It’s funny how typically you have a baby and your family increases by one (more if you have multiples).  If you look way into the future that one child may take a husband or wife increasing your family again, then maybe a grandchild or two will come into the picture.  Usually our families increase in size slowly over time.

 

However, I have come to find that having a child with special needs means your family increases, very suddenly, by hundreds (maybe thousands?).  I can’t say every parent feels this way.  I don’t know. I’m still new to it all.

 

What I do know is that before my daughter was even born, I was looking at blogs and forums and websites to find all the information I could.  I read stories about children who are like Lily, about mothers who have faced the decisions I’ve faced. There were moments I cried in pain for some of these families, and moments I wept with joy for them.  But I still didn’t know what I know now.

 

Three months after Lily was born, I joined Mom’s Making a Difference, which is a group of moms who have children with special needs. We get together every other Saturday morning, popping in for ten minutes to two hours, depending on what time we have to give.  We spend those moments discussing our children and our lives.  We spend that time admitting our weaknesses to one another and bragging about our strengths when we’ve found them.  We spend that time building each other up, sharing knowledge and advice or just an ear to listen.  I cry for these women, for their sons and daughters.  I laugh with them and find joy with them.  I pray for them.

 

There is an unspoken understanding among this group. It didn’t take me too long to realize that the thread that joined us is the same thread that alienates us from others.  I suddenly understood that even though there are really difficult moments where I feel utterly alone because most people can’t possibly understand… that I’m not actually alone. There are people who understand enough that they can cry for me, find joy with me, and pray for me in a way that nobody else can.  I concluded that these women are my family. And so with Lily there came a dozen women and a few of their husbands and plenty of children.

 

Then I started spending more time online to research and prepare myself for all of Lily’s appointments.  I wanted to know what to expect so that I could face each appointment with knowledge under my belt, ready to make any decisions I needed to make.  I reread those stories I had read when I was pregnant.  I reread the blogs and the forums.  I joined three or four different Facebook groups.  I wrote a post on one of the websites.  I saw people in these Facebook groups write questions to be met with dozens of answers, insights, and stories of personal experiences.  All the while I have found myself touched by these families, feeling connected to them.

 

Yesterday a woman posted in one of the groups about her baby girl with WHS.  She announced the death sentence the doctor’s had given her daughter, kidney failure.  I immediately wept. I have a soft heart anyway, but this was more than that.  It felt personal. Over the next twenty-four hours after leaving her a small message and as I waited for updates, she received well over a hundred comments, all from WHS families.  As the doctor gave this mother a difficult decision, she was met with love, acceptance, and an insurmountable amount of understanding.  Every person who commented, including myself, did so as her family.  And I realized that along with Lily came a few hundred more family members.

 

So in lieu of Thanksgiving I am writing this post because I have something that few others have to be thankful for.  I have a huge family.  I have people who understand.  I have people to cry for and people who will cry for me and for Lily.  I have a place to get answers to my questions, and a place where I can answer the questions for others. I have a place where I can celebrate the triumphs of children who work hard for every small victory, and a place where others will celebrate the victories of my child.  I am thankful because I’m not alone, and because these families (now MY family) are not alone either.

 

Thank you all so much for being part of this awesome family.

 

*Note: I am also VERY thankful for the family and friends I had before Lily was born.  You are all amazing.  I hope you know this post doesn’t discount you.  I love you and I don’t know what I would do without you.

Lily

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One Response to Thankful

  1. Anitra says:

    What a fitting Thanksgiving message. Thanks so much for sharing it. The holidays are such a great time to reflect on life’s gifts, and community has to be among the top blessings for a parent with a child with special needs. I’m so glad that through various avenues you’ve taken, you’ve found support that lifts you up. Feeling “not alone” is half the battle. My 3-year-old daughter Elsa starts preschool tomorrow, and I’ve been so nervous to lose the support group of therapists that comes to my house virtually every day to work with Elsa. But I’ve seen so many doors and windows open, during the transition time. The school she’s going to is amazing, and many of our therapists will be continuing to work with Elsa privately. They seem to love her and want to help us keep the momentum going. It means so much. Please keep posting on the site! I want to hear all about Lily’s journey.

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