Sunday, March 30, 2014

A bonding time with Julianna

I have written before about the way I see Julianna, and all my children, that over time, I don't see them as how they've been diagnosed, or what behaviors they seem to display, or challenges they have, that I just see them, for who they are, as children of a loving Heavenly Father. This truth was manifest to me boldly last night as I attended a special meeting with Julianna, for the first time.

Yesterday was a busy day, but the end of the day, I knew I could look forward to having some time with just my little girl at a broadcast called General Women's Meeting (a link to the entire broadcast.) This was an historic event, because for the first time, all "women" 8 years and up were allowed to attend at the same meeting. In the past, the LDS church would have a broadcast once a year for the women, and once a year for the young women, ages 12-18. So when it was announced that girls 8 and older would be attending with women of all ages, I was of course excited at first, because it meant I could bring Julianna with me! But then I started to wonder how girls so young would even benefit from such a meeting, and maybe a little selfishly, what about my time to strengthen just me, as a woman? (This last thought wasn't as pressing, but it did cross my mind).

So we went to the meeting, found a seat with some friends, and it wasn't long before I realized how inspired this new change was. The new song that was performed by a combined choir, called "Daughters in My Kingdom," emphasized how all women and girls are daughters of God, and that we can serve one another, regardless of age. As I listened, I couldn't help but think that no matter what challenges Julianna faces in this life because of her disabilities, the most important thing she needs to know is that she is a daughter of God, and that He loves her perfectly. And Heavenly Father has trusted me with Julianna, so I need to trust in Him.

The first speaker asked all the girls, ages 8-11 to stand, so I convinced Julianna to do this, and the speaker (through satellite, of course) welcomed all these young girls, and had them sing the first verse of a song called "Teach Me to Walk in the Light." Those of you that are unfamiliar with the song, here are the words:

Teach me to walk in the light of his love
Teach me to pray to my Father above
Teach me to know of the things that are right
Teach me, teach me, to walk in the light.

The speaker then asked the rest of the women to sing the second verse:

Come, little child, and together we'll learn
Of his commandments that we may return
Home to his presence to live in His sight
Always, Always, to walk in the light.

Never has this simple song, one I have sung since I was a child, hit me with more power. Listening to the first verse, I realized once again my role as a mother, to teach my children, a role that I often feel inadequate in doing, and struggle daily because of the challenges I face. And then, quite like a response to the first verse, as I sang the second one, my eyes filled with tears, as I thought about how we can learn together, but mostly learn of what's really important: the commandments, so we can return to live with our Heavenly Father. I will never think of that song the same way again. And I would never have had this opportunity to learn this truth in a new way if I weren't there with my own daughter.

Other things fed my soul that evening, my "mother soul," similar to the Time Out for Women that I attended just a week ago. But when I compare how I felt being at this meeting with my daughter to how I felt on my own at last week's event, I almost have no words. How I felt being there with my special daughter in that short 90 minutes was more strengthening to my testimony and beliefs than a whole day at the other event. And I think it's because I realized how much I need her, and how much she needs me. We need each other to become who our Heavenly Father wants us to be, to grow in the Gospel, to refine and purify ourselves. She may need me for so many things, but I need her in my life much more. We need our daughters.

Throughout the broadcast, she kept saying, "I love you." Something she's been saying to our entire family for years now, so much that we tell her to stop, as I've mentioned before. But when she said it to me last night, I didn't want her to stop. I am truly honored and grateful to be raising such a wonderful daughter. I just wish everyone could see her the way I do, and more importantly, the way her Heavenly Father sees her. She is the best daughter I could ever ask for.

Thursday, March 27, 2014

Blake's first visit to the dermatologist, and first two years

I don't specifically remember how I felt as I drove the 30 minutes with my newborn baby, Blake, and my toddler, Julianna, to the dermatologist, though I'm sure I was very hopeful. In just a few weeks I had been through so much uncertainty with him. It's always a little scary when your pediatricians can't solve a medical problem and have done all they can do to help. I just felt grateful that were were able to get in when we did, instead of waiting 4 months. I really don't think I could have gone any longer with his strange symptoms.

Dr. Barrio was our dermatologist, and after taking one look at Blake, she said, "He has mastocytosis."

I had nothing to relate this to, nothing in my Mom-knowledge of medical terms rang any bells for me when she said this word. So all I could do was listen to her describe, in as simple terms as possible, what mastocytosis was. And here is how I describe it to people when they ask:

Everyone has mast cells in their blood, which contain histamines, similar to what cause allergies. Blake has an abundance of mast cells in his blood that have to be released, and the way they do that is through the skin. So when too many mast cells collect in a certain area, it causes him to get a spot, some big, some small, some light or dark. And another way they are released is when he starts to flush, or turn red all over his body. The blisters are another side effect that form on some of the spots as well.

