Since then, again. My husband has been out of work since January. We are so thankful for the job that he had even if it only lasted 10 months. So. Here we are again, unemployed and job hunting. But this time I am doing alright. Someone asked me what was different this time. I still have hard days and struggle with fear of the unknown but overall it is different. So what is it different this time? I think I am learning to trust my Heavenly Father, I still have panic days and ups and downs but I am not crying alone in the parking lot at night like last time. It is not a crisis like last time. I have hope that things will work out. I don't fight it, well at least not as often as I did last time. I love the quote from C.S. Lewis, "“I pray because I can't help myself. I pray because I'm helpless. I pray because the need flows out of me all the time- waking and sleeping. It doesn't change God- it changes me.” I think that was what I was trying to do before, I was trying to change God, to convince Him that my idea of how things should go was better than His.

I cringe when people tell stories about how they bargain with God. Pleading with God that if you do this then I will do this; I will give up such and such so that I can have this blessing. God does bless us when we obey His commandments but He sets up the terms not us. When I say this I get reminded of the story of Hannah and Samuel. The short version of the story is that Hannah wanted a child so much that she vowed that if He would bless her with a son she would give her child to his service in the temple. I don't claim to have perfect understanding of the scriptures but to me this story isn't about changing the Lord's mind, it is about changing Hannah's heart. So Hannah could come to a place that she would be willing to do whatever the Lord required of her; namely to joyfully give her son to the Lord. God knew that Samuel would become a great prophet. As a mother I am not sure I could give my young child away and only to see that child once a year.

I also have a hard time when people talk about they know God is good because they were given what they asked for in their prayers. Yes God is good. He answers prayers and the power of prayer is REAL. But what about the times when we don't get what we want, when the answer is "no," or "not right now" or "not in this life." Does that mean that God is not listening to our prayers, that we weren't righteousness enough, that we didn't have enough faith? Why do some seem to suffer year after year while others have their prayers answered they way they wanted? I don't know the answer. I do know that God knows ALL and that the things we experience in this life are custom-designed to bring us closer to God, to become more like Him. I know that each of us is different and we each need different trials or challenges to help us learn and change. 

When life gets hard or scary or painful. I try to remember the story of Peter walking on the water toward Christ. Matthew 14:30."But when he saw the wind boisterous, he was afraid; and beginning to sink, he cried, saying, Lord, save me. As Peter walked on the water, wait let stop for a second. He was walking on water! We talk a lot about the sinking Peter but let's not forget the walking on water Peter. We will all have times in our lives when we are living in our own perfect storm and expected to walk on the water. At some point between the boat and Christ Peter lost his focus, he looked around at the storm and feared, then he began to sink. I have felt that sinking into the stormy sea despair. 

That last part of verse 30 and verse 31 shows us how to come back from that despair. Peter cried, "Lord, save me. And immediately Jesus stretched forth his hand, and caught him, and said unto him, O thou of little faith, wherefore didst thou doubt?" 

I have always overlooked verse 31 until now, "And when they were come into the ship, the wind ceased." Jesus immediately stretched forth his hand and caught Peter but the storm did not immediately stop. Peter walked back to the boat with Jesus on that stormy sea. The Lord is always waiting to help and strengthen us, but He doesn't always take away the storm. Sometime the storm lasts for years sometimes for a lifetime. Sometimes people say, "She is so strong, or I could never go through what so in so is going through." As I mentioned before we each have our individual trials but with Jesus as our rock we can do all things. I haven't experienced all things but with what I have experienced I have learned that it is much easier to spend less time doubting and worrying and more time praying and studying the scriptures.

My understanding of faith is that it requires action and not just a belief or words. If Jesus stretched forth his hand to catch Peter then Peter must have been stretching forth his hand or hands toward Jesus. That is an action an action of faith. What will we be required to show as our action of faith? My guess is that it will be whatever we need to give up to become more like God. 

I love that talk by President Dieter F. Uchdorf in this last general conference. https://www.lds.org/general-conference/2014/04/grateful-in-any-circumstances?lang=eng He said, "Could I suggest that we see gratitude as a disposition, a way of life that stands independent of our current situation? In other words, I’m suggesting that instead of being thankful for things, we focus on being thankful in our circumstances—whatever they may be." So I am looking for things to be thankful for each day. Does that mean that I pretend that everything is fine or that I am happy with our circumstances? No. But it does mean that I trust that things will get better in God's own time and way. It means that I exercise faith and show that I love Him by keeping His commandments. And when I fall short, I get up and try again. Philippians 4: 13 I can do all things through Christ which strengtheneth me.

