Sunday, April 13, 2014

We Bring This Child Forward

Evan blessed my baby today. My beautiful baby. All in white. She's precious. She's sweet. Charlie is the piece that has been missing in our family--she makes every one smile and awe. I can't keep the little hands, faces, and loves away from her.

For those of you who were there...thank you. It has felt lonely in my life for such a long time, at least the last year. We haven't made friends in our new ward (which they reorganized today, so I'll start in a new ward in two weeks). Old friends have not kept in contact. It's felt lonely, and while there have been good friends and family who have stuck by us; but it mostly feels like Evan and I have clawed along for so long.

So to see so many friends come to support us, people we love, people who love us, come and support us. It buoyed me up. I felt the camaraderie that has been missing from my experience in the Church lately. I felt Mosiah baptismal covenants, my baptismal people.

For those of you who couldn't make it to her blessing, this is the blessing Evan gave her.

Our Father in Heaven, in the name of Jesus Christ and by the power of the Holy Melchezidek priesthood which we hold, we bring this child forward to give her a name. And the name by which she will be known on the records of the church and in our household is Charlotte June Young. 

We also come forth together to give this child a blessing. Heavenly Father, we bless this child that she will have a complete and full understanding of the nature of the gospel. We bless her that she will understand the divinity that she is.  That she will go forth through life knowing and respecting herself. That she will go forth through with the strength and power that she has because she is a daughter of God. 

Father, through bringing this child into the world we know that it has been a struggle that it is something that we have prayed for, that we have hoped for, and that it is something that we have endured. We ask now at this time, Father, that thou wilt take those experiences and thou wilt endow her with an increased amount of intellect and strength of will, that she will as she goes through life, use these experiences to inform decisions that she’ll make. That she will take these experiences and that they will grow into more experiences that will build upon themselves and give her guidance. We ask, Heavenly Father, that Thou wilt do these things for her.

Please Heavenly Father, bless her body that it will, that her constitution will be sustained, that her bowels will be protected. And we say this in the name of Jesus Christ, Amen.

I was very impressed with Evan. We've discussed the different methods parents use to prepare for blessings. Evan believes in just speaking from the promptings Spirit in the moment, but he had a prompting this morning before the blessing. He really felt like he needed her to know that no one can take advantage of her and she will never be less than because she is a female. I thought he did a good job in communicating that and it touched my heart that he wants to teach her that from such a young age. 

My sister took most of the pictures today on her camera. But when I get more, I will hopefully remember to post them here. 

Sunday, April 6, 2014

1:00 am

It's 1:00 am.....

and I have no good reason why I am not asleep. This......

She is not the reason either. She's been sleeping through the night since early into her 7th week. Honestly, right now she'll sleep 15 hours a night, for several weeks now, except we dream feed her at 8 or 9pm so she gets more calories.

So why am I not sleeping??? I just don't know.

You might find more posts as I work through my insomnia, or as I try to find ways in which I am not counting the minutes every night.

Here's to long nights and unproductive tired days.

Tuesday, April 1, 2014

Sicko Once Removed

These are my babies, granted this was a few weeks ago when my kids had crazy hair that made them look younger.

Kyle and Aiden have diagnosed eosinophilic enterocolitis, GERD (reflux), and periodic limb movement disorder (PLMD). Kyle also has diagnosed anxiety and ADHD. Kyle is triggered by dairy. Aiden is triggered by dairy and gluten. Both experience flairs and disease process unrelated to food triggers. Both are on an antacid, a sleeping pill, and an immunosuppressant. Kyle is also on a motility drug. Aiden is on an antidepressant used to treat severe abdominal pain on a nerve level. Charlie also has GERD (reflux), and she is struggling with gaining weight. She is on a reflux drug and struggles with self-soothe. She just is not thriving. And I see a road very similar to Kyle's in her future.

That makes me a mother of three sick children. Three diseased children.

And so begins the problem, because I can't seem to even find a good way to describe or classify my children. Sick? Disabled? Diseased? Compromised? Chronic? Affected? Patients?

