Transition - Again

All I had to do was get through the summer and Emily would be in high school. No worries, no transition terrors. I was comfortable with the classroom, and with the teacher. Then it happened. At 3 in the morning I was hit by the enormity of the transition. And what if Emily doesn’t have a nurse in September?

I was wide awake by then. Visions of seizures on the bus, strangers cathing my daughter, assistants trying to transfer her for emergency brief changes and getting her legs tangled in the process (her legs flop because she has NO hips), or worse.

So this week I’ll work on school issues, answers to the “What if” of transition. Uggg! Seems only a short time ago I was working through the transition from elementary school to middle school. I even wrote an article about it that appeared in a copy of Exceptional Parent magazine last year. But where do I start this year? Transition to high school seems REALLY big.

Our nurse might/might not be with us in September so I need to think about what the care at school with be like without her taking charge of Emily. To ease my mind I’ve sketched out a few things that I need to think about.

1. Think about and note what Emily’s needs during school hours will be.

2. Come up with a list of classes she might enjoy.

3. I should also determine what may not be important to her at school.

4. One thing I learned from Emily’s transition to middle school was I needed to learn about the process for new students (supplies, student body card, peer support, etc).

5. Finally, and most importantly, I should decide on a plan of action for emergencies.

While this list isn’t complete, it will help to ease some of my tension over the transition process.

52 Week Blessing Challenge – Week 11 Going to Church

As the 4th of July holiday edges closer I am reminded of how blessed I am that I can go to church. There are many people around the world who do not have the advantages that we have here in our country. We are so blessed to be able to worship God in freedom and openness. And we have so many churches to choose from.

In our country I do not have to worry about someone turning me in to the government for saying I believe in Jesus. I don’t have to worry about praying in public. And in our country we can worship God without fear of reprisal, which is not true in some other countries.

In recent years the numbers have fallen of those who attend church regularly. I have to say that I am one of those numbers. But I know that caring for our daughter is a ministry, and where else would a minister be on Sunday but ministering to those who need you?

There are things I miss out on when I’m not in church. Communion and community prayer are both important to me. I miss the fellowship also. I receive a Sunday bulletin through currier (thanks Les & Naomi!) and am able to keep up on some things. But sometimes it feels like I’m just not part of my church family because I’m not there enough.

So my plans for this year are to try and make arrangements for Emily’s care so I can be at church more, and take advantage of our freedom to worship. After all, that is why our forefathers came to this country, to give us the freedom to worship God. What a blessing!

Just a Normal Person

So now before you all want to canonize me and decide I’m some sort of saint you need to know that I’m just like the rest of you. 

My dishes need washing…..

My laundry needs to be folded and more laundry needs to be washed….

I sleep with my mouth open, and I don’t look so great in the morning….

And I depend on the Lord for support.

And if I seem different, or better, or more together, I’m not.  However, I know where to get my strength from.  I could not have survived foster parenting medically fragile children (and many people don’t) if I didn’t know and trust in the Lord.  His word is refreshing and recharging. 

Each weekday morning I wake at 5am (at least most mornings) and I have coffee with the Lord.  I do nothing different than most of you, just read and pray, and then start my day.  I do know that when I don’t start my day in that order I feel like I’m not recharged.  My batteries are drained and I have trouble with things that come my way during the day. 

So before you make me into something I’m not, remember, I’m just like you….  I drip coffee on my shirt and I’m a regular person who has a regular life just like most everyone else.  And I hope you’ll remember to pray for us because we need your support too.

Thanks for listening~

Michelle

After the Cuddle Bug

And how did I go on? God’s grace pushed me to continue to care for the special children. I had a foster baby who filled my arms with joy. He was only in our home for just a month or so, but it was long enough to keep me from saying “never again”. When he moved out I took his crib down, though I left the Cuddle Bug’s crib in the same spot in our foster room. I had to leave it there or I would never use it again. And we received another fragile child.