So now I knew why he was turning red--it was called flushing. And now I knew why he kept getting spots and blisters, mostly on the crown of his head, and his torso/abdomen. But I wanted to know if this was a lifelong thing that he would have to deal with! Dr. Barrio assured me that mastocytosis is a childhood disease, and usually the flushing and blistering symptoms go away by age 2, but the spots remain and continue to fade until he reaches adolesence.

I felt very relieved, to finally know what was going on with him, and that it would not affect him during his entire life. I just had to get through two years or so of difficult symptoms...two years...can I do this?

But Dr. Barrio wasn't done yet. She informed me that his case seemed a little on the extreme side, and that while flushing, some babies could go into anaphylactic shock and possible die. So I was prescribed an epi-pen, and educated on the symptoms of shock. And when he reached 4 months old, he would begin taking antihistamines, and a medication to soothe his stomach pain, which would also be a symptom. Blake also had to get some blood tests done to rule out systemic mastocytosis, which would me he would have the disease in other areas of his body, a type of cancer that would have to be treated. And she also stressed to me that it was a very good thing Blake was seen so early on...she wanted to monitor him closely and even gave me her cell phone number to call with any concerns I had. This was getting serious...I had an epi-pen??? He could have a type of cancer?? And my doctor's direct cell phone number? But I did feel a little better knowing she would now be aware of Blake and that she would be there to talk at a moment's notice.

I also began to keep track of how many times he flushed during the day, and when he got blisters. And every time he flushed, I knew it, because he would wiggle his little body and cry and seem so uncomfortable. I felt so bad for him, that he had this going on inside his body and all I could do was watch it happen, and hold him and soothe him as best I could. Not to mention, when he got a little bigger, those spots that continued to develop began to itch him as well.

You'll be happy to know that his mastocytosis is not systemic, it only affects his skin. And I never had to use the epi-pen or see him go into shock, but I sure did watch him every time he flushed to make sure. He was my baby that I carried everywhere--he never wanted me to put him down, even when he napped. And to this day, he's still my biggest cuddler.

And I did survive the first two years, taking him in to the dermatologist multiple times a month to be checked by Dr. Barrio. By the time he was two, I was told that he wouldn't need to be seen anymore, because his flushing and blistering disappeared. I definitely had divine help during those two years, because Blake's condition wasn't the only thing affecting our family. His first year of life I was trying to figure out what was going on with my girl, Julianna, who I will begin to write about next...I think I'm ready to dive into that now.


Monday, March 24, 2014

Guest Post: Jason

So excited for my second guest post written by my good friend Melissa, whose oldest child has Down syndrome. Her son has gone to school with Julianna since they were little and they are only a month apart in age! Thank you, Melissa, for sharing your story. If you or anyone you know would like to post in the month of April, email me at

My name is Melissa and I have a son named Jason who just happens to have Down syndrome. He is ten years old and the oldest of my four children. I will not attempt to share all I have learned or experienced as the mother of a child with “special needs.” I hope, however to give you a glimpse of what treasures I have found on this journey of mine.

            As I stated before, Jason is my first born. I was 27 years old when I gave birth to him. It was a difficult pregnancy and birth. During the pregnancy I gained 60 pounds, had a fibroid tumor (a benign tumor of the uterus),and towards the end of my pregnancy broke out with the pruritic urticarial papules and plaques of pregnancy (PUPPP) which is basically a rash on the abdomen and other parts of the body. At the time we lived in a trailer and it was during the hottest part of the summer. I also had polyhydramnios which is a condition when pregnant women have an excess of amniotic fluid. Needless to say it could have been worse and none of these conditions are life threatening but do not make for much fun! I was monitored by a specialist for the majority of my pregnancy and was told that my son may have a chromosome disorder. We never received an official diagnosis until after his birth because I declined the amniocentesis and my alpha-fetoprotein test to determine abnormalities in my unborn child came back a false negative. It did not matter to me if my son had Down syndrome. He was my child and I his mother. Nothing was going to change that.

            So, after being a week overdue and 16 hours of labor, Jason went into distress and an emergency c-section was performed. I was able to see him for about 20 minutes until he was taken to a children’s hospital where he would spend the next 9 days, of which the first 5 days I spent apart from him in the hospital I gave birth in with my own complications. It was a hard experience for my first time being a mother, but God prepares us and provides the help we need when we truly need it. It was not hard because my son was diagnosed with Down syndrome, but because he was my baby and I wanted everything to be alright.