Kyle is my oldest, smallest at birth, most affected medically. He struggles. He struggles with behavior. He struggles with food. He struggles with memory. He struggles to feel loved. He is my difficult child in so many ways. But Kyle is also brilliant. This was his most recent present because he asks questions like how do red blood cells come from the inside of a bone and into the circulatory system.

For Kyle, I read "The King Follett Sermon" in order to read to him the parts about the nature of God. Kyle had asked me, "Did Heavenly Father live on this earth?" I wanted him to make his own decisions on the answer.

Kyle is my sickest. We are at nine surgeries. Nine. At five. Nine. Nine. That number scares me, because it is only within three years. Nine. Nine times with the mask. Nine times on the table. Nine times. Do you know part of our doctor kit at home involves tourniquets from blood draws and masks from anesthesia? Kyle explains how to use these to his younger cousin who comes to play.

My Kyle is brave. And as his parent, I've held him down while willingly allowing doctors to cause him pain. I've held him down while they have shoved a tube up his nose. I've held him down while that tube has caused him to bleed. I've held him down while they've shoved another tube up his nose to measure acid. I've held him down while they have dilated his stoma (hole into his stomach) and shoved his button back in. I've held him down and said, "Go ahead." Go ahead, hurt my child. I know you are going to hurt my child and I say go ahead. And I do this by myself. I do this because my husband can't be at the numerous appointments. I do this because who wants to go with me to all the medical things we do. I do this alone 98% of the time. I say, "Go ahead." Go ahead and hurt him. I make sure Kyle knows it will hurt and I say, "go ahead."

I'm the mother of sick children. I am the mother of doctors visits, tests, labs, paper work, jargon, drugs, procedures, and surgeries. You don't know what it means to be a mother of sick children. These are my feelings and I want to explain them to you, but it is like trying to explain how water feels....wet, slippery, slimy, cold, warm, wet, changeable, and ever moving.

My Aiden. My Aiden is my baby, even though he isn't. But I've never met a sweeter, snugglier, lovable boy. He is infatuated with Charlie. He is malleable and easy going and makes a great playmate for his cousins. He is so sweetly and sincerely remorseful. He was big. 9 lbs big. He grew on target. But now. Now not so much. Now we've plateaued. I think, when did we last change the size of your clothes? Why don't you feel bigger? Why do you still fit so well on my lap? Why are you not eating, when several weeks ago you were always ravenous?

Upon hearing his heartbeat today through the doctor's stethoscope at his appointment today, he said, "I hear the beat, beat. My heart is pumping my blood." My three year old. My three year old knows. I worry. I worry about why he is so tired. Why he lays on the floor. Are the drugs not working? Is he telling me his stomach hurts more than usual? Is this vomit disease progression? Does this warrant zofran? Why is he getting out a vomit bowl for bed so frequently?

Why does he spend all morning crying? Why does he cry all evening? Why is he regressing on independence? What changed? Not his diet. How do I comfort him? Where did he go? Why does he hurt? How do I discipline him, while recognizing that he is not my Aiden? Does anyone know?

Charlie is my newest baby. Right in the middle of my boys in weight. Sweet. Calm. Lovable. It is hard to win a smile from her, but the smiles are so sweet. Her nose is such a smile button. Her face screams to be kissed. Even my niece, at 18 months, knows she is something to be protected and loved on. And oh, is she loved on. Yet, she earns the gold medal on slowest eater! A few ounces in 45 minutes. My patience for her slow eating does not even light a candle to her patience for toddler love and play.

We quickly moved her to hypoallergenic formula. She just wasn't tolerating my milk well. The Church's statement on breast feeding states something to the effect of a baby is almost always able to tolerate their mother's milk. Although, I know that my children happen to be in that small percentage that cannot, it hurts. It hurts that I cannot breast feed my children. I wonder if people who see me in public with a bottle they know that I strongly support breast feeding? Don't they see? Don't they see that it is not my choice? Don't they see?

I see her face. And I love her, but my worries: when did you poop last, why does it keep changing consistency, does it seem oily today? Why were you eating 4 oz bottles, 6 times a day, and although it took you a long time, you did; now, getting 2 oz in is such work of coaxing? Why? Why did you become fussy?