For those of you who don’t know the story, we started into foster care because we have a son who was medically fragile due to a genetic disease, which at age 25 he still lives with. His health was challenging as an infant and there were NO other children in our state who had this disease. I used to cry because there was no one I could talk to and no one to help me. I had no idea there were so many different diseases and disabilities until Jered was born.

Once I learned to care for Jered, and he thrived, I wanted to help other families who had children with special needs. I had no idea how to do this. I was only one woman, and I worked outside the home full-time. What could I do?

I remember telling my husband that I wanted to help families like ours. I didn’t want to provide daycare and I didn’t know how I was going to help. And then I saw a newspaper story.

The news story told about infants and young children with disabilities who needed special care. Their parents often needed a break and the state was looking for those who had some extra time and patience to provide “Respite Care” for these little ones.

RESPITE CARE

I had never heard of that before. Even though Jered had his own special needs not one person told me what respite care was. Now that I was reading about it in the news story I realized that was what I wanted to do. I figured if I was caring for Jered, and I was doing okay at that, maybe I could provide respite for a family who needed it.

To provide respite care in our state you need to be a licensed foster home. We went to an informational meeting, and Jeff and I agreed we did NOT want to provide foster care! That was not for us. Our home was licensed (for foster care) and we became respite care providers.

In our classes we didn’t talk about children having life-threatening events, we mostly talked about the social and legal issues of foster children. We had no idea that death could or would be upon our doorstep.

So after the Cuddle Bug, when I left the crib up in the room, I asked the Lord to help me care for the child who would next sleep there. He is so faithful! Memories of the Cuddle Bug were so fresh. When I heard a siren outside I would burst into tears. I remember while driving one day I heard a siren and I had to pull over because I was crying so hard I couldn’t drive.

But affected or not we allowed a new foster baby into our home. She arrived with a quiet little cry and the first night she was in the crib I slept on the floor next to her. I was terrified that I might not hear her if she needed me.

And God comforted me. The next night I slept in my bed. It was difficult to sleep, but again God comforted me. And we cared for that new little one till it was time for her to move on.

It took a whole year to grow used to the fact our little ones were only on loan from God. And God continued to comfort me, as well as my family.

Although we don’t provide foster or respite care anymore we are still caring for our children with special needs. Jered doesn’t need my care (well not much) anymore, but Emily and Grace do. And though I feel like I live on the edge with Emily’s health at times, I know God is there, to comfort and ease the stress. He sends people into our lives to help and support us. And if we haven’t said so, we are SO grateful!

Thanks for listening~

Michelle

The Cuddle Bug (Warning! Get the tissues.)

Today, instead of a picture, I’m going to post a Memory.

Sometime, but not too long before our oldest daughter was born I cared for a little guy who had severe brain damage. His mom called him Cuddle Bug. His issues were not so much how he got them, but how he lived. And it was a difficult life for this little guy. Seizures wracked his body many times a day, and he cried. Most of the time, when he wasn’t having a seizure, he was sleeping. His care was…. well, for me, easy. I say easy because aside from the medications and breathing treatments, his care just involved loving him. And we loved him up. From morning till night, even in the middle of the night I would be up walking and talking with him, praying for him, and just loving him.

This little guy lived with his birth family, and they took good care of him. But several times during the week I would have him at my house, providing respite care for his family. For those of you who would love to care for a baby with special needs this is a great job. We took care of him and then he went home for a few days, and then he would come back and I would care for him and love him up some more.

I didn’t realize back then what a wonderful situation this was for the family. I was just the respite mom, that was my job. Now that we have a child with severe disabilities, and we are in the parent’s shoes, I totally understand the need.

The Cuddle Bug was with us for 10 months and in that time he grew, and we grew to love him. Even after all these years I can recall his soft brown hair and his immensely chubby cheeks. And to hold him was like holding the softest sack of potatoes you could imagine. He had no muscle tone and care had to be taken when lifting and moving him. His head would drop if not cradled, and his feet would catch on blankets if not detangled in the process.

In all the days I cared for him I prayed for him. There was always children’s music playing, singing about Jesus. And when I would rock him in my arms I would tell him that one day he would see Jesus and Jesus would make him whole. One day he would be able to run and jump and play. And Jesus would love him more than I did, and more than his mommy did, and he would love Jesus.

