Spring has not Sprung

I have been pretty depressed lately. Mostly due to the stresses of my life. Being a mother and not having much help from my husband, dealing with his medical drama and his depression from it. Worrying about being judged because I have a child with a cleft. Worrying about money and how we are going to get the bills paid, food on the table and still have some left over to do something fun. Worrying about my childs daycare. Worrying about my son's eating and drinking issues. The list goes on. I started to try and seek help. I have very specific needs, plus time and money are huge factors. All leads sent me to dead ends. I chose to focus my negetive energy on being an educator and advocate in the cleft community and beyond. I chose to share Jesse's story with those who may not know about clefts and what we have been through. That in itself was a huge weight off my shoulders. I had a talk with a dear friend who listened like I needed her to, that was also huge. She helped me to understand the outside perspective a little bit better. She also stressed about how important it is for me to get some me time. That won't be easy, but she's right. That in itself will be theraputic.

The weather here in the Midwest just sucks this year. Here we are, it's May and it's STILL cold! We've had some good days here and there, but it's just not Spring yet. I am sure this has an effect on people's attitudes. I want to do more, live life more, but it's hard to do free outdoor activities when it's so crappy outside. I have a friend who recently moved to Texas. She mentioned, "People down here are so nice, I think it's the sun." I think she's right. There are higher depression and suicide rates in places that don't get a lot of sun.

There's not much I can do about Paul's medical situation, it is what it is. But I will make more of an effort to make the best out of things. Now if the weather would just cooperate, this would be easier. I want to take evening walks. Hang out on the deck. Play some basketball in the driveway. Play with my son in the yard. Go for a hike in the woods. Go on a bike ride. Either I need to learn to do these things in bogus weather or I need to move to a warmer climate. That's a whole other blog though.

We have a walk planned tonight, I am looking forward to it.

Here's a couple cute pictures of Jesse from Easter Weekend.

One Step Forward, Two Steps Back

We went to Paul's doctor appointment on Friday. I went in there fully expecting to be told Paul needs another surgery. The good news is that he does not need more surgery at this point. The doctor said the scar tissue and bone spur are not creating Paul's nerve pain. Basically the nerve is still jacked from the delay of surgery. The doctor increased his nerve medication and ordered another steroid injection. Just what Paul wants, more needles in the spine.

It's been a little over 6 months since Paul's surgery. His recovery should be further along than it is, but on the other hand this is common when a needed surgery gets delayed so long because workers comp puts up a fight. They actually thought he didn't need the surgery, when in fact he did and it got worse because we had to prove he needed it. Thanks. I just pray this is not perminant. Paul kind of asked that too and the doctor said he generally doesn't "throw in the towel" until it's more than a year post-op without improvement.

We had a great Easter, although it ended up being a crazy busy weekend, but I got to spend 3 days with Paul and Jesse. I love that my company closes for Good Friday. I've had good things happen on past Good Fridays, but nothing significant happened this year. Last year on Good Friday Jesse and I were released from the hospital. Back in 2005, Paul and I got engaged on Good Friday. I have some pictures, but I have not gotten the chance to download them from my cameras yet.

We finally got daycare worked out. Cheryl resigned from the job and I found Kristy to do 3 days a week. She's a little further but I think it's a great environment for him to be in. Being at Cheryl's was perfect when he was little, but now he needs socialization, which is what he gets at Kristy's house because she has a 2 1/2 year old little girl. Plus, I feel so comfortable with him there. We are on week 3, so it's looking like this will work out for a while.

Unfortunately today I got the call from Paul's Aunt saying she can no longer do the other 2 days a week. It was going to happen at some point, but I was hoping this arrangement would last longer. Her son-in-law got a job so she needs to go take care of her Grandchildren full time. So now I need to figure out an arrangement for Mondays and Thursdays. Just when things start going smooth, another wrench gets thrown in the spokes.

Evaluations

EEEEK! I am leaving my office in about 10 minutes. I'm picking up Jesse and headed home to meet with a Speech/Language Pathologist and a Developmental Therapist. I am both nervous and excited. I have a lot of questions. Mostly about eating and drinking. I have a lot of curiosity. Prior to his palate surgery, he was 30% behind with his speech. I am very interested to find out where he ranks now. I will update later or tomorrow on how it goes and what answers we get.

