When Her Pancreas Was Broken From The Start

Me and Baby Maelee 10 years ago.

Can I just say my hair has never been

this long since this picture? #goals

 As I sat in the CF clinic exam room 10 years ago and our dietician was explaining to me the details of my baby not having a functioning pancreas I learned that she could, would, and does experience frequent and often constant stomach pain and cramping. I remember feeling relieved that I had justification for holding her even more. I hated to think that my tiny innocent baby could be hurting and not be able to tell me. As she has gotten older it is even more difficult to hear her say her stomach hurts and watch her suffer and know all the meds she is already taking and that it isn’t enough to end the pain. Watching my kids struggle with severe pancreatic insufficiency and their CF in general, has helped me to remember that what you see on the outside of a person is not at all reflective of the struggle and pain they are experiencing on the inside.  

Watching through mother eyes as my oldest has experienced rough and constant stream of dealing with her stomach issues since birth I was recently touched when I thought of her in relation to “a certain woman” referenced in the New Testament who had the issue of blood for over 12 years (Mark 5, etc). The woman “had suffered many things of many physicians, and had spent all that she had, and was nothing bettered, but rather grew worse” – Mark 5:26). “And, behold, a woman, which was diseased with an issue of blood twelve years, came behind him, and touched the hem of his garment: For she said within herself, If I may but touch his garment, I shall be whole” (Matthew 9: 20-21). I want her to have faith as this woman did to know that through Jesus she can and will be healed. I want her to fight through the throng of people to get her arm stretched out enough to touch the hem of Jesus’ garment. I know she can be that woman and is becoming that woman now.

I also know that not all healing comes on earth. So I need to help her to wait. That is one of my jobs as a mother. Help her to wait with faith and hope. That one day lung function and pancreatic insufficiency won’t be a problem for her and to be happy and enjoy life while she waits for that day.

Her glamorous ring.

Being the annoying song lady.

I'm not always perfect at compassion and motivating because there are days when I've run out of gas myself it seems. However, it is the little things that the Holy Ghost helps me to know will help. Things that are tiny in thought but powerful in purpose. Things like, finding a flower ring on clearance in the hospital gift shop and walking it up to her to find her awake from her post op nap vomiting blood. I wasn’t planning on getting anything but found the ring and was so happy to be able to give it to her during that difficult recovery. She was thrilled to wear the ring on her IV hand so it would still feel like a beautiful hand. Or when earlier this month when we were going to a follow up appointment that she was extremely nervous for I made her a hat the night before so she would have a little something new and special to wear to the appointment. She is my daughter after all so I knew a little “accessory courage”, one of my favorite kinds of courage to lighten the morning would go a long way (don’t worry I know courage comes from your heart but a fun hat or a pair of earrings can go a long way too in my warped opinion). You never know when you make someone something if they will really like it or not but it was just the thing to help her be positive through the appointment. Or a month before her hospitalization she was getting sick and we had months ahead signed up for a family 5K. She was really dragging and struggling throughout the race. A goofy song I had heard on the radio came to mind and we sang it together to get through the race. Something always comes to mind when the anxiousness of the moment presses on my own mind as I watch her.

Accessory courage at its best on CF clinic day.

When I was searching for some words I needed to hear this week I found something even better. It was this talk by Boyd K. Packer. He explains that we all (especially family members of people struggling mentally and physically) need to “become like angels who “move the water,” healing a spirit by erasing loneliness, embarrassment, or rejection…..If our view is limited to mortal life, some things become unbearable because they seem so unfair and so permanent. There are doctrines which, if understood, will bring a perspective toward and a composure regarding problems which otherwise have no satisfactory explanation…….That day of healing will come. Bodies which are deformed and minds that are warped will be made perfect. In the meantime, we must look after those who wait.”

I feel and see the love of Heavenly Father in my life as I live my life as a mother to all my children.

Comforting My Babies (Wrapped In Love)

I’m so grateful that I come from a family of sewers. Sewing has brought to me immeasurable amounts of joy, therapy, and much needed self-expression since I was a tiny kid threading needles back through my mom’s quilts stretched on quilt frames. Because I love sewing “sew” {so} much I try all sorts of projects but the most satisfying by far is making quilts for my kids. I say “quilts” in the lightest of terms. Don’t picture some elaborate pieced out masterpiece, instead picture something sturdy with color done in large blocks. I love that every bed in my house is covered in a quilt that I made myself. I love that to prepare for big occasions such as a baby being born, or milestone ages reached that I have made a quilt for my kids for that. It’s a journal of sorts. Something that is so special to me that I hope translates into that fabric and batting and binding and when they lay down to sleep or be comforted or warmed that they know their mama’s hands have been there to help make that happen.

Most recently I finished Charles turning 8 quilt because my accidental but then firmly abided by tradition has been to make a baby blanket, then a blanket when my kid turns 3 years old, then a blanket when they turn 8. I suppose I’ll carry it through to ages 12, 16, and then when they live on their own perhaps - - - we’ll see but for now we have those first three quilt ages established.

When I look at the quilts I remember what I thought about when I made them. I remember what was going on in our family and I love that seeing the fabric is what makes the memories come to me.