The doctor upped her reflux medication today. He changed her formula. He suggested we buy a caloric enhancer for her formula (which we immediately did). We go back in a week to see how she is doing. Right now she is 25% for height, but only 3% for weight. That means Charlie is way too skinny. She hasn't been growing at the right rate; her percentiles have dropped significantly in the last month.

Almost daily someone mentions, "She's so tiny." They see it as dainty, petite, sweet. I am reminded of her growth at every mention. How her clothes aren't getting tighter. How her eating has dropped off. I see surgeries in her future. I worry about the need for a feeding tube. I know how this could go.

I want you to know, most days, we are a normal family. Visits to the zoo, aquarium, and IKEA. Kyle takes karate. Aiden never stops moving and has mastered most every sport on the Wii. Kyle is learning to read and Charlie is strengthening her neck muscles. She likes to be worn. I make freezer meals and worry about keeping Kyle from ripping holes in his pants. And do mountain and mountains of laundry. Normal. Normal. Normal.

Yet, when you find out, you had no idea that my children were sick. Of course you didn't, we are normal. Now, you look at us differently though. We are not heroes. This is just our life. We don't need your pity. It's our normal life. I always carry the necessary medications, I plan our meals and snacks if we are out. Kyle knows what he can and cannot eat and Aiden is learning. Even their cousin knows their specialized diet. I stock their foods at my in-law's and my sister's houses. This is my life. I am nothing to be applauded or told how strong I am. If this was your child, you would do it to. You would. You would step up, without a thought. We are their mothers.

And yet sometimes, when I drive along the eastern bench on the way to Primary's or home from an appointment. Sometimes after surgery when I realize how normal this is. I cry. I cry because I still mourn the loss of "normal" my children will never experience. My Aiden has never had lunch from the blue box of macaroni goodness. My children don't eat cheap McDonalds ice cream cones. Aiden and Kyle have only had donuts once in their life, ones I made that were nothing like the light yeasty goodness I regularly crave. Their lives are different. Will they serve missions? Will they need bowel resections like many Crohn's patients? Will Kyle always have a button?

Kyle starts kindergarten this year. I've started the paperwork. The special forms. The doctor's notes. I had to mark him as disabled for the first time in his life. He is. He qualifies. And yet, I've never thought of him that way. But I do see people stare when they see his button. I know most children have never seen a button. I know his preschooler teacher told his class, "he has a tricky tummy." I know he will stand out. I know attending primary activities will be difficult with all the church pizza and cookies. How will this go? He'll be the kid who has to go to the office every day after lunch to have a bolus feed. Can his little body with a compromised immune system handle the germs? How can I take care of him, if he is gone 8 hours every day? Will I have the knowledge to tell his doctors what they need? Do you see?

Do you see? I thought this time around with Charlie I would be ready. I thought, no biggie deal. Just another one to take to doctors and visits. Another prescription. No biggie deal. But it hurts. It hurts more than I expected. But I don't want pity. I want you to see. It's okay to ask how their health is. It's okay to be concerned. I like people who want to know how appointments go.

But when you ask if you can help, the answer is no. You've never dosed their medication. You've never seen me use their pump. You don't know their diet restrictions. You think it is easy to be gluten and dairy free, but things are sneaky and complicated. Like soy sauce, only few are gluten free. Eggs in restaurants are often mixed with milk. Did you know? Do you know malt is a gluten substance? I trust my mother-in-law, I trust my sister, I trust my sister-in-law. I've shown them. I've told them. I know they know. But you don't know. You've never seen.

If you want to help, I need friends. My kids need friends. I need people to know we are normal. Teach your children, my children are normal. The button is normal. Their diet is normal. They are still children. And your venting, your worries in life, your trials, your children; I want to hear about it. I'm not judging. You are also normal to me and I can be your friend.

**And if you read this far, congratulations, I hope this helps you understand what it is like to be the mother of a sick/different child**

Monday, November 25, 2013

Who Needs Parents???