I figured I'd just do the post evaluation update on the same entry since the pre-eval entry was so short.

We made it home right on time. Both the ladies were awesome. They played some games with Jesse and observed him. The DT, Natalie, said that he's just about where he should be developmentally. She wants us to work on identifying objects. I can do that. She doesn't see a need to do any therapy with him. Woo Hoo!

The SLP, Erin, did her thing. Jesse was chatty as usual, so she could see exactly where he was at with Speech. She told us that he's currently at the level of a 10 month old. She said his delay is typical of a child who's had palate surgery. She expects he will catch up in the next few months so she will come back for another evaluation in late July or early August. If he's caught up, no Speech Therapy! She was pretty confident he will be caught up by then. How I understand it is that when an infant has surgery, time basically stands still in their development, so all this makes a lot of sense. Erin also observed Jesse's eating, which he's also behind on. He's probably also just a hair behind with his feeding as well. He's not a big fan of table food (non-pureed food) so she gave me some tips to help introduce foods with more texture. She confirmed that he needs to learn how to suck. She thinks the new sippy cups I got for him would help and she said she would order him a honey bear to help him learn to suck through a straw. So all is well, no major concerns. Whew! Glad to have that weight off my shoulders, even though this just confirmed everything I thought anyway. It's just nice hearing it from professionals.

A Few Updates

The Myelogram went ok yesterday. I think he was in the hospital longer than he was for the discectomy (1st surgery). He wasn't released until 3:30. Between 2 and 3 I hadn't heard from him and it started to make me nervous. He's home and recovering. I felt bad that I wasn't there for him, but at least his Dad was able to help out. We will discuss the results with his doctor on Friday.

On the daycare subject, I found someone! After a few people showed interest then backed out, I found someone who is working out (so far, knock on wood). She's a good friend of mine, we go way back but never got very close until the past couple years when we started to play softball together. She's a SAHM with a 2 1/2 year old. She's a good Mom, I know this. I totally trust her. She's a bit out of the way, but I think she's worth it.

More needles

Paul has another myelogram today. More needles in his spine. This will be his 3rd myelogram. Lets not forget numerous steroid injections too (I think he's had 6 or 7, I lost track). He's been having pain since his surgery in October. He had an MRI a few weeks ago that showed a lot of scar tissue. The myelogram will show if the scar tissue is what's causing his pain. It's likely that the scar tissue is pressing on a nerve. If that's the case it's good and bad news. It means he will have to have another surgery to remove the scar tissue. Of course he doesn't want to have more surgery and we aren't sure if it will come back or not, but at least we'll have an answer. His Dad took him to the hospital for this. I'm glad his Dad was willing and able to help out. I am running out of vacation/sick days and I am not even half way through the year yet! Paul has an appointment on Friday to get the results. I have the day off for Good Friday, so I think I am going to go with.

Guilt

So in the past year I have been experiencing a guilt that plagues me. I know that no one understands why I feel this way except other mothers who have experienced the same things I have. I can't help but feel like I did something to cause my child to be born with a birth defect. Sure I can tell myself that I did everything I was supposed to as instructed by my doctor, but that doesn't take this guilty feeling away. My son has already had the 2 major surgeries to repair his clefts, but he will still have a scar on his face for the rest of his life. The scar isn't prominent and will fade over time, but it will always be there, staring at me as a constant reminder. I can hope that I am able to raise him to not be self conscious about it, but that's going to be a challenge due to the fact that I am self conscious about it. When he was born I was very uneducated about clefts, as I have mentioned before. I thought this was something that happened to mothers that don't take care of their bodies during pregnancy or because it's genetic. Since genetics have been ruled out, this leads me to be self conscious that other people blame me. I constantly feel that I am being judged as a mother when they discover my son was born with clefts. Like I did things I wasn't supposed to do during my pregnancy. Sure I had some caffeine (one cup of half-caf in the morning), approved OTC medications and a glass of wine here and there, but I certainly did not abuse my body in any way. Before I discovered I was pregnant I did take a vacation with my husband where we did some drinking, but had I known I was pregnant, I would not have drank. Plus, drinking isn't one of the known causes for clefts. Drinking while pregnant causes fetal alcohol syndrome and low birth weight, neither of which Jesse had.


