The Tale of our Story Blanket

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Story blanket / playscape / play mat hand made by Mama is Inspired. http://mamaisinspired.com/

 

A couple of years ago I came across my first story blanket while browsing pinterest. I instantly knew I wanted to knit my own. I also figured this would never happen. What a huge project to undertake!

But then last year, when my daughter was just shy of turning one year, I received the results from her CT scan and learned that she would in fact require serious surgery. During my routine prenatal ultrasound scan at 20 weeks of pregnancy my husband and I discovered that our daughter had a lesion on one of her lungs that measured 3 cm across: initially, after our ultrasound we felt elated by the news that our son would have a baby sister. We were running emotionally high. It was a particularly wonderful day. Then the phone rang. My husband answered in the other room but I could tell from his tone alone that there was something terribly wrong. I got on the phone with my midwife. She told me that the scan had found a lesion on our tiny daughter’s lung. The technician suggested a condition that was incompatible with life. My husband and I had already lost our first baby at the end of a healthy, full-term pregnancy. There was so much flying around my mind in this present moment. However, I stayed calm on the phone. I asked our midwife several questions. I asked for the size of the lesion. “3 cm across”, she answered. I wondered if she had meant 3 mm? She hadn’t. “How large can a 20 week old fetus’ lung be?”, I asked. “I don’t know”, she answered, followed by a pause and “I know.” My midwife and I were both aware that a 3 cm lesion had to be very serious. I got off the phone, I made another call. I scheduled a more comprehensive ultrasound for the following day.

 

Story blanket / playscape / play mat hand made by Mama is Inspired. http://mamaisinspired.com/

 

Story blanket / playscape / play mat hand made by Mama is Inspired. http://mamaisinspired.com/

 

After my son went to bed, I spent a long evening alternating between researching from my computer, crying my heart out, and attempting to calm my husband with my findings. By the end of the night I knew exactly what condition I wanted my daughter to have. I wanted her to have congenital cystic adenomatoid malformation (CCAM). And I knew what category of CCAM I wanted it to be. This could give our baby her best chance at life. It was a very long night. I experienced every fear possible.

 

Story blanket / playscape / play mat hand made by Mama is Inspired. http://mamaisinspired.com/

 

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Story blanket / playscape / play mat hand made by Mama is Inspired. http://mamaisinspired.com/

 

Then I woke up the following morning. A new day. I spoke to my baby girl and promised her I would be calm. That I would not worry. That I would love her immensely. That I would believe in her birth. That I would believe in her life outside of my body. I knew that if she was going to be strong, if she was going to make it, she needed me to be strong for her. She would require lots of loving attention. My husband and I went to our appointment with our new obstetrician and suddenly finding out that my baby had a congenital malformation became the best news of my life. She had just what I wanted her to have! It was a new kind of elation.

 

Story blanket / playscape / play mat hand made by Mama is Inspired. http://mamaisinspired.com/

 

Story blanket / playscape / play mat hand made by Mama is Inspired. http://mamaisinspired.com/

 

During her life inside of me we also met with the wonderful doctor who would ultimately become her surgeon. I held out for the hope that she would be in that 15% of children where the mass resolves itself on its own and disappears. She did well at birth. No respiratory problems! We took her home. We continued to see our specialist and my husband and I ignored what we later realized were her symptoms. Our doctor didn’t try to scare us with all the facts, just a few. I assume he would have if he didn’t believe we would go for the surgery that she did need. Her lesion did not go away. At 14 months of age the abnormal lung tissue had a diameter of 10 cm.

 

Story blanket / playscape / play mat hand made by Mama is Inspired. http://mamaisinspired.com/

 

Story blanket / playscape / play mat hand made by Mama is Inspired. http://mamaisinspired.com/

 

Story blanket / playscape / play mat hand made by Mama is Inspired. http://mamaisinspired.com/

 

What does any of this have to do with my story blanket? If you have read my earlier posts, you will know that knitting is tremendously grounding for me. Somewhere inside of me I knew that I needed to knit. I also needed a project that was easy. I needed to be inspired by a project that could become dear to my children. I was so afraid of the general anaesthesia. I was scared of death. I knew it wasn’t likely, but still I knew death could happen. It has happened before. I also knew that letting these thoughts run away with me would not serve anyone, most especially not my children. So several days before the scheduled surgery I knit my first square. And then another. While our daughter was in surgery – we left her, sedated, at 8:30am and at 2:30pm we received the news that the surgery was successful and that she would be going up to the PICU where we could go to her – I knit. My husband read and we talked. We drank coffee. I knitted square after square. We stayed calm. But every time there would be news of a call from the OR I would become terrified. Fortunately, the news always quelled our nerves. And I kept on knitting.

 

Story blanket / playscape / play mat hand made by Mama is Inspired. http://mamaisinspired.com/

 

Our daughter had her surgery a year ago today. She is no longer a “great sleeper”. She doesn’t cough through her meals. She doesn’t frighten me by seeming to stop breathing followed by gasps for air several times a night. She loves to nurse – she doesn’t choke. She has gone up 60 percentile points for her height. She is now thriving. We didn’t realize she wasn’t. We thought that all those other things were just who she was. Rationalizing everything was our way of living without fear. A way to stay present with our baby girl. We thought the coughs were an attention-getting charm. We thought we were blessed by an amazing sleeper. (She stopped napping before she even turned two!) I thought that I must have an over-active let-down while nursing (she actually taught herself very early on how to nurse without stimulating a let-down.Amazing!) All of this would have been just who she was for much longer than 14 months if I hadn’t have gone in for that routine ultrasound. I wonder about how much suffering through years of oxygen deprivation would have effected her? We are told that eventually she would have had the surgery anyways as in the end there is always an infection that results in emergency open-chest surgery. The gratitude we feel for all of our caregivers who together helped us avoid this fate, is absolutely immense.

 

Story blanket / playscape hand made by Mama is Inspired. http://mamaisinspired.com/

 

Story blanket / playscape / play mat hand made by Mama is Inspired. http://mamaisinspired.com/

 

A month after the surgery we left for our summer spent again in Vancouver, Canada. I expected to get much more done on the blanket while we were there…during long nap times! I am happy to say that that these extended nap times never manifested. This play mat took much longer than anticipated but it was a joyful project and I am thrilled by how much both of my children seem to love and even treasure this story blanket.

 

Story blanket / playscape / play mat hand made by Mama is Inspired. http://mamaisinspired.com/

 

Story blanket / playscape hand made by Mama is Inspired. http://mamaisinspired.com/

 

story blanket playmat by mama is inspired

PS this is a wonderful book for finding stories to tell on the story blanket!

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