So far the two eight year old quilts that I have made have been special because turning 8 in our family means that you’re making the decision to follow Jesus Christ and get baptized and receive the gift of the Holy Ghost. The 8 year old quilts are made from clothes that my kids wore throughout the years leading up to their 8^th birthday. I want them to remember what they wore as they first learned about making choices and fixing mistakes and learned of their Savior Jesus Christ.

As I was just last month making Charles 8 year old quilt I thought about 5 years ago when I was making him his three year old quilt. I remember being so worried that I would not finish the quilt on time for Charles 3^rd birthday because Orson was so sick and I was not able to work on it as much as I wanted. The quilt meant a lot to Charles and he reminded me often of how excited he was to get it from me on his birthday.

When I realized that I definitely would not make my deadline because Orson had ended up being admitted to the hospital I remember being a wreck and tearfully asking my Mom if she would finish it for me because I knew how disappointed Charles would be if he didn’t get it as he was hoping. So that particular quilt is especially special because it has the hands of Charles grandmother and his mother in it. It was given to Charles on the morning of his 3^rd birthday in a house decorated by Dad and without his baby brother or Mom there to sing a birthday song. But thanks to my Mom, he DID get it and the legacy of fabric and thread continues over another generation of woman in my family.

I love the analogy of a quilt being like the Holy Ghost (AKA the Comforter, especially applicable in this case). “He is the Comforter (John 14:26). As the soothing voice of a loving parent can quiet a crying child, the whisperings of the Spirit can calm our fears, hush the nagging worries of our life, and comfort us when we grieve. The Holy Ghost can fill us "with hope and perfect love" and "teach [us] the peaceable things of the kingdom" (Moroni 8:26; D&C 36:2).” (link to quote and more info here).

To get to my point, I cannot sing. I cannot dance. But darn it I can sew a quilt under pressure.

I searched high and low amongst my 11,000 jpegs

but couldn't find the quilt pictures I wanted. This

one is adorable though so I'll post it. Picture

a really sweet picture of all three kids wrapped in their

3 year old quilts on Orson's 3rd birthday. Its adorable.

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My Fabric Journal. 

Maelee’s baby blanket (2007): Done in Mary Engelbreit (another obsession of mine) flower style. She being my first baby and my coming off working a full time job we had a little money to buy furniture and fix up her room which was all done from the colors in her quilt.

Charles baby blanket (2009): Lots of fish hand appliqued covered Charles baby blanket. It matched the theme I enforced for our 2^nd CF Great Strides Walk. We couldn’t afford to have more shirts made for our walk team so I made fish for us all to pin on our shirts from the year before. They matched Charles quilt.

Maelee’s 3 year old quilt (2010): My older sister who lived close by would pick Maelee up and take her to preschool for me so that I could finish Maelee’s three year old quilt. It was such a kind service that she did for me, simple and kind and needed. I was getting big with child as they say with baby Orson at the time and had a two year old and I remember how difficult it was to spread out my squares on the floor and get up and down like I needed to. I got that one done because of her.

Orson’s baby blanket (2011): Orson’s birth hit me like a fleet of semi trucks so it took a while to get his quilt done. My Mom actually picked the adorable cowboy fabric and the green satin on the back was the same fabric I had used to make the wedding neck ties for my brothers wedding. His quilt didn’t get done until at least 6 months after he was born, but it did make it to the hospital with him when he was admitted at 7 months for his first CF exacerbation.

Charles 3 year old quilt (2012): We were so devastated to be in the hospital with Orson on Charles birthday. We try to be very sensitive to him not getting the short end of the stick due to being the only one with CF and this felt like breaking that rule majorly. But as I said, my Mom rescued me and got it finished on time.

Orson’s 3 year old quilt (2014): This one looks as much like Charles as I could make it despite a different color scheme because those boys were and are inspirable. They have become such special friends to each other and I loved to be able to carry on that continuity. For my own selfish reasons I’ve always hoped that orange would be Orson’s favorite color so that is what I made his quilt with. You know, “O”range for “O”rson I thought would be cool.

Ruby’s baby blanket (2015): she had so many truly beautiful real deal quilts given to her that I felt my large blocked colorful sturdy ones would be inadequate in comparison, but I made her one just the same. It is from one of my favorite items at IKEA, the precut fabric block bundles they sell tucked away in a little corner of their textile section. The prints are all totally whacked and don’t match at all which is absolutely how I felt when she was born and I was sewing it, but it turned out beautiful despite my crazy fabric choices, perhaps even because of them.

Maelee’s 8 year old quilt (2015): This project was due 7 days after my 4^th child was born and I was definitely late turning it in. Maelee was old enough that I could talk her off the cliff of “mom doesn’t love me because my quilt isn’t done on my birthday” routine, but it was touch and go for a while. All of that summer was a big hot mess, but the quilt was finished before school started in August made with the dresses Maelee had worn all of her growing up to 8 years.

Charles 8 year old quilt (2017): This was a really fun sew. I was feeling happy that summer was near and that baseball and play season was almost over. I enjoyed making the blocks out of Charles t-shirts and remembering how I got most of them on various black Friday clothing hunts into the wee hours of the morning with my black Friday shopping posse.