One evening after sharing a wonderful meal with his family I asked his mom if he would like to come for a visit, to spend the night. She had been up with him for several nights in a row and I wanted to give her a break. So she packed his clothes, and toys, and pillows, and we put him in the car.

When we got home I fixed his medicine and fixed his bed and lovingly dressed him in his “big-boy” pajamas. I told him how I was fixing him up just like his mommy does it. And then I told him how much his mommy loves him, and how much we loved him, and how much Jesus loved him. And I kissed him goodnight. From my room I could hear him breathing rhythmically, his bed was on the wall behind my open closet.

Morning starts early at my house. Depending on the child, medicines are given as early as 5am, so I’m usually up that early. Instead of turning the light on I used the night light to see by as I administered the morning meds through the feeding tube to the Little Cuddle Bug. He was sleeping so peacefully… As a matter of fact I had never seen him sleep so peacefully. There’s that word again, “Peaceful”. It was remarkable how good, peaceful, he looked.

Then I noticed, with my hand on his tummy, holding his feeding tube that I had just put medicine into, I noticed that his chest wasn’t moving. HIS CHEST WASN’T MOVING!

Quickly I unclipped his feeding tube from the pump and grabbed him and ran to my room which was right next to where he slept. I knew I needed to start CPR but my brain went blank. He lay on my bed, lifeless, as I called 911. The operator instructed me to put him on the floor and then told me how to start the CPR. It flooded back in an instant, all the classes I had ever taken. Years and years of CPR, renewing my card every year just for this day.

Between breathing into the Cuddle Bug and the chest compressions I was able to call out for my younger son to get the dogs put into a room and open the front door for the medics.

It seemed like it only took a moment for them to arrive, and there they were, in my house. The medics used all their might to try to bring him back, and yet he would not breathe. And I cried.

He was gone. I called his mom and had to tell her that I thought he was gone. I didn’t know that he would die. I knew he had severe brain damage, but I didn’t know he would die. His mom arrived and she sat and held him. She held him till after the coroner arrived. She held him while the priest prayed over him. And she held him longer. And then the coroner took him away.

Everyone left. My arms ached. They ached because of the CPR, and they ached to hold him again. And I grieved. I grieved for the family and I grieved for our family, and I grieved for myself. How could I let this happen? I knew there wasn’t anything I could do. I knew it was God’s perfect timing.

We cared for other children after the Cuddle Bug. And in that time two more of our foster children have gone to heaven before us, though one lived to be 6-years-old, and one we only had for a week. And because God gave us the strength and desire to care for children with special needs He gave us the grace to go on.

So as I remember the Cuddle Bug today I remember that God was the one who gave me the strength to get through that day, and through the weeks that followed, and the years after that. His strength is perfect in our weakness, and I lean on Him. I know that The Cuddle Bug is with Jesus, running and jumping and living in more love that we ever thought of giving him. Its a sweet memory now.

Those of you who are going through devastating times I want to encourage you that God hears. He knows your situation. Through his love you can gain comfort and hope. If you need someone to pray for you, please write, I’ll be happy to pray for you, with you, through your situation.

Michelle

52 Week Blessing Challenge – Living in Washington

I feel so blessed to live in Washington. Green trees, beautiful foliage all around. I live in the shadow of Mt Rainier.

It tends to rain….. a lot.

Nature abounds in our yard.

Sometimes spring is early.

And sometimes winter stays a while longer than it should.

And even with wild weather

I’m feel very blessed to live rural,

where we can have animals,

and fun,

and friends.

Father’s Day Surprise

We started with this….

Emily put her fingers into the bowl and Grace finished up.

Next we took the cookie cutter and did this….

The scraps made a couple more.

Then we were on to the next step.

Grace was excited about helping, Emily had a seizure.

Once the cupcakes were done we began to put the surprise together.

Does it look familiar yet?

And then we added this…..

To make this!

The finished product.