             And it was….Jason does not have major health issues….at birth it was initially respiratory issues from a complicated labor and the time in the hospital was due mostly to an extremely high bilirubin level and monitoring for a transient leukemia. For the most part he has struggled with chronic sinus infections and Celiac disease (an allergy to wheat and gluten).Of course we have spent our time with specialists throughout the years as most parents of children with special needs or health issues do. We are currently trying to rule out seizures.

            So far, this is pretty boring and probably nothing new, but I wanted to give the background of our story to make the point that sometimes what might seem like a hard or difficult situation really turns out to be a blessing and doable. The things that we think are so hard to go through are hard, but when faced are bearable, because a mother’s love gives her the strength to meet the task ahead. Our love for our children outweighs the feelings of inadequacy, fear and doubt we may have.

            Now, I will fast forward ten years (someday maybe I will write again about my day to day life with little Jason which is eventful to say the least). Jason is a lot of hard work and a lot of fun. He basically has two modes. The first is what I call the “Dennis the Menace” mode and the other is “My Sweetheart” mode. If there was a third one it would be “The Sick” mode for when he is ill…no fun…high fevers…puking. What have I learned? He is my son first and always has been; he just happens to have Down syndrome. Why?  I do not know, but I am thankful. However, having Down syndrome is part of who he is and part of what makes him so beautiful! I have thought at times what life would be like with just my girls (ages 8, 6, and 3). It would probably be a lot easier but I would not be the same person and neither would they.

            I really think we get the better end of the deal with having Jason in our life. It is he who teaches us about what really matters and about unconditional love. His laughter is contagious. When he smiles…my heart melts. As I sat earlier to start writing this I was having a bad day, I was sad and he must have known it. He brought a chair and placed it right next to mine. He plopped down in the chair and put his arm around me and just looked at me with a smile. He was happy to let me continue writing; it was like he just wanted me to know he was there and that he loved me. How often do we do that as adults? Usually someone has to beg for our time because we are too busy. Anyhow, there is so much I wanted to write and did not. I wish that each person who reads this could meet Jason. Below is a poem that I wrote on his behalf.

My Name is Jason     

My face is a little different                                                                                             

And so is my speech

I do things a little different

Though, I am a lot like you

Some things are the same

I need to be taught and loved

And given a chance to make gains

It may take me a little longer

To do what I want to do

But with patience and work

I will improve

My mom says my job is

Helping her to appreciate all

Of the little miracles that most

People don’t see…

Like appreciation for the little

Blessings that God bestows,

Being able to say more words,

Being able to communicate a need,

Understanding what you say to me

Mom says God made me special

I have Down syndrome you see

And though sometimes it’s hard for Mommy

And sometimes even hard for me

I make this world a better place

Just by being me.

I love people unconditionally

They do not have to be pretty or smart

I see as God sees for He looks upon the heart.

My face lights up with the simplest of joys

I find happiness in being with my friends

And not just with my toys

I want to do the things you do

Play football and have fun

So please help me to feel a part of

And loved…


Written By: Melissa, for my son, Jason



Sunday, March 23, 2014

My Time Out for Women Experience

This past Friday and Saturday night, I had the wonderful opportunity to attend an event called Time Out For Women. There are inspirational speakers from all walks of life, beautiful musicians that share their talents, and overall a great uplifting experience. Here are some of my favorite quotes that stood out to me:

"Take the rain with the sunshine."

"It is not the length of our life, but the depth that is important."

"We dream to make meaning of our lives."

"Righteousness will come to pass when you dream."

"Rise to the stature of your divinity."

"The trick is to enjoy life today, not the better ones ahead."

And then, in a poem shared by one of the speakers, my entire life seemed to stand still. Suddenly I had more clarity and understanding in my life than I've had in a long time. This one statement applied to me so much that I was in tears, bawling, and couldn't stop. So here it is:

"I got nothing I prayed for, but God gave me everything I needed."

Now, I guess you could say this isn't entirely true, I have gotten things I've prayed for. But what about those things that I did pray for, fervently, with all my heart and soul, and then I didn't get them? What about those times?

