of Feb. we hung all our laundry out to dry and switched to cloth diapers. I finally caved at the end of the month and allowed a friend to bless us with a wonderful dryer. (I am still using cloth diapers, much to the shock of those around me) ;)
I was so thankful for the dryer that I totally quit hanging out laundry! lol So not sure that one was really helpful long term!


I skipped the challenge in March...

For April, my challenge was to use up all the meat in the freezer and  go a month without using burger.

I have 3 freezers. Currently 1 is empty, a second is only half full and the third is almost full. (mostly fruits and veggies)  It is time to turn our steer into beef. But I wanted to fatten him up a bit more. So we decided to do a, clean out the freezer challenge. It has proven to be quite the challenge to cook gluten free with  the meat from the bottom of the freezer and no burger.

My friend ended up blessing us with a large of amount of meat, chicken, grillers, canned meat etc.. my children were thankful that this challenge did not last more then a week. They love their meat!


When I first started the challenge in Feb. I was sharing with a friend that while we were doing well and God was abundantly blessing us, I felt like this  challenge was important for my finances. So when my explorer needed replaced (some insurance money), my large van needed a good bit of work, my dryer died, my printer crashed, my hard drive died, and my kids burned up 2 tanks of oil in March,  we were ahead of the game because we had saved up.

There are days when I look around me in awe. Several people have told me recently that I am not getting "what I deserve" from several financial resources. That I really should be fighting for more. But I rest in that God directs every aspect of my life. My obedience in tithing and in never fighting over money, has brought back ten fold blessings.

My children and I pray over our finances. I explain how and why we can afford things. I make sure they pray AND acknowledge the answered prayers. You can't teach this in Sunday school. This is the real deal. Real life where God hears and answers.

Have you ever done a "do without challenge"?

Life

We so enjoyed recharging on our staycation.

We are getting deep into schoolbooks, trying to hurry through our books. This year was one of the best homeschooling years ever. I love the curriculum we are using. It is thorough and easy to for the kids to do on their own. It teaches lots of basic fundamental skills etc.. However, it does not flow easily with our "go with the flow" schedule and I am struggling with how to wrap up the year.

Someone washed my camera in the bathroom sink.. I think that possibly with the help of a bowl full of rice, it may work again.

We are so wishing for warm weather. We are itching to get outside. I did rake up sticks and weeds in the yard tonight. I spring cleaned my basement and am thinking of starting upstairs. But I need sunshine for motivation!

We purchased a baby goat named Daisy. She is the cutest little thing and loves to run and play with the kids.

Life is slowing down. We had no appointments this week, altho I did have to take the mini van to get a tire fix. I also had to get a new drivers license. But other then that we have been home, doing school, babysitting, hanging out.

My son wants to go hiking on the Appalachian trail. So he is currently "training".  I am proud of his willingness to work hard.


Sometimes homeschooling is extremely frustrating and I feel like certain children of mine will never ever catch up. I think I shall ship them all off to private school. But then I talk to my friends who have kids in private school and I decide that I would rather have my own problems.

April is coming up.. It is always a bittersweet month. We are currently praying for another April miracle.

I am sooo dreaming of summer already. We will not do fulltime babysitting but will keep enough hours to cover what we need. We will be doing summer school for Nesiah and summer camp for the others.. Now if I can just coordinate all their schedules I may have some free time.


But first before summer, all 6 of my kids have medical or dental appointments. I like to get all the major appointments for everyone, out of the way before summer. July and August should be completely free of scheduled medical appointments.

These are the ramblings of my mind. No major drama this week, no major appointments, no major anything. My life feels downright normal!

"Staycation 2015"

I did not carry my camera everywhere on this vacation. The pictures I did get were few and far between. The extra space in my bag was traded in for breathing meds etc.  I was determined to make the most of this vacation and focus on the kids...

Day #1 we were home in the morning, watching movies, hanging out, and finished up packing (for our then canceled vacation)
We took Nesiah to our friend's, intending for her to stay for the week. 

We had Chinese for dinner and watched a Mandie movie.

Day #2 of vacation we made the decision to NOT go to Williamsburg. Read my previous posts for our reasons..
We ended up at a friend's for lunch and snowmobile rides. 

