A guest post by my wife.
There were so many people who turned up to say goodbye to Natalie. And we know that there were many more of you who wanted to come.
So for everyone who came, who wanted to come but couldn’t and for everyone that spared a thought for us; Thank You.
Below is what Michael said on behalf of Mommy and Daddy.
This is a time where we would normally reflect on what Natalie has achieved during her life; graduating from University; doing charitable work; becoming an astronaut; wrestling with wild bears (and winning probably) or some other wonderful accomplishment. Sadly, she only lived for 5 months and 9 days so we can only speculate as to what she would have accomplished had circumstances been different. Despite keeping us on our toes for only 5 months and 9 days I suspect Natalie has tackled an above average number of challenges in that time compared to most of the people in front of me now. In the 162 days that Natalie lived she has:
- Received 16 blood transfusions
- Completed in excess of 15 courses of antibiotics
- Developed an opiate addiction and successfully made it through withdrawal
- Survived heart surgery
- Travelled 134 miles (128 of which were by ambulance)
- Pulled her own ventilator tube out (more than once)
- Removed several IV cannulas
- Demonstrated “roid rage”
- And more besides
Whilst these may sound trivial or shocking to some, this was a girl that was born 17 weeks early weighing 1lb 5oz and whom didn’t open her eyes until she was 12 days old. I’m aware that some of you may never have actually met Natalie, but I’m sure every one of the people that did, even if for only the shortest time, will have a story to tell about her. Stories covering everything from opening her eyes, her ability to poo, her subsequent dismay at having a dirty nappy, her cravings for milk, her dislike of being touched at first, how she grew to enjoy having a bath and being held.
Sam and I also have a few stories of our own and we have generally kept these to ourselves or written them in the diaries that each of the girls was given when they were born. I suspect we may never share all of what was written in those diaries, however the following is an entry from Monday 3rd October when we were told for the first time that Natalie was unlikely to make it through the night. She would have been 2 months and 6 days old.
This has been the hardest 48 hours of my life and I don’t think it is about to get any easier. Natalie, my gorgeous girl, you are such a fighter! So it turns out your little lungs are more damaged than we thought, so you won’t be well enough to have the doctors fix your heart. Even if they did fix your heart, I’m not sure it would help.
Mommy and Daddy were told just how poorly you are after you had a bad day. Today you’ve had lots of visitors come to say goodbye. But you had an extra special visitor to come say hello; it was Alexus! Mommy and Daddy were so pleased to see you both together for the first time that is made us cry. Although the doctors had given you something to make you sleep, Alexus was still trying to hug you and steal your jazzy hat.
This may be it baby girl, and only you can decide that, but I want you to know that Mommy and Daddy are so proud of you! You’ve given us 10 amazing, emotional and tough weeks and if this is all you can manage, that’s fine. You’ve tried so hard and we cannot ask any more from you. I love you with all my heart and I’m grateful for every heart wrenching second we got to have with you.
If this is it, please know that you will never be forgotten (ever!) and that one of the greatest and proudest achievements in our lives is being your Mommy and Daddy.
But Natalie wasn’t ready to give up and she made it through the heart surgery and a few more blood transfusions to fight on for another 3 months. 3 Months that allowed more new people to meet her and care for her. While Natalie may not have accomplished things in the traditional sense, it is very clear to see that she has impacted a lot of people’s lives by the number of people that are here today.
We know that there is nothing that can be done or said to give us the time with Natalie that we all should have been able to have, but we are so thankful for the time that we had with Natalie and we won’t forget it. How could we? Natalie demonstrated her personality right from the start, and whilst she couldn’t scream or cry, she knew how to get attention:
- She would continually kick the sheets off her and rest a leg on the side of the boundary that was there to support her.
- She would breathe against the ventilator causing it to make weird noises.
- She would splint her chest to raise the “no breathing” alarm like it was game in order to be fed on the hour, every hour.
- She would “hulk out” when she really wasn’t happy about something (mostly car and ambulance journeys) even when she was supposedly paralysed.
- She would insist on removing cannulas and feeding and breathing tubes, just because.
Natalie picked up a few nick names during her stay on the neo-natal units. But the one that we feel most aptly captures her is the Hulk. For someone so tiny, she had such a strong will to live and surprisingly impressive strength. You wouldn’t like her when she was angry and fought so hard that a Consultant at the Children’s hospital described her as “hard-core”.
You may have noticed that I keep mentioning the 9 days she lived for after reaching 5 months. I wasn’t sure why those 9 days were so important to me at first. They are arguably inconsequential in the grand scheme of things. I realise now, however, that those 9 days are so important to me because for the last 7 days we lived as a family of four, doing the things that families do. We painted, we bathed the girls together, went for a walk, we were kept up by the two of them and juggled feeding arrangements so that we could all eat. We even managed a family cuddle on the sofa. Those 7 days will always be invaluable to Sam and I and Alexus as she grows up and learns that she is a twin. What we were able to do in those 7 days wouldn’t have been possible without the support Acorns has provided us.
To show our thanks and to help Acorns to continue to provide care for children and families, we have created a Daisy Chain Fund in Natalie’s name that will grow for as long as Natalie should of herself. The first contribution of over £1,500 to Natalie’s fund has been raised by her Aunty Dani who has bravely volunteered to have her head shaved by Sam. In case you don’t know who Dani is, all I will say is long, red dreads.
Sadly, it is now time to say goodbye to Natalie.
You will always be our tiny girl, our princess, our daughter and nothing can change that. We will always be your Mommy and Daddy and nothing can change that.
Natalie Alyssa Cunningham,
We love you;
We admire you;
We thank you;
We will miss you;
We will never forget you.
You will always be in our hearts and thoughts as you fly among the stars.
All our love, Mommy and Daddy.
The First 6 Weeks 