I found the directions for this treat on Bakerella’s blog.

And Our Spirits Were Lifted

Yesterday we had to get ready for something really exciting. That meant moving Emily’s “Kids” from the net in the corner next to her bed to another safe place. She was very upset and cried and cried when we took the net and her kids down.

And then the most wonderful people showed up and went to work.

That corner is where the toys used to hang in the net.

Almost done! It looks like it is in the middle of the door, but it isn’t. This is called a Voyager Lift System.

Lets give her a try.

Nurse helps Emily into her chair.

Guess who else wants to try it.

Grace thinks it works perfectly also.

I am so thankful that God has blessed us with this lift!

Last Day of School

Today is the last day of school. I don’t know whether to be happy or sad….. Emily was able to go for a little while yesterday. She came home with this:

How thoughtful!

52 Week Blessing Challenge – Week 9 Being Home From the Hospital

I feel so blessed to be home from the hospital! Emily is doing better each day. On Saturday she only needed medication twice for pain. She slept Saturday night and was nearly pain-free yesterday! This morning she was awake at her regular time (4am) and began the day by laughing and talking. Even from my room I knew she was playing with the balloons a friend gave her while in the hospital. They are tied at the head of her bed and she can get her arm up there and with a clawed hand she can grasp the strings and pull the balloons toward her.

I’m so blessed to finally have time to plant my garden. The garden is a couple of months overdue, but that’s okay. The sun has been out for something like 23 days straight. I’m praying that the nice weather continues.

The seedlings were planted and the plastic top put over them. This tray holds lettuce, spinach, green onions, green beans, carrots, and watermelon (might be too late for this).

The new garden holds 3 kinds of tomato, a jalapeno plant, cilantro, peas (they will be tied to the fence by next week), and cucumbers.

First fruits from the strawberry patch!

Attention All Knitters

Just wait till you see this.....

Bugknits

This website focuses on one woman's knitting in miniature projects.

A New Plan

I’m so thankful to the Lord that we are home from the hospital. We’ve been to the pediatrician and now have a new plan.

Monday – Make appointment (again) for the Lithotripsy (kidney stone removal).

Tuesday - Emily will have her back x-rayed to see if the bars are in place and if any of the rings that hold it in place are broken. Make appointment to talk to the orthopedic doctor.

In a week – ultrasound of abdomen, look at pelvic area and kidneys including stone.

July - Appointment with general surgeon to talk about possible adhesions in her abdomen.

Last night wasn’t too bad, Emily slept for several hours, but we are trying to control pain as I type. Thursday night neither of us got any sleep. Being overly tired and in pain isn’t really a good mix, for either of us.

Today nurse comes over and I will do a little more house cleaning while she cares for Emily. Boy howdy. One little girl can sure make a mess in this place when Mom and the other girl is away. I’m also looking forward to Jeff and I taking time for ourselves outside the house, something we haven’t done in a while.

Please continue to pray for:

1. Pain relief for Emily

2. An answer to pain, whether it be Kidney stones, back problems, adhesions, or what ever. We just need to find the problem and get it corrected.

3. Rest. We all need more rest.

And Just Like That

We're Home!

The pain has not been resolved, however Emily is tolerating her formula and she was feeling excellent today. The doctor said we could leave and gave us a few instructions for follow-up with a couple of Emily's other doctors.

Emily laughed and laughed all the way home, and then laughed and laughed once there. She was laughing till she went to sleep tonight. I'd laugh too but I'm too tired.

Thanks once again for all your love and support!

The End of Week 1

Ok, here we are, still in the hospital (the one with the prison yard view). Since we’ve been here the doctor has re-started Emily’s feeds, which didn’t go well. She changed her back to a formula that Emily was on a few months ago. Seems to be working better, no bloating or extra gas. Pain continued.

Yesterday the g-j tube was pulled and the normal g-tube was put back in place. Tube site that was gross and crusty looks tons better this morning. Feeding still going okay. Pain still visible.

This is what pain looks like when there are no tears.