For example, what about the 8 months of praying during my pregnancy with Nathan, every single night, that we would have a healthy, normal baby with no complications? I like to think that I have great faith, and I was very confident that my Heavenly Father was aware of my current situation with Julianna and Blake. I had my hands full! But I knew it was time to have another baby, so we did. And I wanted to have a baby that I could just love without worries or scary moments or lots of doctor visits. I really didn't think that was selfish of me at all to want this. So when Nathan was born, and we found out he had the cleft palate, it was a huge shock. How could our prayers have not been answered? I remember the silence in the room after the nurses had finished their brief explanation about bilateral cleft palate. I've mentioned before that I felt a peace and confidence come over me soon after that visit from the nurses. But if I'm to be completely honest, before that peace, there were definitely some thoughts, during that silence as Joel and I sat contemplating what we were just told, that veered toward the "why us?" and "how could we be given another child with specific needs?" Especially after praying so long and having as much faith as possible. We prayed for a baby without challenges, but we were still given one anyway. How could this happen?

But wait...what about the other half of that quote? ...God gave me everything I that why very soon after these thoughts, I felt a peace and comfort come over me? I began to see very soon after his birth that our prayers are not always answered in the way we hope them to be. And sometimes that is hard to accept. It's only after we move forward, and trust again in Heavenly Father, that we see how much we needed what we didn't pray for, if that makes any sense. My faith wasn't done being tested yet....and I know now that this baby is helping me learn things I haven't learned from my other children. He is taking me on a new journey and helping me become an even better mom than I ever thought I could be. So yes, my prayer was not answered, but God did give me everything I needed in my little boy Nathan--he gave me a new level of faith, courage, and understanding that I didn't have before. He gave our family a little baby boy that we all love and cherish, that we laugh at, and that has brought us closer than ever before. He gave my children a little brother that they can learn to love and accept and teach and cuddle. And he gave me another beautiful redhead, too.

It's true, my life as a mom is nothing what I expected it to be. I never imagined I'd be a mother to such unique children. But what I do know is Heavenly Father knows what each one of us needs to learn while we are on this earth, and what I am learning is exactly what I need to be learning. As I go forward with this blog, I hope to find many more of you out there and to learn from your stories as well. Attending this event also helped me realize how important it is to share our struggles and joys, because it makes us all stronger in the end. I feel like a completely different person now. I know what I need to be doing, and I will keep on doing it!

Thursday, March 20, 2014

Julianna's decision

Today Julianna surprised me in a big way. She made a decision all on her own, and gave me the reason for it. This is a big deal. First, let me explain what has led to this decision.

Before she started third grade the school year before last, I asked if she wanted to play the flute in school. Mistakenly, I thought kids could start playing instruments in third. So her then special ed teacher asked the music teacher, and we were informed that it doesn't start until 4th grade. But of course, I had already gotten Julianna's hopes up in playing the flute. Now those of you with children on the spectrum, you know it's very hard to turn back on an offer you've made to your child. If I were to tell her sorry, you can't play your flute until 4th grade, after she had been looking forward to it all summer, we would have a big problem. So, her teacher persuaded the music teacher to allow Julianna to start a year early. I had an extra flute that she could bring to school, and things worked out fine. Everyone was happy.

This school year also happened to be the one where I was trying to secure a one to one aide for Julianna. Right around the time it was approved (I will talk about this process another day) was when the music classes began. And as luck would have it, her aide, whom we love dearly, just so happened to play the flute when she was in school. So she took Julianna to her flute class once a week and things seemed great! She is now in the second school year of doing the flute, with the same wonderful aide, and I thought everything was fine. Until this morning...

Usually in a rush to get out the door, we forget the flute on Thursdays. But today we remembered. So I asked her to get her flute and go to the car. Well, when I came to the car, she did not have her flute. So I asked her to get it again. She put her head down, and quietly said, "I don't want to get my flute." So I asked her why, and she said, "I don't want to play the flute anymore."

Many things went through my mind at that moment. First, you should know, that I also play the flute. I started in 6th grade and went all the way through high school, and loved it. I still play musical numbers at church occasionally, and now play in a small orchestra through our church. I love music. Now you're probably thinking that I convinced Julianna to play from the beginning, that I'm one of those moms that wants her kids to take after them. This is not true. I simply asked her, and she said yes, and I had the extra flute she could use. So, hearing her say she did not want to play did not crush my soul, it just worried me. It made me wonder how long she has felt this way, and how long she waited to tell me that she didn't want to play. I asked her why she doesn't want to play anymore. Her answer, "Because I still can't get the sound out."