Since then.

My husband has been working full time for about 4 months now. It is still hard to in the mornings, the relentless burning pain makes him stiff and achy. He has good days and bad days but he get up, he goes to work and comes home at the end of the day. I can not express how thankful I am for this answer to our prayers.

We went to our annual family reunion this summer. At one point I was standing out on the cabin deck to admire the stars. I realized that is was only a year ago that I stood on this same deck and cried. I cried because of all I thought I had lost. I mourned the sense of comfort and settled-ness that I no longer felt. I am in a very different place now. Emotionally and spiritually. I don't know what the future holds but I do know that God is aware of me, that He loves me and that He will not leave me comfortless if I will trust Him.

I know the secret to life,do you want to know what it is? We have a purpose on this life, a mission is you will. Our job is to find out what that mission is and do it. Now the problem with this is that sometimes we think that this mission should be what we want it to be. That this mission is something that we choose or design. I truly believe that the secret to life it to seek and follow the mission God has for you. It is when we get "our mission" and "God's mission for us" mixed up that we feel that life is not right, not fair, not how it should be. This is true for our children as well. I get too wound up in what I think they should be doing and forget to ask for God to help me help them to find their mission. This is what caused my greatest despair when Ginny was born.

I read on a friend's blog about her experience talking with a friend who just found out their little one has Down syndrome. It brought back memories of those first days and weeks after Ginny was born. I still remember in the hospital when I was still in a state of shock when we found out our little girl had Down syndrome. Someone came and talked to me about her daughter with Ds. We talked and cried together but one thing she said stuck out to me." One day you will look at her and not think about Down syndrome, you will just see your little girl." I didn't believe her at the time, but she was right and that day has come. She is not Down syndrome, she is my daughter. But first and foremost she is a daughter of God and He has a mission for her. Her mission may not look the same as everyone else but it is just as important and wonderful.

For Family Home Evening the other night we all wrote individual lists of things that help us feel the Spirit in our home. After we finished writing we shared our lists. We had some common things on our lists but the one thing that we all had in common was Ginny. She really does bring the Spirit into our home. The Spirit of God, of joy, love and of peace.

The best part about embracing God's mission for us is that it is so much better than anything that we can imagine for ourselves. 

What was going on?

For some reason I used to think that if I was good, life would be good. That if I said my prayers and tried to be a good girl that I would get the things that I wanted in life. I knew that there would still be hard times but that my faith would sustain me during those times. 

These last couple of years have been . . . crushing. My husband has been suffering from debilitating chronic nerve pain. The back sugery didn't offer much relief. I was happy with our four girls and honestly, I cried when I realized I was pregnant again. I have never been a bubbly happy pregnant lady and knew that the gestational diabetes would probably come back again. I dreaded the long nine months and selfishly did not want to give up my body again. Ginny's birth story is covered in another post so I will not go into all those details here.

My husband lost his job a couple months before the baby was due. We were scared and not sure what to do. The pain had gotten so bad that my husband struggled to make it through a full work day. Still we were thankful that the insurance would cover us for a few more months. When Ginny was born and diagnosed with Down syndrome I was not prepared for the flood of emotions. Numbness, shock, denial, anger, shame and fear.

It was just too much all at once. I felt as if someone had come up behind me, pushed me into the deep end of the pool and was holding me under. Thrashing, gasping for air, darkness surrounded me.

My intial reaction was, "What is going on? What did I do wrong? Am I being punished? What do I need to change to make this all stop?" It all seemed so unfair. I didn't feel we deserved all this, especially not all at once. I tried to pray and trust that everything would be okay. Seeing my husband struggle each day to even get out of bed was more than I could stand. I had several times when I wanted to leave, to run away.

I spent many evenings in the car crying in the church parking lot. I started to have feelings of anger toward God. "How could be do this to me, to my husband, to my family?" I kept going to church but most of the time I was numb, just going through the motions.