My sister is my only close friend since we have moved. Our ward is very difficult to make friends in and I haven't had the energy since I've been so sick to work very hard at it. Heidi lives super close and it is just easy. We get out kids together so we can cook/bake/clean/gossip. We eat meals together when our husbands are working. Aiden thought for the longest time the baby in my belly was his cousin, Heidi's daughter, Baby Claire. We flow together well with how we parent and I back her and she backs me. We have similar tastes for decor and clothes and organization. Things that I have avoided, like organizing my pantry, are easy and fast when she is around. She has been a life saver so I haven't shriveled up and died from being lonely and bored.

As much as I love my sister, she is the only one that I talk to in my family. And you know what, I don't miss my parents. Obviously, I have no control over a relationship with my Dad since he died 18 months ago. However, right after Thanksgiving of last year, I told my mom I needed her to leave me and my family alone. I've seconded guessed that decision a lot in the last year, but I am so happy and I don't miss her. You know why?

I have Evan's family.

I have called my in-laws "mom" and "dad" for years. We drop by whenever we are missing them and many many dinners have been eaten at their house. They are patient with our loud, LOUDER,  LOUDEST, in your personal space, interrupting children.

Any time we are struggling or need support--we go see Mom and Dad. I always miss chatting with her when we haven't been over in at least a week. When we had no car the first few months we were married they would pick us up to go grocery shopping, go to the hospital, have dinner and do laundry at their house. We wouldn't have survived this summer without them being willing to come across town and stay at the apartment in the middle of the night so Evan could take me to the ER----6 or more times in 4 weeks.

And since I was the first one married in, I feel like I've been there for so much growth in the family. When Zoie was 12 and would tell me how much she liked a girlfriend of Evan's and wished they would date. Now she is 18, in college, and we proudly hang several pieces of her art on our walls. Avery graduated college and is close to graduating vet school. I saw Nolan go on his mission and come home to internet court Zaida...and now they have an almost 3 year old. I feel privileged to be the one who has/will hear the details of their first date with their spouse/how they met, followed every pregnancy, seen them all eventually graduate college and pursue life goals. It's been a first Thanksgiving Mom didn't ask me to bring anything and no one ate the pies I made. This year...Mom asked me to bring multiple dishes, although she probably still won't eat them :)

It's just nice to have a comfortable place to fit. I have more of a deep lasting relationship with Evan's family than I did with my own parents and brothers. I've seen the trailer park in Colorado that Mom and Dad met in, I've seen their house in Oklahoma. I know most of the stories when they reminisce, although I still don't track with Evan's grandparents stories involving second and third cousins of theirs. However, I'm okay with that.

I love my place in their family and I wouldn't change it for anything. I love Evan's parents and being in their family has made it so I do not miss my own parents. As I'm about to have my 6th Thanksgiving as part of this family, I'm happy. I'm happy to be there, I'm happy to be a part, I'm happy with my family. I look forward to this time of year with them.

Monday, October 28, 2013

Boo @ The Zoo

We went to Boo at the Zoo today. We had never been before and we probably won't go again. We got there for the 8am opening for Zoo Booster members. Even getting there early it was already quite crowded and we had to wait in a line that wrapped around the parking lot to get into the zoo. The whole trick-or-treating things was really waiting in lines throughout the whole zoo to be given candy at different corporate sponsored booths. We left after an hour, having been to the lines that were manageable and seeing the few animals that were out or in warmed buildings. By the time we left at 9, which is when it opened to general members and the public, the zoo was one long line from booth to booth. If you didn't stay in that line there was almost no way to get back in. 


We rode the carousel before we left and that was the only opportunity I had to get pictures. While I think the boys would have stayed longer, my body was beyond done and I paid for that excursion for the rest of the day. It was quite chilly. I thought I was fairly prepared and I just wasn't. I forgot how much longer it takes for the sun to come up over the mountains when you are in the shadow there, and there was enough breeze. Aiden was in a full body costume, with gloves and a hat and he was still cold. But they braved on. Aiden hates to ride an actual animal on the carousel so he is crying in these pictures--unfortunately, the benches had already been taken.

Wednesday, October 23, 2013