Three Worlds

I had seen a post last night that was written here but I really have to share it here to go along with what this post is about. And no before anyone gets their panties in a wad, this is not a pity party post so read it for what ALL is being said...... 

"As a mother to two little girls with Down syndrome, I need parents of typically developing kids to know something.

I have needs.

And yes, they may be a bit special because I have "children with special needs."

Parental support from others in this crazy business of raising kids is essential in a mother or father's life. All too often parents of kids with special needs are isolated because their experience is vastly different from others. It is painful when support falls flat, or if it doesn't show up at all.

How do you act around your friends who have children with special needs, or around the woman at school you see at pick-up, or the dad standing behind you in line at the grocery store?

Here are a few suggestions for you:

10 special needs of special-needs parents:

• We need you to bring it up. Ask us our stories. It's OK to ask questions. Most parents of children with special needs would prefer that others ask them about their child directly, rather than avoiding the topic. A smile or friendly "Hello!" is an easy icebreaker.
• We need our kids to have friends. We want you to invite our kids over for play dates. If your child wants to have a play date with my kid or invite him or her to a birthday party, encourage it. Call the other parent and simply say, "How can we make this work?"
• We need you to share your concerns. If you are concerned about something regarding my child, by all means, tell me about it. I may not have an answer for you, but I sure will appreciate a conversation about my kid. But we don't always need your advice. Feel free to talk to us about a new therapy or diet you've heard about. Just be aware that we've probably already heard of it/tried it.
• We need you to make an effort. Effort goes a long way. Educate yourself about my child's special need. For instance, learning simple signs so that you can better communicate with a child who is deaf (and uses sign language) would be appreciated.
• We need you to prepare your kids to hang out with our kids. If you know you will be spending time with my child who has a disability, talk to your child about it beforehand. Talk about behaviors, and ways your child can play with my child. Need ideas? Ask!
• We need you to be considerate. Consider the age of the child with special needs. If it is a new baby or a younger kid, I may not be ready to talk about this parenting path I have found myself on. But that doesn't mean I won't ever want to talk about it. Follow my lead. I'll let you know.
• We need your tangible help. Offer to bring over a meal, or help at a doctor’s visit. I'd love it if you hung out with my kids with special needs one afternoon so that I could take my other kids to a matinee.
• We need you to treat us like other friends, too. Talk about other things with me besides my child with special needs. Believe it or not, I may just want to gossip about Angelina and Brad and their globe trotting kids.
• We need validation. Don’t dismiss my concerns by saying "oh, my typical child does that," or my favorite "well, then my kid must have a disability too, because he/she does XYZ also." When I open up about a struggle, I want validation, not to be blown off.
• We need invitations. Don’t assume I'm too busy. Ask me out to eat or to a movie. I may not be able to get away as easily as other friends who don't have kids with special needs, but I'll go if I can, and if I can't, your invitation will make my day. And ask me again!

What do you think? Agree with this list? Have something to add or omit, please do in the comments!

Also, if you'd like a PDF of this list to reproduce,

Check out Gillian's new book, Still Life: A Memoir of Living Fully with Depression, and visit her website, http://www.gillianmarchenko.com." 

So yeah, my last post about reacclimation, I'm still fighting with somewhat. Just a little differently. This post is kinda a part two.

Since the last post, I have learned that our daughter will have her tonsils out next month, we have a trip to Dallas again coming up and two to Little Rock plus Camp Laughter (Arkansas Children’s Hospital's day camp for kids with craniofacial anomalies) before the tonsillectomy along with pre-op and labs for that. After that, we have sleep studies again (hopefully) in August or early September so I can have reports before doing Dallas again in September, this time for both kids.

The annual Children's Craniofacial Retreat is going on now in Florida. I remember the only one we have gotten to do so far, was in Louisville 2011. We had a blast, minus the tornado warnings as we drove in! Yet even there, it was somewhat hard to fit in because we had never been, not been since and the syndrome my children have is "minor" compared to many that go so the kids really can't relate to ours and vice versa.  Sometimes I feel like we don't fit anywhere..... My daughter and son both share a craniofacial syndrome (Muenke) but I don't see any camps or retreats for those with Chiari, and he's too young if there even is anything. Now that my daughter is old enough, I am hoping there is a camp for kids with asthma or migraines (something) that she can start doing. Something fun...