Now this broke my heart a little bit. She's been trying all this time and still can't get a sound out of it. Her aide never mentioned this before, so I assumed little by little she would get better, though she is young. And me, the busy mom of a baby now toddler during this whole time she's been playing only sat down with her a handful of times to practice, even though I can teach her so much. I felt guilty, that it was partly my fault she could not get a sound out of it. Why didn't I practice more with her? But, I can't change the past, so I reassured her that it's fine if she wants to stop playing the flute. And she said, "Please don't tell Miss Shauna (her aide)," as if she would get in trouble! I told her I needed to tell Shauna, and that it was perfectly fine that she wanted to stop playing the flute. So when we got to school, we told Shauna, and she seemed to understand completely. We discussed maybe trying the drums. And that was the end of Julianna's flute career, for now.

But as I drove home this morning, I couldn't help but think how silly it was for me to think that a child with sensory processing issues could even play the flute at this age! It involves muscles in the lips that she probably cannot control yet, fine motor skills in using the keys, eye coordination in reading the music...this is a huge challenge for someone like her! I am not saying she's not capable, because maybe she really is! But right now, at her age, it was probably a little too much. And I think she feels better by telling me, too.

I'm proud that she was willing to tell me the truth, even though I could tell she didn't want to admit it to me. I'm even more proud that her level of understanding has evolved to the point where she gets why it would be hard to tell her mom she doesn't want to play the flute anymore. The progress she has made astounds me. So now we'll have to see how the drums go...

Monday, March 17, 2014

Plastic Surgery Visit Today--Update

A while back, I mentioned that Nathan would be going to see his plastic surgeon to determine if he will need another surgery to repair the small hole, or fistula, that developed after his first surgery last August. Well, today was the day! And on St. Patrick's Day as well! Driving there this morning I hoped the luck of the Irish would be on my side.

And of course, as I drive to every appointment, I recollect what I've been through with this special little baby boy. More doctor visits than I care to remember, one too many cancelled surgeries, but in the end, I think how lucky I really am. Nathan could have been so much worse off--he could have needed a feeding tube, he could have had failure to thrive, he could have been delayed developmentally because of the Chromosome 22 duplication, he could have had vision or hearing problems, but none of these things have affected him. All that really happened was one tiny hole after a surgery that caused him so much pain. So I try to tell myself that in the grand scheme of things, this hole is nothing at all.

And I also think back to when he was a newborn, and I was learning how to feed him, and how I couldn't nurse him. There are very few reasons why a full-term baby cannot nurse, and cleft palate is one of them. And then when he could use suction, for the first time after his surgery, it was a miracle to me. I will never take for granted a child's ability to suck on a bottle! What I have been through with this little guy has forever changed my perspective on parenting, challenges, and miracles. And before he was born, I thought I had already been through a lot! I just feel grateful to have been given such special, unique children.

But I digress...back to the appointment today that had me in another moment of suspense. Dr. Martin came into the room, took a good look at Nathan's palate, and determined that he will NOT NEED SURGERY RIGHT NOW! More blessings. He said the hole is smaller than the last time he was seen in November, that it is now right below the nasal bridge and in between two small ridges on the palate, and is so small that it really will not affect his speech development in the next year. He wants Nathan to come back in 5 months to check again, and then after age 2, if the hole is still there, he will require surgery at that point. To do a surgery at this age might cause problems with the growth of his jaw.

So, so happy right now. So happy that I can enjoy this summer with my family, without scheduling surgeries that end up being cancelled. We can be stress-free and worry-free, the first time in a long time. I couldn't ask for more than that.

Friday, March 14, 2014

Blake's Birth Story

Now that you know all about Nathan and his cleft palate, I am going to move on to Blake, my second child, who is currently 7 years old.

Blake was born on November 16 2006, three days early. I was 24 years old, we had just moved into a brand new townhome a few weeks prior, and I was starting to have my suspicions about Julianna, though I couldn't put my finger on it yet. My husband was in the middle of his first year teaching high school English. Julianna was almost 3 years old. I remember laying on the bed with Julianna, just half an hour after Joel left for work. We were enjoying our cuddling, and then it happened--my water broke. Such a strange sensation. So I called Joel, told him to come back home, my mom, who was then living only 1 hour away, arrived to stay with Julianna, and off we went to the hospital.

The labor and delivery went beautifully--no complications at all. They tried to give me pitocin to induce labor more in the beginning, because as it turned out, my water didn't completely break, just part of it, somehow. But the pitocin was causing Blake to have an irregular heartbeat, so that was stopped. Instead they broke my water completely, and within a few hours, he was born. Another beautiful redhead. And a big one--8 lbs 14 oz. He looked SOLID. Like a little body builder with broad shoulders and a big torso--just a solid little boy, especially when we looked at him next to the other babies in the hospital. He nursed very well (something I will never take for granted after having a cleft palate baby) and everything looked great!