Last night Emily had a seizure lasting 25 minutes, normal for her. She was given a dose of Valium for the seizure. This was such a blessing in disguise as it helped her to sleep, even through another IV insertion. She slept until 3am. So I was able to sleep some also. I did get up at midnight, but 2 hours plus 3 hours equals more sleep than I’ve had in the previous 3 days.

This morning the pain has started again. There is only an Rx for Tylenol, which is just taking the very edge off the pain. I asked for a heat pack which I put on Emily’s tummy. This helped somewhat but then she wanted it removed.

Although I’ve asked the doctor for several days to figure out the pain, today is the day. Something HAS to be done. I don’t know if it will be a lower GI, or more x-rays, or what, but they NEED to figure out what is causing the pain.

I talked with Grace on the phone yesterday because she can’t come visit every day. She misses me terribly but is so proud of the bike riding skills she has acquired in the last couple of weeks. She even said, “Mom, I can talk to you on this cell phone while I ride my bike!” Of course I replied with the usual, “You’re doing what???”

I want to thank each and every one of you for your kind notes and your support in prayer! A number of friends have called, and stopped by to visit bringing food and snacks, flowers and balloons. The Lord has used you to lift my spirits and put energy back into my life. There is a new song in my heart today as I write this. Thank you from the bottom of my heart.

Sounds Like a Good Book

In Faithfulness He Afflicted Me - by Lynette Kraft

52 Week Blessing Challenge – Week 8 Crafts

Crafts are such a part of my life and I feel so blessed to be able to understand how to do a variety of them. While in the hospital with Emily I have plenty of time to work on my needle tatting.

I finished this cross a couple of days ago. I’m currently working on a cross with thinner thread. It’s a little more challenging because it is smaller, but the stitches are all the same so it shouldn’t take any longer to complete.

Other crafts I enjoy are

Weaving

Felting

And other needle arts such as this crochet edging I made on the bottom of a hand woven shawl I wove for my aunt.

I’m truly blessed to be able to make things from just a small piece of fabric or string.

Weekend Update

Today I'm discouraged. Emily had a difficult time starting formula again, even though it is going through the J tube. Last night was exceptionally difficult. As soon as the pump starts she coughs and gets tight fisted and generally irritable. Last night her pump ran at a speed of 80cc hour till 4am when I asked for it to be shut off because she kept crying.

I asked for the feeding pump to be set to a slower speed tonight to see if that might help. At first she writhed around so much that her fists opened up the connection of her urine catheter twice! UGGG.....and of course the nurses are busy until about 10 minutes after I call for them. By that time I've changed her gown and her briefs, rolled her over and put new quilted pads under her, and just gotten her straightened back in her bed when a nurse arrives. And then I'm chided for doing it all myself. But I just can't see letting her sit in the urine (and last time the drainage from the g-tube that happened to spill out).

On a happy note, Emily sat in her chair and we looked at blogs together. At one blog she thought she knew the children from the pictures and was SO excited to see them! We laughed about that.



I sat around today thinking (because I have a lot of time to do that) and I made a mental note that I need to purchase some pajamma pants for the next time I'm in the hospital with Emily. They sure would come in handy in the evenings when I have to get out of bed to do something for her. I don't feel I can dress for bed because I don't know when I'll get up and who will be in the room with me.

Emily is in a Stryker bed. Oh it is so wonderful! I'll post more about it in another post.

Prayer requests from here:
1. Emily needs to tolerate her tube feeding.
2. Emily needs to hold and gain weight. She has lost about 12 lbs during this time.
3. Emily is on a new med (old med) that can cause a movement disorder. She already has a movement disorder so pray that it doesn't affect her in that way.
4. Remember Jeff, Grace, and Jered in prayer. I'm missed at home.
5. Pray for the doctor to have wisdom in handling Emily's feeding intolerance.
6. And pray for me to hold up.

Thanks

View From Our Room

At least I can see if it is day or night.

Emily loves to visit with Dad.

Laughter is the best medicine!

Grace enjoys coloring in Emily’s room.

Grace is enjoying a book over in my bed.