Every child is different, and this means that every individual journey that parents will go on is different too. At the same time, having a child changes your perspectives - and having a child with a limb difference (or indeed, some other form of disability, physical impairment or difference) can change them even more. Jen Lee Reeves, mother of Jordan Reeves and founder of Born Just Right is simply an incredible woman and such an inspiration, she has unique first-hand experience when it comes to talking about limb difference from the point of view of a parent, which she shares with us below:
Without further ado, over to Jen...
"Congrats on your new arrival. It’s okay to be sad. We tend to have a vision that the “perfect” baby has ten fingers and ten toes. I have wonderful news. Ten fingers aren’t that big of a deal. Yes, you’ll probably stare at babies with two hands for a while. I know I did. But please, know that you are not alone. I am so proud to be a resource for you. 10 fingers and 10 toes aren't everything, a healthy baby is what's most important.
It’s okay to ask a TON of questions. When Jordan was born, I had a small group of parents I found who were incredible listeners. Feel free to ask questions to other parents."
As Jen affirms, talking about limb difference is important, and it’s also worth reaching out and finding hospital staff, occupational and physical therapists, and any other support you think you might need now. It is never too early to find resources who can help make sure your child is strong, and able to remain strong and healthy throughout their whole life.
However at the same time, make sure that talking about limb difference and preparing for possible eventualities isn't all that you're doing. Take time and just absorb and enjoy this ‘tiny baby’ period too. It’s precious. It’s quick. It’s exhausting. They'll be a young adult before you know it. Also, don't forget about self-care (for you and your little one). No matter how many exercises or appointments may fall into your lap from doctors and therapists, sometimes taking a nap and making sure that you're well rested is more important.
Talking about limb difference: 5 key truths:
Here are 5 tips that Jen wishes she'd been told when her daughter was born and still sticks with today:
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1. It’s okay to be sad.
We all have an image of what our child will be like when he or she is born. We’re allowed to be sad.
2. Don’t let the sad run your life.
Take the time to enjoy your sweet baby. The cuddly phase goes so fast. It’s the best… even if you’re sleep deprived.
3. Stop reading books and websites that tell you when standard developmental milestones take place.
our baby might hit those milestones differently. Also, he or she might come up with a way to meet those milestones differently.
4. Reach out to the limb different community.
It’s getting easier and easier to communicate with people online but the most powerful experiences are meeting other limb different kids and their families. Our first meeting was when Jordan was 32 weeks old. We haven’t stopped meeting with families since!
In the UK, the charity Reach have a large network of people with limb loss and their families. They organise local and national meet ups and can be found online through their website www.reach.org.uk
5. Answer questions honestly and in a positive way.
The way you respond to questions in public teaches your child how to go about talking about limb difference. It also shows them how to respond when he or she grows up and they have to answer such questions without you - like when they're at school or when the questions come from members of their social circle like friends or a teacher.
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We hope that the information offered through this blog has helped you as a new parent of a child with an upper limb (or lower limb) difference, that it helps to start talking about limb difference, and sets your mind at ease in what can be quite an overwhelming time. Don't forget that the ExpHand blog is also a great source of practical advice and inspirational stories from across the limb difference community, and that if you have a specific question that you can't find an answer for, you can put it to our team directly via our contact us page too.