I think part of my thoughts today stem from cabin fever. Not from being stuck at home but lack of social life, other than people wanting me to bail them out (Not jail), or financially contribute to things last second. My social life otherwise this summer is doctors appointments and hospitals. This summer, has been at home mostly, other than my son's surgery. He isn't allowed to do anything that would chance him hitting his head. Swimming is out too. The blog post copied above also struck a chord with me. Stuff like that always has.

Nothing has really gone on this summer that I know many have done or will be doing. You know, I'm somewhat okay with that. I'm better with it knowing that at least while my son was having surgery, my parents gave my daughter a fun two weeks. Everyone is busy with VBS at different churches, vacations, retreats, etc, I get that. When I have my daughter asking me why she can't do this or that or doesn't get to go to this or that, kinda makes it hard to swallow and explain to her at least some sort of possible lame reason why. It's hard to explain any time of the year why she isn't invited to birthday parties and sleepovers, why maybe one friend, if that of 20 invited ever comes to hers.

How do you do that? How do you explain to a child why the "normal" world works like this? I can suck it up and deal with it when I'm left out, I have my whole life, but why to a child?

We live in two worlds. Well, three in a way actually. One world is "normal" society, where most live there. The other world is the special needs world where everything us upside down but also has hidden blessings and sometimes really dark days. The third is what the two make together, yet sometimes where also you are when you know you fit in neither of the first two.

We are neither yet we are. Makes sense huh?

The "normal" world is where life is normal, no appointments or medical beyond basic "well child checks" type thing. The special needs where it is often about appointments, therapies, hospitals, surgeries, etc. Yet that world also has camps and retreats (If you have the money) for the kids and families to participate in. You also have the opportunities to share your stories with other families and hopefully help them some too. The dark side to the special needs world is the really dark days of either long hospital stays, days of war with other people to get what your children need, crashing diagnoses, death, etc.... Then the third world is a conglomerate of the other two. You are neither "normal" nor all "special needs" either.

Sometimes you are a blend of two, sometimes only one, sometimes all. All together yet completely separated by borders. 

It makes it hard to know where to be, how you fit if you fit at all and to find others who relate to you at all. It's probably all my fault but even at MOPS, I struggle with this. It's hard sometimes because I hear about everyone else's kids doing this or that and my son isn't...... He's just now really talking and it's not in any sentences. It was like that when my daughter was that young too but it's harder this time.... My son has carved his own path entirely.... We don't know what to expect with him at all. 

You listen to people talk about how good their child is doing at ______ and yet you sit there realizing that yours do none of that, either because they can't or there is no funds/time for ____........... 

You feel joy because you know how blessed you are with your gems yet shattered at the same time because of what they are not doing. 


When you talk to other people about this stuff, you are told that you aren't looking at your blessings enough, having a pity party, "so many have it worse so get over it." "You need to pray and find peace more." and the list goes on.... Nothing is validated and most is minimized so then is it justified, or do I just need to suck it up and get over it? Am I just cynical and pessimistic? 


I don't think that's what Jesus would say to me though. I think Jesus would say something like this: "Find joy, as God has given you nothing more than you can handle. (Easy to say sometimes) Find comfort in Me and I will give you rest. Everyone else may fail you or worse, but I will neither fail nor forsake you. Your children and you have a purpose. You may not understand now what I am doing but someday you will." 

May I always remember....... May it be easier too.... May I always remember that this isn't forever, that I try to focus on the good of the day, not whatever didn't go right..... Some days will be easier than others...... May I feel and see the good in others better as well.  

May I finally also learn contentment and peace, no matter what or where I am.....
Bear the shared blog post in mind with those around you too.....


Blessings!
~ Special Momma ~