I have talked to other mothers who's children were also born with clefts. These women also feel this guilt. These are women who also didn't abuse their bodies. In talking with them, they also have no one support to this feeling except with each other. Everyone around us gives the "get over it" attitude or get told "you didn't do anything wrong". But the feeling still lingers for us. I created a life, a child, who was made from me and inside me. If this little person is flawed, how can I blame anyone else but myself? Even if it was something beyond my control, I still created him. It seems that the fathers don't feel this. My husband certainly doesn't. I'm venturing to guess it's because they didn't carry this life inside their bodies for 9 months while it grew, while the cells became a body, while the body developed a face, organs, fingers and toes.


Am I depressed? Yes. I'm sure this feeling of guilt is not the only cause for my depression. With so many other challenges I have been facing in my life, it's no wonder I am depressed. My husband, once a very able bodied man, is now disabled. He can't even take out the trash or pick up his 1 year old son and hasn't been able to since he was a newborn (because he weighed less than Paul's 10lb weight restriction). The money is a factor too. Paul was making a decent salary before his injury. Now he's only making 2/3 of his regular pay from workers compensation benefits. Note regular pay. Workers compensation does not account for his overtime or tips. So essentually his pay is less than half of what he was making before his injury. This has put a huge strain on us. I really thought that once we started a family that I could get some money saved and switch to part time to spend more time with my child. Now that is just not possible. Paul is home, not working and even he can't spend the day with his son because he's unable to take care of him. So it's disheartening to know that someone else is essentually raising our child for us while one parent is home, doing nothing and dwelling on this. Not only dwelling on the fact that he can't take care of his son, but dwelling on the fact that he can't do all the things that make a man a man. That wears hard on him and it reflects on me.


Had I known we would be in this situation, I would have never gone off my birth control pill. I am not stating that my son was a mistake. I am saying I would have probably waited to start my family. Had I waited, I would still be waiting and my biological clock would be ticking away. So I am not even sure waiting would have been a better choice. Not that I knew all this would happen. Jesse was conceived a week before Paul injured his back, but that's also a guilt I carry. I brought this kid into a messed up home situation. And here I am trying to keep it all together. Not just my feelings but making life as best it can be with what I have. I am not against talking to someone or getting professional help for my despression, but I don't even know how I can make that happen. I definitely don't have the finances and I have very limited time. It's not like I can just leave Jesse with Paul for a few hours a week while I go meet with someone. Whatever I do, Jesse has to join me. I only get to spend about 2-3 hours a day with the little guy, I don't even want to give up one evening with him. So here I am, working through my thoughts on a daily basis and hoping I can become at peace with myself.

One Year

A woman giving birth to a child has pain because her time has come; but when her baby is born she forgets the anguish because of her joy that a child is born into the world. -John 16:21

I wanted to write this blog last week but I didn't have any down time at work or home. Since it's been a year I want to reflect back to this time last year. One year ago my life changed in major ways. Some changes I was expecting as any woman giving birth would. Some changes were not expected. I became a mother and a cleft Mom. As I have stated before, I had no idea what a cleft really was until about 7:45pm on March 31st when I heard the word and met my new born son. Yes, I had heard this word before, but was not at all educated about clefts. I honestly thought that clefts were something that happened to malnourished people in Africa and Asia. Not something that happened to a healthy, middle class, Caucasians living in Illinois. It does happen. It happens in 1 of 700 births. There is no definite cause, it just happens.

Since March 31, 2010 we have had many challenges, but we have managed to get through every single one. We had feeding issues, surgeries, recoveries, stress, confusion, anxiety.... but we have also experienced joy, happiness, discovery, friendship, parenthood and support. Yes, it's been hard but do I wish none of this ever happened? Absolutely not. This has all changed me, in very good ways. It opened my eyes to a world I didn't even know about. I was meant to do this. This child was given to me for a reason.

I love being a Mom. I love my son more than anything else in this world. We had a birthday party for him and it was a blast. Thanks to everyone that came (even though none of them even read this, haha).

Here's a couple pictures from a year ago and from now.