Still, we were able to see God's hand in our lives. Through disability insurance we recieved an income and it was enough to live on, financially we were okay for a while. My family and friends rallied around us and supported us during this time. We would often recieve anonymous gifts on the doorstep or in the mail. Some people brought us meals, some helped with rides for the girls and many prayers were offered in our behalf. Ginny was such a sweet baby and I loved to hold her close. Yet, the fear of her uncertain future haunted me.

In time I came to see that the timing of Ginny's birth was a tender mercy from God. That He sent her to our family to bring us joy, peace and hope. There is a kind of comfort that only comes from holding a baby. God knew I would need that comfort.

My husband continued to search for relief from the nerve pain. He tried so many different doctors and medications. Some seemed to help but the drugs dulled his mind and made his sleepy. He fought to have power over the pain. There were days I felt I was going to lose him. Sometimes it all felt like a never ending nightmare. No one could offer him a diagnosis or even hope for the future. One doctor even told him that he would probably end up alone, unemployed and dependant on pain killers for the rest of his life. Nice. Despite this it seemed that things were getting a little better. Then his appendix ruptured.  He had to have emergency surgery to remove his appendix and part of his damaged colon. His recovery was long and painful but it was a miracle that he did not die. It almost seemed comical that we couldn't get a break. Once friend even joked that she half-expected to see a plague of locust engulfing our home when she came over.

But life continued as it always does. You wake up, you breath in, you breath out. We had some good days, not so good days and bad days. I had a hard time controlling my temper with the girls and felt that I was always at the end of my rope.

I didn't sign up for things or to offer help to others. I felt I needed all my energy to support my own family. I didn't realize it at the time but in doing this I was further isolating myself and even started to feel jealous of other people's trails. "At least they know what to expect." I thought. I came to my ultimate lowest when I felt that it just didn't matter what I did anymore. What was the point of trying anymore? I became angry at God, again. I didn't want to go to church anymore and became despondant. At the point the Holy Spirit was no longer able to stay with me. I was left to myself. It was a horrible dark time and I felt so alone. I began to realize that I had been recieving help, that God had been sustaining me each day. I repented of my sin of pride and my lack of faith. I began to feel that I could and would completly submit my will to the will of the Father. It was then that I began to feel forgiveness. He washed away my sins. He loved me, even though I was so unworthy, he forgave me. I could feel the Holy Spirit in my life again. I feel joy when I read the scriptures again.

We experienced another miracle when my husband was offered full-time employement. How will he work while still being in pain? I don't know but God has not and will not forsake us. He will give us peace, he will not leave us comfortless. I have seen the hand of God in my life and know that He is mindful of us and our struggles. He has a plan for us, He knows the end from the beginning and He loves us!

Welcome!

I started this blog with the hopes that it would be a way for me to share my feelings and connect with others. But so far it has really been a private journal that I have only shared with a few people. I have come to a more secure place emotionally and I feel I should make more of an effort to connect with others. On this blog I will share my feelings being a mother of a child with Down syndrome.

I will also share my beliefs in God and my Savior. I am an active member of the Church of Jesus Christ of Latter Day Saints, in other words, I am a Mormon. I would be happy to discuss any questions you have about the church but I hope you will show repect my beliefs as I plan to show respect for yours. I am always interested in learning about what others believe and hope you will feel comfortable to share your beliefs as well.

Some of my interests include singing, photography, gardening, classic movies and collecting recipes. I grew up in Idaho and feel I am a pretty down to earth, no-nonsense girl. I love to laugh and try to find humor in daily life. I love being a mother to 5 emotionally charged girls. Life is never dull in our house, that is for sure.

I hope you will come often and share your feelings about life, God, Down syndrome or anything else you feel others would like to hear about.

New Year.

Ginny at 3 months.

I look back on this year and can not believe all that has happened. My husband is still unemployed and suffers from chronic nerve pain. We have hope that it will get better soon but each day is a struggle for him.

She is almost 6 months old. She is such a joy and we can't imagine our family without her. I struggled when she was born. I worried about her future about my future. Over these past few months I have come to realize what a tender mercy it was for her to be born into our family. At first the timing was overwhelming, we were struggling with so many other things at the time I questioned God's wisdom. I thought it was just too hard with everything happening at once. At times is was overwhelming and it still can be one some days. But I now see the timing as a blessing. What else can fill a mother's heart more than a tiny baby? Rather than seeing her as a burden I see her as a gift.I try to to be easily offended by comments that were not intended to offend. After all, I probably would have said something similiar in ignorance too.