Except for those two little spots on his abdomen...what were those, we wondered? They looked like birthmarks, but were a little big, we thought. We weren't that concerned, but just in case, we asked the doctor what he thought. After taking a look, he said, it could just be a mark from the trauma of delivery, or maybe the cord was wrapped around him at one point, or maybe they were just birthmarks. He wasn't worried at all, so we didn't worry, either. We went home from the hospital with our newest addition to the family, excited for Julianna to have a brother.

It wasn't long before we actually began to worry. Within the first few days of being home, we began to notice strange symptoms. First, it was how red and splotchy he looked, most of the time, almost like he had a sunburn in different places. I remember nursing him one morning, and just looking at his sweet face, and seeing the skin right around his nose and under his eyes slowly turn red, and little by little, it would spread over his entire face, and pretty soon, his entire body was red. And while this was happening, he was squirming, and uncomfortable. I called the doctor, and they brushed it off as a newborn thing and said not to worry. But it kept happening, a few times a day, and I could tell he didn't like it.

Then in the first week or so, those two spots on his abdomen began to form blisters. Raised blisters that did not look good at all. And it seemed like there were other little spots, near the crown of his head, and on his back near his shoulder, that began to surface. So we took him right in to the pediatrician. They looked at the blisters and thought it must be impetigo, and prescribed some cream. Well, we tried that for a week, and that didn't work at all. He continued to blister, and to turn red all over his body. When we took him back to the pediatrician, they didn't know what to tell us, other than to send Blake to a dermatologist. We were finally going to get some answers.

After we got authorization for the dermatologist, we called to make an appointment. Unfortunately, they were booked for the next 4 months. We pleaded with them to see our baby--something was really wrong. We described the symptoms and how scared we were, but the best they could do was put us on a cancellation list. Luckily, the very next day, we got a call, and they asked if we could come in tomorrow. Of course we could! So we were on our way to get the answers we had been looking for. Blake was just 3 weeks old...

Tuesday, March 11, 2014

"Life is Never Without Hope" - Accepting differences

Today I watched a phenomenal episode of "Call the Midwife." A woman gives birth to her third child, a son, and soon after birth it is determined the baby has spina bifida, and has to be taken to the hospital to have surgery. The story continues showing Nurse Lee, the midwife, helping this family learn to cope with a child that will be different, that will never walk, or live to an old age. In the beginning, this mother can't even hold her baby. Nurse Lee comes every day, helping her with daily tasks. She then goes on an errand with another nurse to a home for special needs children that have been abandoned, or given away at birth because the parents could not care for them, or didn't want to care for them. You see many children with all kinds of challenges walking the hallways.

She then returns to the home of the grieving mother, and finally gets her to go outside for a walk with the baby, only to have a nasty neighbor say rude things and cause her to retreat back into the house. When Nurse Lee checks on her later, the mother says it wasn't the neighbor who upset her. And then she says something that hit me to my very core: "If I hold him, I think I might die with a sadness." She then asks why the doctors bothered to save her baby, if he will need so much care and won't live to an old age. And Nurse Lee responds, "Life is never without hope."

In the end (SPOILER ALERT!) this lovely mother does hold her child, does see him for who he really is, and loves him, unconditionally. But only after going to that very same home of special needs children, where her husband "pretends" that they need to take their baby there right away because it's the best place for him. So they begin packing the baby's things, and suddenly this mother looks down at her baby, and picks him up, and says they will not take him anywhere. She sees the hope in her child. Her husband knows she will be okay.

This episode made me think about all the many things that can happen when a baby is born, things that can go wrong, things that can cause a baby to have a lifelong disability, and how that can drastically change the experience of motherhood. This poor mother only wanted to have a healthy baby, and suddenly that was taken from her. Suddenly she has a baby that might not live past his teen years, who will suffer extreme challenges in his life. The joy, temporarily, is taken away, and replaced with sadness, so deep that it can cause one to feel near death. As one of my good friends wisely said, "You mourn the loss of your child." It is true, you mourn what could have been, you mourn for the future that might be taken away.

I know exactly how this mother feels. I have felt this same thing, three different times. With Julianna, there were times, in her early years, that even thinking about her challenges made me feel like I would die with a sadness. With Blake, whom I will talk more about soon, his infancy worried me to no end with his mastocytocis--I was constantly on alert, watching for signs of anaphylactic shock every time he flushed. And with Nathan, there were very small moments, in the early hours of his life, when I didn't have all the answers, where the sadness came over me. This is part of the process, the grieving process when you discover your child has a disability or health problem. The sadness, very similar to losing a child, is enveloping and suffocating. But, with time, that sadness goes away, and gives way to hope, hope in the future, hope in the present.

