Membership has its privileges :-)

I have just heard from a dear friend and his 3 month pregnant wife, that their baby has Down’s Syndrome. While their first feelings of sadness and disappointment, they are getting used to the news and are “ok” right now. This means that our club will have a new member in August and I have conflicting thoughts about what to say during my visit with them next week.  What can I possibly say to these wonderful friends to give them a look into our life and possibly their future?  They, along with their 2 1/2 year old son are about to embark on a most difficult but rewarding journey.

• Do I tell them that when their child is born, he might need to to be in the hospital to identify or treat medical issues that require tubes, machines and various numbers that you will learn to monitor? 
• Or that the doctors and nurses at the hospital will answer every single tedious question that they ask with a sensitivity that will give them the strength to make it through those tough first weeks?

 

• Do I share my experience of the enormous mommy’s guilt that tears at your heart, when you have to care for your special needs child and your other children just want to play with playdoh or finish a puzzle?
• Or do I tell them that this wonderful child will teach lessons to his siblings about patience, acceptance and unconditional love?  And that watching your delicate little one smile and admire those siblings will fill your heart in a way you never thought imaginable.

 

• Do I tell my friends to love each other more than ever because their marriage will be tested in a way that cuts to the core.  That men’s and women’s emotions are so different in times of uncertainty, sadness and fear, and that listening becomes the most intimate thing you can give each other.
• Or do I say that when you are in the hospital with your very ill child and your spouse cares for your other children, does the laundry, cleans the house, juggles your job and theirs, and brings you your favorite pajamas that you will need and love him more than you ever have before.

 

• Do I tell this mommy that instead of filling their time with music groups, gymboree and swimming classes, many of her days with her new child will be spent with therapists, doctors and specialists?
• Or do I encourage her to be an strong advocate for this little life who will need the best people on their team no matter what the costs.  That she will know when her child needs help, she will fight to get the attention that child needs and that “no” is not an acceptable answer.

 

• Do I tell her that while she may not have as much time or energy to be with friends and family and that babysitters are very difficult to find?
• Or do I remind her that she MUST ask for and accept help from those around her.  That girlfriends will babysit and that family will be there to hold her up when her energy is low and she needs to find the strength to get through one more obstacle.

 

• Should I mention that while her child might not speak when he is one or even 2 he will communicate through smiles, bright eyes and loving kisses and that will be all she needs to know that he is ok. 

 

• Can I tell them that carrying a two or three year old does crazy things to your arms and back and that your own health takes a back seat?
• Or should I say that they will beam with pride when their child finds their own unique way to get around in the world and to get the toy they are after.  That waiting for those first steps after years of therapy will be the sweetest victory that you never thought was possible in those early days.

 

• Should I mention that I still get sad over the loss of a dream for my child and that I cry when I’m alone just thinking about where we thought we would be in our life, where we are and how far we’ve come?
• Or should I say that I have never felt happier in my life than when my little brave child pulls my face in really close to give me a sweet kiss on the face or when he makes the sign that I taught him for “mommy” and laughs out loud.

 

Maybe, I should just tell them that we welcome them into this new club, that we are here to support all new members, that they are not alone and that membership does have its privileges.
 
 
http://www.cdss.ca/
https://twitter.com/CdnDownSyndrome