This is a whole new world, but I feel that is the real world. Ginny helps me remember why we are all really here on earth. It is so easy to get caught up in just doing stuff, getting nice stuff, trying to keep the stuff safe and nice looking. Then there are the endless tasks. Washing clothes, driving to lessons, cleaning the house, helping with homework, etc. While most of these things are important and even necessary it is easy to lose sight of the reason we do these things. What should be the reason? I believe the reason should be because we are here to learn, to progress, to serve those around us and to become more like are Savior. I get too caught up in "me" and what I want others to think of me and my family. Ginny helps bring me back to reality when I forget why I am here, why we are all here on earth. I thought I was happy, but the Lord had so much more in mind for me. I fought it at first but now I see His ultimate wisdom and love. Things have a way of working out. Things may not turn out the way you thought they would or should; in fact it may turn out be better than you ever imagined.

One month old.

She is over 8 pounds now and is even starting to get a few little baby fat rolls on her legs. She had her real first smile; she looked right into my eyes and smiled. I don't like it when people see a little baby smile and say, "Oh, she must have gas." Why does it have to be gas, can't she just be smiling?

School has started and we are settling into a schedule again. It was nice to have the girls stay at grandma and gramdpa's for over 2 weeks; the house was so clean. We really did miss them and are glad they are back. Even with a messy house and all their drama.

I love to hold Ginny on my shoulder after she nurses and rock her. What is it about holding a little baby against you? Her feather-soft hair, her warm skin and her little sigh. It seems that everything else just melts away and you are so close to heaven. I still look into her eyes and see the signs of Downs. But my 5 year old says, " I love Ginny's eyes, they are so cute." She doesn't see Downs, she just sees her baby sister. There are time that I can see her as just Ginny, sometimes I even forget for a while about Down syndrome. I can see that I need to be more like my 5 year old, like a little child. It is a slow process but it is happening, slowly. I feel like this is my opportunity, my blessing, to re-learn why we are here on earth.

I have always know the "Sunday School" answer to this question but now I am learning it on another level. We are here to gain a physical body. It doesn't have to be a perfect body and He never said it would be a body without ailments or imperfections. We suffer pain that we might be more able to show compassion and empathy for others. We are also here, without a memory of our pre-earth life, to be tested and learn to serve God, serve those around us and to follow the path He set for us. He did not send us here to get the newest and coolest stuff, to look good is society's eyes and find success in the world's eyes. It is how we are seen through His eyes that really matters. We should be humble so we can accept that He knows more than we know. We should acknowledge His hand is all things and we will know we are not alone. We should know that He loves us enough to allow us to feel pain so that will ulimatly be for our good. He also send His Son into the world knowing that He would suffer and that He would be ridiculed unjustly. I am sorry if this is turning into a Sunday School lesson but these are things that I feel deeply and it is part of my journey that I am taking with Ginny. I think sharing my feelings also helps me really believe them.

Ginny's Birth Story

Everything seemed to stop. Even with all the nurses running in and out of the room and all the commotion; I just started to fade away. I could hear people talking. “She has a chin like mine.” I heard my husband, Tim, say. But I didn’t see anything, except for her eyes. They had placed her on my stomach and we looked into each other’s eyes. Her eyes were wide open and she wasn’t crying. She was just looking at me with her beautiful but ever so slightly upward slanted eyes. Then there was nothing. In my heart I knew. I think I had known for a long time now. Why else would I have kept myself from ever letting my heart fully embrace the anticipation of a new baby? Why else was I so guarded about even telling people I was pregnant? Because I knew, I knew she might have Downs. And there she was, looking at me. Her eyes were the eyes of a baby with Down syndrome.

It was a high risk pregnancy based on my age and I also suffered from gestational diabetes again. I had an ultrasound in Denver. They told us the baby was a girl, girl number 5. “We only do girls,” we joked. We already he a name picked out, Ginny. My Aunt Ginny, whom I had dearly loved, died several years ago and I wanted to name her after my aunt. After another month or so I had one more ultrasound and that is when it started. The doctor that read the ultrasound called me later that day and left a message asking me to call her back and page her at the hospital. I felt the urgency in her voice and my heart skipped a beat. When I spoke to her later she said that there found 2 markers for Down syndrome and that I needed to make a decision. A decision? About whether or not to continue the pregnancy she explained. I was shocked, of course I did. Besides they were only risk factors not a diagnosis. I was strongly encouraged to have an amniocentesis but ultimately decided not to have the procedure. The test could result in a false positive and there was a risk of harming the baby. But I could feel the possibility of Down syndrome nagging in my heart for the rest of the pregnancy. I cried about the possibility for a few days but then pushed it to the back of my mind and would not let it occupy my thoughts. I had too many other things to worry about right now. Tim had been suffering from chronic severe back pain even after back surgery and had lost his job the previous month.