To any of you in this grieving process, I want to say to you, it doesn't last forever. You will be able to move on, to find the hope, to cope with what you have been given. With each one of my kids, receiving each diagnosis was hard, excruciating. And every time I would look at my children, I would see them as what they have been diagnosed with. It's all I could think about, for a long time, the diagnosis that made them different. I worried what others would think. I avoided certain situations. But then something miraculous happened. I suddenly saw my children, JUST my children, and not the diagnosis anymore. I saw them for who they were, right now, not what they might be, or could have been. I remember the exact moment I felt this, for each of my children, and it is the most liberating feeling.

I know it may seem like I talk a lot about what makes them different, which I think is still important to do, because making others aware of the differences can bring acceptance and understanding. But my hope is that others will see my children the way I do--as children of God, created in His image. I have hope in my children. And I hope you all have hope in your children as well. Right now you might just see the diagnosis, but that will change. Soon you will just see the child, and that diagnosis, though still there, becomes who they are, becomes part of your normal life--it doesn't make them different anymore. I'm not saying it will always be easy, because I still have challenges with my children. But I have accepted their differences. I have grieved and mourned. And now I am trying to spread hope, and make a difference in the lives of other families with special needs children. "Life is Never Without Hope."

Friday, March 7, 2014

Typical conversations in our family, maybe not typical for you

*For future reference, I will be using just my kids' first names on my blog. I had planned to use nicknames to protect their privacy, but I think first names will be easier.

Today on the way to school, Blake asked:

"Mom, you know how Julianna has to say 'I love you' all the time, and has to get an answer or she will keep saying it and then get mad?"

Me, smiling to myself, thinking about how many times she says 'I love you' to each of us every single day. Well, not Nathan, yet, but I'm sure once he starts talking he'll get the same thing.

"Yes," I replied. "Did she just do it again?" Looking at Julianna in the rearview mirror, "Julianna, you can't say 'I love you' to Blake anymore today, okay?" Julianna quietly responded yes, but doesn't sound very convincing. She has to say 'I love you' all's her thing right now. It's been her thing for a quite a while. Those of you with special needs kids might understand this a little better.

Blake continued, "Well, how come when I don't answer, after she says it over and over waiting for an answer, she hits me? But when you don't answer, she doesn't hit you? It's not FAIR!"

He made a good point. "Well, because I'm her mom, and she can't hit her mom!" Looking at Julianna in the rearview mirror again, "Julianna, don't hit Blake when he doesn't answer you, okay? Be nice to your brother. And don't say 'I love you' so much!" Again, Julianna quietly responded yes, not sounding very convincing at all. Then Blake chimes in, "Yeah, Julianna, I'm exhausted!" First time he'd ever used that word. And he used it in response to his sister's words of love. Only in my house, I tell you.

The irony in this situation is hilarious. Here's a sister, telling a brother, that she loves him. What a kind thing to say, right? Well, imagine being that brother, who hears his sister say this to her, on average, about every 5 minutes. Saying "I love you" would get old pretty fast. But to make it worse, if he doesn't reply with an "I love you, too" or "thank you" back, she will keep saying she loves him, over and over, until she's so mad that she hits him. She hits him because she wants to make sure, every five minutes, that he still loves her, too.

We've explained the silliness of this scenario many times to Julianna. "Why do you say 'I love you' over and over, until the 'I love you' sounds like an angry one, and then you hit him?" Really, you'd have to hear me saying this to hear the humor. Her "I love yous" go from happy to angry to aggressive. The great thing is, she understands this is funny. She knows that it doesn't make sense to hit someone after you tell that person you love him. When I imitate her, she laughs, and says, "I don't know why I do that, Mommy."

Welcome to my life. Trying to decipher why my daughter does certain things. Why she has to repeat specific phrases, over and over again, and why it makes her mad when it doesn't always go the same way. Trying to discover a way to help her overcome those things. Failing miserably, over and over again. But never giving up. And sometimes, accepting those things as just part of who she is. If she wants to say "I love you" all day, then I'll take it. At least it's not something horrible that she's repeating. We know she loves us, a lot. What could be better than that.

