The First 9 Days (or BUTTERFLIES are FREE!!!)

Prior to the pump Erica was a beautiful caterpillar. Now she is a butterfly.
by Barb Chafe    See Barb and Erica's Diabetes web site

Erica & Rascal March 25, 1999 Get your coffee, put your feet up... I am the mom of a new pumper this could take a while.

A few years ago, I was asked to do a write-up for a another website dealing with children and diabetes. Why? I was parenting a beautiful child who had developed it shortly after her 4th birthday. At the time of my article, we had lived with diabetes for 3 yrs and although life felt like it was over when Erica was diagnosed, over time the emotional beating we had taken upon diagnosis had healed and we had integrated diabetes into our lifestyle. The purpose of my write-up then, was to give hope to the parents of newly diagnosed children. To let them know that once the shock wore off that although life would be changed, it would not be over. It was not a how to article, but rather This Was Our Story. Receiving letters from parents who read this article and responded with kind words expressing their thanks was very rewarding. They were relieved to know that they were not the only ones dealing with the anxiety, fears and frustration of the disease. Also, it gave them hope that things would get better in time. Children With Diabetes was a wonderful source of information and was the first link of our chain. Thanks to Brenda and Jeff Hitchcock.

What a difference from what I felt then, to what I feel now!! Erica, who is now 10 1/2, has been on an insulin infusion pump for 9 days. Her sugars are relatively stable, although we are still fine tuning things like basal rates and carbohydrate/bolus ratios. She is enjoying her newfound freedom like a sponge absorbs water A LOT OF WATER!. We feel like our family has just woken up after a long sleep. But how can I explain this feeling? It is hard to relate this to someone who has not experienced the joy of going from being shackled to being free. At times we felt very tied down when Erica was not on the pump. However, we worked things around her and still ran the roads. But it was always looming over us and the clock became as much a part of our life as juice packs, food, insulin and needles.

Two of the most rewarding things I have done in the past 9 days were:

Ecstasy! It is rather frightening though, as it seems too good to be true.

Finding out about the pump was a matter of luck, it wasn't something our local medical professionals discussed then. Over a year ago, as I was surfing the Internet I came across a site devoted to children on the pump. Link #2. The KidsRPumping website was key to making this monumental change in our lives, thank you again Ellen. I sat in front of the screen, reading the stories that were written by the children themselves, or the parents, and was shocked. How happy they sounded! There was joy in reading their stories and I cried with almost every one. After my husband read the stories, he pushed his chair back from the desk, looked at me, and said I want this for Erica. That started a 10-month fight for insurance coverage. What I went through during that time is an article in itself, but let's just say it was the most frustrating, anxiety producing, maddening battle of my life. How dare they deny my child the freedom that so many others were enjoying. I wanted her to have the freedom and great hbA1c's I was reading about.

During our 10-month battle, I was consuming every article I could find on the pump. I came across the Insulin Pumpers site, Link #3. These people, who are on the pump or have children on the pump, were fantastic. Thanks to Michael who makes it happen. Thanks too to those people who put up with repetitive questions and answered them like it was the first time. They sent emails to us encouraging us in our fight. Also during this time we linked up with a wonderful individual who eventually became our angel, Link#4. After many letters, intervention on our behalf by our angel, more letters, phone calls, meetings, more phone calls, we got the go ahead! A chat between Minimed(Thank you Link #5) and an empathetic member of my husband's management team (Thank you Link#6), was instrumental in determining the opportunity we were given. A cost free 5 month trial. If at the end of the trial the Endo says that the pump is beneficial to my daughter's emotional and physical well being, insurance will pay their part. I have no doubt that that will be achieved. I am not saying we will not encounter our share of trials and tribulations on the pump, it is not a magic pill and it requires vigilance and patience, but if even 75% of our trial period is as good as the first 9 days it will be very successful.

When we finally got our pump date, our angel flew down for a visit and let us play with her son's pump. Thank you angel, for everything!!! She gave my husband and I the confidence to insert infusion sets into each other. Great marriage test! She minimizes the impact she has made on our introduction to pumping but we felt so much more confident heading to the hospital early the morning of St. Patrick's Day with pump and supplies in hand. How could we lose? With all that support to hold us up we were doing it!! Our Minimed rep was kind enough to send us a copy of The Pump Girls CD and Erica's first insertion was done with their music pumping in the background. With her tummy numbed with EMLA and big tears silently dropping from her cheeks, we made the first insertion. It was tough! I was a little uncomfortable with having to put the introducer needle in, what I was not prepared for was how rubbery my daughter's skin was. ( In their true fashion, members of Insulin Pumpers have already sent us hints and tips that worked for them.)

