Monday, June 24, 2013

Another Lesson From the Cart: What Not To Say

After loading all of our things on to a cart and heading down the elevator of the children's hospital I couldn't wait to get Brinkley in the car to go home from our latest stay at GHS.  (We have now hit the 23 week mark.)  The young man from the transport team waited on the sidewalk with our cart as I pushed Brinkley, in his  stroller, toward the parking deck elevator.  While waiting on the elevator a lady (probably in her 50's) joined us and started talking to us.  She told me that she has an infant niece that is a special needs child.  The little girl has some sort of problem with the formation of her brain.  

The lady went on to tell me that the Lord could and would heal her from this problem.  She gave me the impression that she wanted to know what was wrong with Brinkley since the nasal cannula and oxygen tank aren't normal accessories for an infant.   It seemed as though she was afraid to ask, so I thought I would help her out.  "He has Down Syndrome."  Her response, "The Good Lord can heal that too."  I wasn't quite sure how to respond so I politely smiled and kept pushing B toward our car.  

I understand that the lady meant well and probably firmly believed what she said to me, but it struck me rather oddly.  Much like the many responses of "I'm sorry" that we have gotten over the last year, this was not something that I wanted to hear.  So many people have no idea what to say to someone when they find out that their child has special needs.  I know I didn't before I got the unexpected invitation to join this elite club.  I will be the first one to tell you that it is hard to grasp the fact that this precious child you are expecting (or have given birth to) is going to have a life long disability.  

In those brief seconds following the well meaning lady's comment two things ran through my mind.  One was that she apparently has no understanding of Down Syndrome.  Though I have a strong faith and believe that my God can do anything, I also know that Down's is not an injury or an illness.  It is not something that can be corrected.  It is a part of the genetic makeup.  I firmly believe in miracles, but I don't think that God is going to miraculously change my child's genetic makeup.  My second thought was, I don't want him changed.  He is just as God intended him to be and he wouldn't be Brinkley otherwise.

Parents of special needs kids don't want to hear "I'm sorry".  Trust me, we've spent plenty of time feeling sorry for ourselves.  After we get through our mourning period, we want to move on and love our kids and give them the best that we can.  We don't want to hear, "Special people are chosen for special kids."  If being special means having the craziness that our family has been through over the last year, then I don't want to be special.  I want my family to be normal.  I want my five year old to have Mommy and Daddy at home and not think that Mommy lives at the hospital or that I love Brinkley more because of all the time I have to devote to his care.  I don't want my infant to have spent 23 of his 38 weeks of life in a hospital room.  

Special needs are not something that anyone wishes for, but when we as special needs parents come to terms with the shift our lives have taken, we are free to see the beauty in our kids and embrace the journey.  As rough as it may be, it is filled with beauty and I wouldn't trade the opportunities that I have had for anything.  I love this little guy in a way that I could never explain and his smile and determination inspire me everyday to keep pushing through.  

Last June, after receiving our official diagnosis, I got a call from a support parent that the genetic counselor connected us to.  Her first words to me, "Congratulations!"  I was caught just as off guard as by the lady at the elevator.  It took a while for it to sink in, but now that precious lady has become a dear friend and I can't thank her enough.  As the parent of a preteen with Downs, she knew much about the journey that we were embarking on.  She is an invaluable resource!  

With that in mind, I want to encourage you of what TO say when you meet one of us.  As I learned from my sweet friend, "Congratulations" as awkward as it seems at the moment is an incredible reminder to the parent.  Our children are a blessing just like children that don't have special needs.  We are just as proud of them as we would be of a typical child.  They deserve all the hoopla and love that any other child would receive.  Another friend's response to my husband, "That's awesome!"  Though we didn't know it at the moment, it really is!

If you want to be incredibly helpful to the family pray for wisdom for them as they will need to build a support network.  Pray for them to build the right care team and connect with other families.  Some friends of ours came to us within a few days of our announcement and told us that the husband has a preschool aged cousin with Down's.  They had talked with their family and wanted to introduce us to each other if we were comfortable with that.  This was so helpful!  The little girl not only has Downs, but also has a heart defect that was treated by the same team that would be caring for Brinkley.  No one wants to (or has time to) reinvent the wheel when dealing with a special needs child, so connections with those that have been there and done that are wonderful!

So, offer your congratulations and offer your help.  Offer to help the family connect with others you know.  Offer to babysit their other children during the MANY doctor appointments.  Offer to bring dinner or cut their grass, anything that will give them time to spend with their family and just feel normal.  Tell them about an awesome person you know that may share their special need.  We always need encouragement!  Ask if there are other ways that you can support them.  Every family is different, so just ask.  They may not be at a place yet where they know exactly what they need, but knowing you are willing makes a huge difference.  

Take it from this mom, every little bit helps!   

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