Things I've Learned

Being a parent in general changes your perspective on the world. Being a parent of a "special needs" child changes that perspective even further. Being a gay mom to a special needs child blows all preconceived perspective out the window. I have days of absolute joy and content amongst the stress and chaos. I also have days of bitterness and jealousy. The difference in the days seems to depend on sleep, friends, family, and the next "thing" we get to deal with. In general I have learned 10 things from my first 17 months as a mother.

10. Appearances can be deceiving. A smile slapped on my face doesn't mean nothing is bothering me. My daughter looking "normal" doesn't change how many things are not normal. Us living in a house and paying all our bills and having two cars does not mean that we can afford the insane prices for medical care (even if we traded down for shoes to walk everywhere with and a cardboard box to live in we still couldnt afford it). Just because my friends look like they have everything; healthy kid, easy conception of their second or third or forth, money to go on nice vacations, etc doesn't mean they have it easy.

9. Asking for help is essential. In the south we don't learn to ask for help we learn to offer help when we feel like someone needs it. I remember as a kid taking meals to neighbors or teacher friends of my moms because "they are having a tough time". I remember in college friends coming over to help me paint and move in to a new place and all of that without me asking...they just knew I was moving and offered to help. I'm new to the concept that you must ASK for help. That idea seems so demoralizing to me but I'm trying...and not for me. If I were asking for me it would be totally different things to help with like dinner and fun stuff like that. Instead its money for my baby so we can buy her medical stuff without having to put it off because we can't afford it.

8. Specialists are there to scare you or discredit you. Almost every specialist we have seen has done one of two things. They've either scared us half to death with the "possibilities" of this condition or that or they've completely blown us off because "she's so cute". Seriously I got to the point that I walked in and said yes I know she's cute can we move beyond that now. *Note* we did have one neurologist in St Louis make us feel amazing, however we did have to drive 4.5 hours to see the man.

7. Stopping for caffeine and chocolate after a huge appointment is essential. I'm not talking shots at the pediatrician (which I honestly used to call a "huge appointment"). I'm talking after hearing from the neurologist that your baby's brain cells didn't migrate properly or that she has epilepsy or that pudding is going into her airway or that she may have some obscure horrible genetic disorder that's only seen in .0001% of the population or the appointment that says your baby is going to surgery in just two days for a tube to help feed and hydrate her. Those are huge appointments. Those require a little caffeine and chocolate.

6. Milestones are a crock and a half. Milestones for infants are stupid. Sometime in their first 6 months they should do this or that. Well are they delayed if they do it at 7 months...of course not because there is a caveat that says +/- 3 months. I wish babycenter would not send out the emails saying your child is 43 weeks and should be doing this and that. My advice IGNORE milestone charts until they've missed the milestone by more than 6 months.

5. Figure out who to tell and who not to tell. The last thing you want to hear when you've just been told something major and you share it with someone else is that they don't agree or you are being too sensitive. Find people that will cheer you on, hug you, and pick you up. Ignore people that judge or second guess you in matters dealing with YOUR child. It's hard enough as it is to walk into a test, find out something major is wrong and that it requires surgery within a week ... oh and the surgery doesn't actually help the problem is just bypasses it.

4. Take time every single day to acknowledge all of the wonderful parts of your child and your being their mother. My kid is awesome. She is courageous and so darn cute. She can walk independently. She loves food. She plays well. She loves on her toys. She "reads" books. She gives open mouth kisses. She is starting to talk but has always communicated. She carries a purse. She puckers up for chapstick. She sits still for her nails to be painted. She is absolutely hilarious! She is well TODAY. She can walk unbraced RIGHT NOW. She is not in visible pain RIGHT NOW. She is playing by herself RIGHT NOW.

3. Don't be afraid to fight like hell, but also remember that sometimes patience and persistence are better tools. Fight for your family. Fight for your kid. Fight for your friends. Fight for your friends' kids. Know when to question a doctor. Know when to ignore a resident. Know when to demand attention. Know what information to give out and what information to withhold. Know the system. Through the battle to get Delaney the attention and care she needs Jess and I have learned the hard way what to disclose and what not to to which doctor because it changes!. We've learned when and how to be persistent. We've learned when to go around a doctor and see another one. We've also learned to research what tests are for and what possible outcomes are so when they throw out tube placement directly after a test you don't go completely nuts!

2. Find a friend or two that "gets it". I found my biffer on babycenter. Our daughters could be twins born at different times. Every. single. thing. is. the. same. They even look alike. But aside from them, K and I are also very similar. We get each other. We fight for the other. We offer advice and comfort. We put each other in check when necessary. We know when to discuss a topic and we know when to distract from a topic. We obsess and research. Together.

1. Marry a spouse that is amazing. Make sure that person is willing to not only going through all the good times and the slightly bad times, but is also willing to go through the awful and terrible and scary and painful times. My wife does that. We are not perfect. We fight and argue. We cry and scream. But through it all she is the love of my life. She is the most beautiful woman I know. She is caring beyond measure. She gets me and picks on me. She gives me long hugs when I need them. She lets me freak out. She is the biggest reason I'm not in the looney bin after the journey we've been on for the past 17 months. I love my wife and could not even imagine someone better to walk beside me than her.


While I was up for an hour and a half with Delaney last night while she screamed in pain (incision, gas, not sure) I thought about these things. I thought about the lessons I've learned. Whether your life is exactly as you planned or you've taken a little detour from the path of ideal to the path of "this works too" enjoy the journey...learn the lessons you are meant to learn. Celebrate triumphs, recognize struggles, and always surround yourself with positive (people, ideas, things) because otherwise you will go NUTS.