I checked into the hospital a little before 6pm on July 18th, 2011. I was given the ever so fashionable gown to change into and the nurse started an IV. The doctor came in and gave me a dose of Cytotec to help my ripen my cervix and induce labor. Then before he left he said, “I’ll see you tomorrow morning.” Things were moving along fine, I even watched some TV for a while. Around 11:00pm the contractions got stronger. I had to breathe through them as I clung to the side of the bed. The nurse came to see if I needed another dose of Cytotec. She was shocked to see that I was 90% effaced, dilated to a 7 and had a bulging bag. Within just a few minutes the contractions got much more intense and I wanted an epidural. They called for the doctor and the anesthesiologist and the nurses came in to start prepping the room for delivery. Then the contractions were so strong I could not control my breathing anymore and I started screaming with every contraction. My water broke and pain ripped through my body. The anesthesiologist came in but I was crowning and it was too late for an epidural. I realized I was going to have this baby without any pain medication and panic set it. The pain was like nothing I have ever felt before and I completely lost control. Screaming, writhing, begging and calling out to God for help. At 11:36pm the doctor walked in and as he sat down he said; “You need to push.” and with one big push Ginny literally shot out onto the bed. It wasn’t over; I still had to deliver the placenta and be sewn back together since I had a significant tear during the delivery. It was a horrific experience. I felt as if someone else had taken possession of my body. The pain lingered and I could not stop shaking. The nurse finally gave me some pain medication in my IV but all I could think was, “too little too late, lady.”

“Here she is, the incredible one,” the nurse said as I was wheeled down the hall to my new room. I didn’t feel incredible. I felt like my insides had been ripped out all I could do about it was to scream at the top of my lungs. I was embarrassed at how I had totally lost control. But it was over now and I couldn’t change the past. They settled me into the bed and took Ginny to perform the normal newborn procedures; at least that is what I tried to tell myself. Alone in the room I asked Tim if Ginny looked like she had Downs. He said she looked perfect, but I was scared. Later, they brought Ginny into the room and I held her close. Finally a Neonatal nurse came in and wanted to “talk” to us. She asked if I knew why she was there. “She has downs,” I said. It was almost a relief to say it. She went on to describe why they thought Ginny had Down syndrome. Skin folds in the corner of her eyes, crease in hands, larger space between big toes, etc. I faded away again. I don’t remember her leaving the room. My body rocked with sobs as I just let my emotions boil over; Tim tried to comfort me but I wouldn’t be comforted. I was afraid. Afraid of the unknown; afraid of what kind of life Ginny would have. I loved her, like I had loved all of our newborn children, but all my dreams for her seemed to come crashing down.

The nurses said they were having a hard time keeping her temperature up and bundled her in heated blankets. She was sleepy but able to nurse right from the beginning. They took her to the nursery and didn't bring her back for several hours said she had a high hematocrit. She spend about 6 hours under the bilirubin lights to help with jaundice. I walked down to the nursery and held her as I nursed her. She was hooked up to wires and the monitors would sound when her oxygen got too low. I had seen the twins under the lights and hooked up to multiple wires so it was a familiar feeling. I couldn't help but wish that they were wrong, maybe she didn't have Down syndrome. She had an open PDA in her heart but there really didn't seem to be any obvious differences between her and my other newborn children. We found out later that the PDA had closed on it's own and the cardiologist said that her heart looks great.

I was able to take her home with me the day I checked out of the hospital. The blood tests did confirm her diagnosis and I mourned again the child I had thought would come to our family. I had dreams and hopes and ultimately a plan for each of my daughters. But that is what they were, MY dreams and MY hopes. The plan for her life will be my Heavenly Father's plan and she will have her own dreams and hopes. She has alrady taught me to look at what this life is really about and that I needed to change some things about myself. I hope I can become what I should be as her mother.