Tuesday, March 4, 2014

My mothering skills, or lack thereof

Right now, I have a horrible headache. My throat hurts terribly. I'm exhausted. No, I'm not sick. I'm describing how I feel at the end of every single day lately. How did this mom thing become so hard suddenly? I used to have control over my kids...they used to listen. They used to care when I spoke. Now it's like I live in opposite world around here. Or maybe I'm the invisible woman, or a fly on the wall, because for some reason, whatever comes out of my mouth rarely even registers in the ears of my two older children. Where did I go wrong? I spent years teaching them please and thank you, be soft, be kind, share your toys, clean them up. What happened to all of that?

Okay..I have a confession. That horrible headache, that sore throat, those are not symptoms of a sickness...those are symptoms of my awful parenting skills. That headache, that sore throat, they are a result of my YELLING. Yes, I'll admit it. I yell at my kids, on a regular basis. Somehow my dominance, my presence, has withered away into almost nothing. My 7-yr-old boy tests me like a courtroom attorney. I say one thing, he rebuts with an almost perfectly executed argument that I'm sure would take at least a couple years of law school to come up with. Where did he learn this? How does he always come up with an answer that makes my request seem futile? HOW DID HE GET SO SMART? And why can't my mom brain come up with a good response to his clever statements? Oh, that's right, because I usually have a headache. And I'm tired. And my house is ALWAYS a disaster.

And then my daughter on the autism spectrum with her intense sensory needs...and her desire to follow her peers...having a brother like him does not help very much. Yes, they usually play well together, which I am grateful for. But if he doesn't listen, she doesn't either. If he's acting out and being too rambunctious in the house, she will do the same. If he's standing up to my requests, she will, too, in her innocent way. She wants to be like him. She models what he does. She is learning social behaviors from him. And that is not always a good thing.

I'll admit right now...I have an anger problem. Like, a serious anger problem. I probably should be taking anger management classes, because my anger is always there. And this leads to the yelling. And then the headaches, and sore throat. It's a vicious cycle. Where did this anger come from? Why am I so angry all the time? I never used to be this way. When my daughter was a baby over 10 years ago, I remember taking her to the grocery store, and I saw a mother scolding her little boy very firmly, too loudly, I thought, for a public place. And my thought was, I will never treat my kids like that! If only I knew what the future held for me...

So this anger...right now I am trying to figure out where this anger comes from. Some nights I end up crying to sleep--the anger actually is so much that I'm tearing up about it. I don't like feeling this anger all the time. I would say 75% of that anger is because of the lack of control that I have. A few years ago I had the privilege of meeting with a wonderful therapist. He sat down with my husband and I, and after hearing about our then two kids and what we were dealing with, he looked me in the eye and said, "You need to realize something right will never have control over your situation with your daughter. The behaviors she displays often cannot be controlled. Instead of trying to fix them, put on ear-cancelling headphones and walk away. Come back when she's done." I've tried so hard to take this advice, because it's so true. I don't have control, over a lot of things. My kids have their agency, their ability to make choices, good and bad. My job as a parent is to help them know the difference between good and bad, and guide them toward the good. So why do I just get angry instead? Why do I explode like a teapot? All that hot air around the house surely can't be good.

The other 25% of that anger is from sometimes feeling hopeless about my situation. My children have challenges. My daughter's future is unpredictable. My son tests me to my limit every day. My little baby's future is also uncertain, as far as surgeries and speech and development go. I don't have all the answers yet. I HAVE NO CONTROL OVER ANY OF THIS. Of course every parent wants perfect children, children that have no disabilities or surgeries or health issues. What I am starting to realize is that my role as a mother is harder than I ever imagined. And most days I just don't have it in me to be that perfect mom that I wish I could be. And those days I am not perfect, the guilt sets in, big time. Most days I feel like I just can't do it anymore. But then I wake up the next day, and try again.

I told you all I'd tell it like it is. This is how I am feeling, right now in my life. And I'm thinking some of you might feel the same way, for different reasons. Being a mom is hard! I know things won't always be crazy and chaotic. I know that eventually my son will show more respect. I know that my daughter will reach the potential she is supposed to reach. I know my baby will as well. So I just need to find a way to let that anger go, and the yelling. Because going to bed every night with a sore throat and a headache just isn't fun at all. I know that this life is a time to be tested, to prove that we can endure to the end. These precious children I have been given are to help refine me, to shape me, into the person I need to become on this earth. And to help in that, we are given the greatest gift of all, the atonement of Jesus Christ. It's so easy to forget this gift, to forget that it can relieve us of our burdens and cares. I know that the atonement can take my burdens away. Here is a wonderful video on the atonement.