Marvelous Monday

I survived! I know there is a celebration of single motherhood, but it is not for me. I do not know how women do it alone- I need Dave. Maybe it’s not sleeping alone, or someone to help out so I can pee alone. Whatever it is. I need it. I need him. I am SO glad he is home! Ten days is far too long to be without such an amazing Daddy- Addie was THRILLED to see him! We missed this face, both with and without glasses…

 

This week (and every week, really) I am thankful for my District One family.

Which brings me to my dwarfism fact of the week… As I’ve mentioned before, there are 30,000 (approximately) people in the US with dwarfism. This means that of the minorities, my friend Kate says it best: dwarfism is a rare minority.

We are in District One, which encompasses a LARGE amount of space. There are people from the tippy top of Maine all the way to Connecticut. It is hard (both to travel and afford) to go to all of the events, but when I heard we had a Southwick’s Zoo trip planned, I KNEW we needed to be there. It wasn’t until I was walking to the car, reflecting on the day, that I knew how badly I needed to be there.

Time and time again I’ve told myself different affirmations about life, parenthood, being a POLP… but when I am with the moms and dads who have walked my path before, I feel immediately drawn to them. One mom that I’ve met before feels like my sister, and a woman I’ve only ever emailed a few times listened to my life story. A family new to the community, but not to parenting made an immediate bond in my heart, and one dad (of the many awesome ones there!) showed me that to love a child with a “disability” is no different than to love one without. Parents I met last year saying the words, “Addie, you’ve gotten so big!” meant more to me than I can put into words. She HAS gotten big! …but not big. If you know what I mean. When you hear things like “her head is so big”, “she looks different”, “look how tiny” (the list goes on)- hearing how big she’s gotten, how beautiful- seeing other LP children watching a babe just like them. It was an experience I needed.

Watching children a few years older, 10 years her senior and adults with dwarfism, I truly learned the meaning of the words: Everything is going to be OK. Addie might have surgeries in her youth. We will be OK. Friends will be bigger, but there will be friends. Husbands and wives will find each other. Maybe there will be babies. Whatever happens, everything will be OK.

As I focus on the now, I see that Addie has friends who love her and I do, too:

Finally, when I look at our extended family, I recall memories we made before and ones that are new. Times that we will spend that will mark each Summer, Fall, Winter and Spring. I will remember these times- the first time a shy babe came over to me and dropped her chin to my shoulder, seeing Addie as a new young member, sitting with the kids who didn’t quite make the height requirements for the Sky Ride, loving how gentle a lanky 8 year old can be with my sweet girl and how flirtatious he is the next moment with a 10 year old, beautiful girl with achon. Watching children revel in summer play, explore new friendships and not one person mention being small- except for the silly “who rides in the wagon next based on the most recent surgery” competition (all in fun!) or making sure anyone in a brace is nice and cool in the sun- these children are all just kids. There are so many days when this will, quite frankly, not be the case. There are days that will be hard, but these are the times and the people who will provide some of the best days of all. This is my family. I may not have consciously chosen them, but I am so thankful to have them in my life and will continue to make the effort to keep them close.

If you wondering where you can get local support, please look into the LPA district sites and contact your local chapter. I promise, you will find a group that you can learn from, laugh and cry with, and feel normal (my n-word) with. Interestingly, Peter Dinklage says his parents had these groups where he grew up (in North Jersey) and he sort of mocks them as support groups for parents (although I love this interview). Although that may have been his experience- as he did not keep in touch with the other children he’d met, I have to say, watching our babies run around and play with each other- getting to see friends that they live far from but have such great memories with, I know that staying involved in the community will be more than just for me, but for Addie as well. Just like I like to be around other hockey fans, I’m in groups for just new moms, Dave has his computer-tech-savvy groups, Addie will have her groups. Some may consist of other swimmers, pianists or princesses, ballerinas or t-ball players- and one group will be of other children who, like her, have a form of dwarfism.

My random of the week is silly, but when you’re in Rhode Island and your husband is traveling abroad, you get jealous. By “you” I mean ME! THIS hotel is somewhere I need to stay! Dave sent me a bunch of pictures, and these were from his hotel- The Bellezza. Taipei IS VERY HOT during this time of year, and in an eco-friendly manner, many businesses use the air conditioning sparingly. In all the heat and sweat, Dave loved his hotel room as his place of rest and rejuvenation and I did too… at least in theory. The rooms are HUGE and super convenient to get places, including public transportation and their World Trade Center (where he was working for most of the week).