After Erica was hooked up to her pump we were given a care by parent room, much like a small motel room, to relax in. We had the run of the hospital but had to check in periodically to confirm that everything was going okay. Erica looked like she had developed a bow in her back as she was afraid to straighten up, it might hurt! What if her top touched the tape, what if her hands were dirty, what if she pressed a button by mistake, what if it didn't work right, what if she got it wet, what if??? The questions went on and on and on and on and on! We were ready with the answers we had learned but she had to confirm things herself. Finally, later in the afternoon, I grabbed her, started dancing to the Pump Girls CD with her and bent her backwards over my knee. She was having so much fun she forgot for a little while that she was attached to something. We left there that day, were told to not bother coming back the next, and enjoy our Spring Break, with daily updates to the hospital of course and a pager number to call at ANY time. Whoopee!! We were free. But, now we were on our own. Something we had waited so long for, but it was a little frightening. What did we do? We let the Insulin Pumpers know of course, and contacted our angel who was on call to us, day and night. Phew'we knew we had someone who truly understood what we were going through and lots of experienced pumpers to lend a hand, plus a terrific medical team. The first week was a little nerve wracking. Erica's blood sugars were checked a gazillion times! As each day passed, however, we relaxed a bit more. Nine days later, I am doing the wincing as I see Erica wrestling with her sister, roughhousing with the neighbour's dog, jumping around, falling down and being FREE. No alarms yet, no loose sets, no crimped sites, although we had one cannula clog. Insulin use has had to be dropped considerably as she is SO BUSY! And happy, so very very happy. I can see how much of an impact those swinging blood sugars made in her day to day living now that they are virtually gone. Her gaiety and spontaneity (not easily achieved on injections) is contagious and affects everyone in the family.

Although there had been initial resistance to putting a child of Erica's age on the pump when I had first inquired a year ago, we felt no such thing the day we began. The medical professionals at our hospital, the IWK in Halifax, Nova Scotia, were wonderful and open with us (link #7). They, of course, have their concerns that we handle this properly. Their priority is Erica's well being. In the year that we awaited insurer's decisions, this hospital put a few kids on the pump. I think their positive experiences helped pave the way for Erica's relaxed startup. The diabetic nurse, who was an angel in her own right, encouraged us to send Erica to diabetic camp this summer. She has attended the past 3 years but we figured there would be nobody there with pump knowledge. Wrong, the diabetic nurse said she would be there, plus another young fellow who Erica knew from camp was also going and he had recently been put on a pump. What a difference a year makes!

As you may be able to tell, I am experiencing an exuberance of joy. I can't help it! Erica is wearing a beautiful silver necklace with tiny multicolored butterflies on it. My wonderful friend from next door gave it to her the day after she went on the pump. Its' significance?, prior to the pump Erica was a beautiful caterpillar. Now she is a butterfly. As you can see, we have had a number of vital links lead us to where we are now and we know many more links will be added to our chain. But this chain leads in a different direction, not a shackle anymore because as my dear friend said to Erica.

B U T T E R F L I E S   A R E   F R E E ! ! ! ! ! ! !

Update, December 9,1999.

My butterfly really sprouted her wings and flew last night. In case you don't know who my butterfly is, her name is Erica Chafe, she is 11, and she started pumping on March 17, 1999. She went from 'a caterpillar in a cocoon to a gorgeous butterfly', in the words of my dear friend who gave Erica a silver necklace decorated with multicolored butterflies the day after she began pumping.

Last night Erica not only flaunted her freedom from the rigors of diabetes, she SHONE!! Her Christmas concert was last night and it will be one I will never forget. She was one of a group of 6 actors who presented skits throughout the 2.5 hr concert. I was flabbergasted with her composure and steady voice as she spoke her parts into the microphone in front of a huge audience. With her hair done up by her older sister, a little makeup to emphasize those beautiful eyes, and a white sweater TUCKED into a pair of black pants (the band uniform), most people didn't know who she was!! The tubing was threaded through a hole in her pocket so the pump lay totally unseen. Although she always likes to just clip it to the top of her pants, last night she was 'front and center' and she didn't want a bulge at her waistline, NO PROBLEM! She didn't have to gulp down food whilst waiting in the wings for her next appearance! No more looking frantically at the watch wondering if she would remember her snack!! I never enjoyed a Christmas concert more. My young lady has come full circle from the child who entered the hospital 9 months ago to start pumping. Truly from a caterpillar to a butterfly. I never realized then how parallel that descriptive statement would be .

Socially her skills have gone through the roof. She doesn't feel so different anymore. She can stay with everyone else in the schoolyard, hang out with Mr MacDonald (a teacher who is a shining example of what teachers should be), drop over to a friends and stay there until she wants to come home (thank heavens she calls me, I would never know where she was!!), and on impulse, stay at a friends for supper!! I remember, pre-pump, when I would see a few sugars in 'the zone' in the run of a day. Now, they are the the rule, not the exeption. Boy, how far we have come!!

When I was looking at Erica last night, voice steady and clear, and a sparkle in her eyes, my eyes were shining. It was hard to hold back the tears, as my eyes weren't the only thing shimmering....a silver necklace of butterflies was around her neck. It had been awakened from its nest in the jewellery box where it had been lying safely for the past few months. This was her night, made possible by a little blue box safely tucked into her pants pocket. Her metamorphisis is butterfly is happy and free and A STAR!!

Barb Chafe, proud mom of Erica, a Canadian butterfly.

If you have a child with diabetes and would like to talk to other parents about the Insulin Pump, please contact or visit the Insulin-Pumpers website.