Day #3 We decided to make the most of this "staycation". We visited The Turkey Hill Experience. The kids absolutely love that place and are already begging to go back! We also stopped to pick up Lady and all of Nesiah's stuff, as she was coming home on the bus. (Nesiah goes to school so she is often on a different schedule from our homeschool schedule)

Day #4,  Day 3 had been rather exhausting for the sick one and for momma, who was running on fumes. So day 4 was an easy day. We went to the library, where everyone got a stack of books and  some movies. We had a fun day watching movies. (Normally I only allow movies on rainy days or when I need a break, never, ever all day movies. So this was a huge treat!)

Each evening one kid would chose what they wanted to make for dinner from the special food we had purchased the week before! We had some fun treats that are normally not on our gluten free, sugar free menu! 

Day #5 We watched movies in the am. After lunch we packed up and headed out to Sight and Sound to see Moses! We have been trying to get over there for almost a year, so this was fun and highly anticipated day! 

Day #6 We headed out to our favorite little creative reuse shop. Lancaster Creative Reuse! We had fun making crafts and using our imaginations! We stopped by Chik Fil A for ice cream treats on the way home! 

Day #7 we had planned to clean our house, do some laundry then go to Herr's Pototae Factory, but I sorta messed that one up. So we were unable to go. Instead I let the kids choose what they wanted to do after our cleaning was done... The boys chose to set up their tent in the yard and "pretend" camp, while the girls painted nails and watched movies.

Day #8 our last day of vacation! We did our normal Saturday morning, pancakes and Adventures in Odyssey. I had made arrangements for my friend to watch the 2 little ones in the evening, so we could go out for dinner and Saturday night church! This is one of our favorite Saturday night traditions.

We had sandwiches and ice cream at Udder Choice, then off to church! It was such a good message following the week I had. The perfect way to end a #makinglemonade staycation.

In the end the kids all agreed that this was a great vacation and that they all had a great time! 

Sovereignty of God

The kids were not happy when our much anticipated vacation to Colonial Williamsburg had to be canceled. Saturday was a long, hard day for me. I was exhausted, worried about the asthmatic one and sad for my big kids. I hate when I can not keep promises to my kids.

Saturday the big kids did really well. I had been up the majority of the night before, they played quietly while I napped. Once I was rested, we went to drop off Nesiah and Lady. I picked up chinese and a movie. We have been saving for this vacation and had not had chinese in several months so this was a huge treat.

Saturday night was awful, not only was I dealing with a sick kid, but the reality that I was going to break my kids hearts. They were going to need to give up yet another  fun event.


Sunday morning I informed them that we could not go that day and possibly not at all. I was texting the lady in charge of the retreat, trying to work out details to postpone our trip.

My kids were angry and rightly so. I gave them space to deal with their emotions. We had a long chat about answered prayers and hard things in life.

See this is the thing, God has answered so many prayers for us. My friends all joke that if they want something, they will simply ask us to pray for it for them. My kids wanted to know exactly why God would not answer this prayer for healing. Did God not know that they wanted to have fun? Did God not want them to have fun?

 We believe that God gives us the desires of our hearts. BUT ONLY IF THEY ALIGN WITH HIS PLAN FOR US. We believe that God is sovereign, which means that sometimes He will not give us what we want, because it is not His best for us.

We talked about dealing with accepting hard things, accepting when we don't get things we want. We hashed out why God would not give them what they/we wanted.

We talked about feeling upset and angry but not focusing on the negative.


(Several weeks ago I was at an adoption training. The trainer shared something that stuck with me. So many biological parents were not taught/given the tools to handle crisis or hard things. They do not have the ability to manage life's curve balls. We have coping skills, learned from life experiences in a healthy family. So many biological parents do not have that and when life comes at them with hard things they self medicate or self destruct)

So I decided this was a teaching moment. A time to teach and model how to handle big disappointments in life.

We also believe that when God says "no" then we need to make the best out of what we have. "Life is hard, deal with it" is one of my mantras.

So as we were discussing and venting, my friend texted me. They invited us over for lunch and snowmobile rides. The attitude in our house changed pretty quickly with that invitation. We were thankful for friends and the kids angry attitudes softened.


Sunday night was not great. I decided that it was now time to salvage this vacation.

My friend is also one who always helps me sort out life and see the light when I am drowning. She and I had a good discussion on how to salvage our vacation, how to make it fun and how to regroup.

At this point the kids were open to alternatives because really Saturday and Sunday had been fun, despite the disappointments.

So we decided to do a staycation. The only problem was, we still had the health issues to contend with. So we are taking each day as it comes. So far it has been quite fun. We made a list of things we would like to see and do, using the money put aside for the Williamsburg vacation.

