A Different Kind of Gift
The Christmas holiday is the perfect opportunity to express your love for your friends, family and the birth of our Savior. It has been said it is a time of giving. An opportunity to share with others and even make amends. This Christmas was no different. It consisted of the usual wrapping of presents, tasting sweet treats, building gingerbread houses with the kids, and enjoying all the wonderful smiles of joy on each others faces.
This year, December 24th – I was reminded of another gift. The gift of humility, love and understanding. The chance to be reminded that there are many times in life that we don’t always receive what we had hoped – but, we are still blessed with what we are given.
I received an e-mail that morning from a family who’s child was diagnosed with Russell-Silver Syndrome. Although the child’s mother had valuable insight into her daughters differences and had made great strides at researching her daughter’s symptoms via the internet prior to diagnosis- it was still a bit of a shock to receive the final results – especially at Christmas.
When I called “her” mother to see if I could offer her support and guidance as to her next steps, I was very happy to hear that she was already making the necessary list of questions for her physicians and eager to find out what the next steps were for treatment options. We discussed going through the feelings of grief – knowing that you have a “name” for which to base treatment for your child; yet, knowing that your child is different. The normal reaction of the diagnosis for her and many others usually consist of wishing that maybe the scary road ahead was just a fluke and by some chance it would be but a dream drifting away like smoke in the wind. But, for her – her dream was not of a child with symmetrical arms and legs or a ravenous appetite. Her child would forever be labeled as a child with a syndrome where countless growth charts, endo appointments and gastroenterology concerns would lurk throughout her life.
And then, we discussed how fortunate we are to be able to experience a less than perfect world. A place where we belong – in that we have a special family and connection of individuals that can relate only to us and our circumstances. We have the chance at an extra gift of seeing that God makes perfect children – even if they look different or require a little extra love and care. And we discussed how special she is to be blessed to have a child and “her” a mother – where the unconditional love will carry them through the struggles they may or may not face.
This phone call was a reminder to me for all individuals facing and/or receiving diagnoses of a rare disease….that there are gifts in wrapped packages and there are gifts we can not see….
Gifts of hope, love and support. Precious gifts that should be upheld and celebrated – not feared. A time to learn and understand what love and humility and life is all about.
Wishing everyone a Happy New Year.