The Hard Things in Life..

We have had a hard year. The kids have done great with the roller coaster ride of foster care. They have learned much compassion and made many sacrifices.  They love deeply and care to much.

I decided to take them on a vacation as a reward. Family vacations are a wonderful bonding time for us. We love to travel and hang out together away from the stress of every day life.

We did some research on vacations.We wanted to celebrate some pretty big deal answers to prayers, while making fun memories.

We used to go camping, but no longer can due to unbloggable illnesses.

We have to have handicapped accessible, large family accessible, single parent friendly and allergen free vacation spots. Yes, I always ask "does the room/house have new paint, new carpeting, is it smoke free and is it pet free? Does it have room for 7 people? Is it handicapped accessible? Is there room to park a 15 passenger van with a side lift? Is it a safe area for a single mom and young kids"

We found the perfect spot. A large family, homeschool retreat in Williamsburg Va. It met all my criteria. Bonus, it was educational!!

I spend hours, making arrangements for Nesiah to stay at respite, for someone to care for our animals, for someone to dog sit, for transportation for Nesiah from respite to school, and for all foster care permissions to travel. Not to mention preparing food for the week, packing all the kids and all the meds, everything but the kitchen sink!

We made costumes for the boys. The kids counted down the days.. We were soo excited. I went to great lengths to make sure that the week prior to going was to be stressfree, so I could be calm and relaxed in prepping that final packing/prep work.

First someone reacted to cat hair brought in on our little kiddoe that we babysit. We had a rough two days. Then that same someone contracted pink eye. We visited the pediatrician on Wed.

We also had 3 caseworker visits, our monthly visits, and 3 days of snow and ice.

My birthday happened too along with the biggest snow storm of the year.

Friday I called the specialist and the pediatrician the illnesses were worse.. they continued to worsen over the weekend. There was little sleeping, lots of nebulizer treatments and lots of worrying. There was even a late night, on really icy roads, trip to the ER.

so Saturday morning we made the decision to postpone our vacation. The much anticipated vacation. The kids were heartbroken, but were fervently praying that we could still leave the next day. We packed everything into the van, dropped Nesiah off with a friend and made sure everything was ready to leave first thing the next morning.

Saturday night was awful. Really awful.
Sunday morning, we decided that it still wasn't wise to travel. The kids were angry. We unpacked the van.

Monday morning I announced a change of plans... We were going to do a "staycation" instead of going to Williamsburg.



More to come...

Yearly Specialist Appointments

Tomorrow is our big day of medical appointments for Nesiah. She has numerous diagnoses due to her brain injury.She has an extensive team of specialist that follow her case. She currently is doing well and on maintenance with the majority of the Dr's.

She has a local GI and Neurologist that she sees every 6 months. GI is in charge of her Gtube and her weight.Her appointments are very routine, we go in we see the Dr. He askes if I have any concerns, I say no. He does a physical exam and we leave!

 Neurology is in charge of her seizure meds and seizure activity. In the past 2 years there has been less and less seizure activity showing her EEG. Her Neurologist is very detailed. I love him. He has helped me get various medical referrals that she needs. He is very much on top of things.


However, we have an hour's drive to see Nesiah's Orthopedic Dr and her Ophthalmologist. We only see them once a year and we try to do both on one day. It is generally a very long day. Ophthmalogy does this testing that requires her to have painful eye drops then wait 45 minutes before doing the eye exam. She has cortical vision impairment so generally there is not much involved in this appointment. It is one of those appointments you keep just to make sure that nothing new is happening.


The big deal appointment this year is the Orthopedist. I love this team and their efficiency. We generally go in, do an xray then go over the results with the Dr. (love him), get his recommendation then leave.

 Because Nesiah does not walk, her hips and the surrounding muscles do not work the way God designed them to work. For the past 2 years her hip has slowly been pulled out of it's socket. She will need a major and very painful surgery to correct this. I pray hard every year that we could go one more year without surgery. I can not imagine dealing with a 60 lb non mobile, non verbal child in a body cast for 6 weeks.
So far she has not shown any indication of pain in her hip. We would not know about the hip dislocation if we did not do the xrays. I keep in communication with the school nurse and therapists who don't believe she is in pain. So I am hoping that means we can wait another year for surgery!

We actually enjoy going to this children's hospital. In the past I have taken all the kids along, no one complained. The staff referred to them as Nesiah's entourage!