Tomorrow we say goodbye to Jake. I’ve tried to be silent to protect Ray’s privacy. He has been Raymond’s companion. Tonight I broke down and cried as I snuggled my head into his huge black body. You know what that dog did? He comforted me. He licked my tears away and nuzzled his head into my shoulder. I could write a million words about Jake. I could pen a tribute to him or share the special bond he had with my husband… but I won’t. Instead I will acknowledge that tomorrow our family will change. Our hearts will be a little broken…. because we loved Jake.
I have a lot of “friends” now on Facebook who have children with Wolf Hirschhorn Syndrome. Most of us have never met in real life, but we have formed a unique community of moms and dads who support each other. We ask each other questions and offer answers – which is such an amazing thing. I mean…. in less than 10 minutes, I can get a list of 30 seizure medicines, all I need to do is ask, “what meds are your children on to control seizures?” I get the advice of every doctor that every parent of every kid has ever seen. Of course, this advice is secondhand – and doesn’t replace the advice of my own doctor, but it is a great place to start.
There is one area of questioning that I happen to be an “expert” in… it is also the area I should excuse myself from. Education.
Let’s imagine this. You have a child, who uses a feeding pump. Suppose that child can walk for short distances but uses a wheel chair regularly. Maybe this child has a few words, but doesn’t yet speak in complete sentences. You go into school… the first time… for an IEP meeting. What in the world happens? What are your expectations? What “education” should your school provide for your child? Where should your child be placed? What will you say?
No matter if you have a child with a severe disability or not, these questions run through your mind. How intimidating it must be to be the lone parent in a room full of teachers and administrators discussing your child.
As a person on the other side of that table… there are some other things to consider. If you have enough money for ONE speech therapist, how many hours a week will you devote to one student? And… what if you have two students that both need services… one knows 4 words and the other needs pronunciation assistance? In a perfect world, each student would get speech therapy every day. But, if there are 100 students and 1 therapist… this just isn’t possible. *sigh* See the problems? There is only so much money in the bucket. Only so many resources that can be divided out – where do you best place them? I feel I can talk about this because I know I will some day attend an IEP meeting on the parent side of the table.
So why this post? A “friend” asked about her son’s bus time. He was on the bus for 1 1/2 hours before and after school. She thought that was too long on the bus. To be honest… that is a long time. I’m trying to picture my son on a bus for 3 hours a day… not our “best educational situation.” We began to discuss what to do about this situation. She was afraid to be THAT mom. I’m going to tell you all… It is OK to be THAT mom. I WILL be THAT mom. Allow me to explain.
Alexander is the hardest working person I know. Just to sit up for 5 minutes is more work than I work all day. Everyone gave up on him. They said he would never blah blah blah. I won’t give up on him. Ever. I know people who started walking in their late childhood or even teen years. I will not give up hope that walking will some day happen for my fighter… but it won’t happen without therapy. The same goes for eating and talking. You never know when someone with a “delay” will master a skill. That is why it is called delay – because the skill is achievable. Alexander is a fighter. He demonstrates more courage, effort, and “fight” than I ever could. But I can fight for him. In those areas where I can make his life easier, I will. I will make sure he has therapies – even if I have to fight for it. I will make sure he is included with other students – even if I have to fight for it.
I will trust my “mommy gut” and fight for all the things I think he needs. I will be THAT mom. And it is OK. It is OK – because who else is going to fight for him? Who else will stand up for him?
It is OK to be THAT mom.
What if you were finally given your dream job…. and still were unsure if it was the path you were meant to take? How do you know what turn you should take when that road forks? When both roads seem “well traveled” and laden with selfish desires? When the wrong choice could have unforeseen consequences for those you love the most? When you can’t help but wonder if your selfishness is taking over? I’m turning to my blog even though I should probably muddle this alone. I’m posting this because I have been prayerfully asking this question for over a year now. I think I find the answer.. then I find myself asking the same question again. And the truth is – it doesn’t matter which answer I come to – I still question. So the fork in the road looks like this….
If I continue down the path I am on, I will go back to work. I will continue teaching. I love teaching. I love my students. I have always felt this was my path. I also feel like I have the ability to make a difference. I want to make a difference. If you asked me what I was good at, I would probably tell you teaching… maybe a little delusional… but when you are passionate about something – you are just passionate.
Other than the satisfaction of my job, we will also have the extra income. This allows us to take trips and do things with our kids. We can go to the “explore” museum, see Thomas, etc….. – things the kids like. We will be able to buy a bigger house and have a little more space. (In the winter – my blogs may take a downturn as it is difficult living with all 5 of us in less than 1500 square feet.) We will be able to move to a different school district – our preferred district – for when the kids start school. The twins are loved by their sitter. See post HERE for more details on that. They fully get love, nurture, quality time … all those things. Alexander is loved by his nurse. I mean loved. She takes great care of him. And, I know – many will say – they are not you … but they honestly are the next best thing. There is also the issue of therapy. Alexander gets better therapy when his nurse is here. Her sole job is to take care of him, so she makes sure he gets in his stander every day, etc. I feel like we are much more relaxed and some days he gets a lot of therapy and some days we are really busy.
So … the short list is: Pro’s … Pure enjoyment of teaching, job Satisfaction, time with adults, the knowledge that I’m making a difference, extra money, bigger house, better school district, and the children are well cared for.
Why the dilemma?
First – I’ll allow myself to be the martyr. I will tell you that I miss my kids, because I do. I really feel this sort of panic clutch my chest when I think that we will not have these special moments together. And…. they love each other. Every day it is more and more evident. Andrew and Addison lay down with him all the time. They kiss him before bed, before they walk out of the room. They ask where he is the moment they wake up. They want to have their diaper changed with him. I mean…. it is beautiful to watch. The idea that I will be breaking up this trio in a month brings tears to my eyes. There are other things, also… Being in charge of the coordination of all these appointments and things that happen in our lives is taxing. It really is. Sometimes I get calls and I just have to take them. Again, I’m completely supported by the people I work with, but it doesn’t change the fact that it has been a nice found freedom this summer to just call the pharmacy/doctor/etc. when that call needs made. But, I’m not all martyr.
I have selfish motives also. I’ve discovered this – this “little something for me.” And, I think I might be or at least get good at it. I’m in the process of signing the contract with BlogHer. I’ve been getting these amazing e-mails about how something I wrote inspired someone. Inspired? Really? It is a lot to absorb… and if I take those words at face value, then I ask myself… can I find that same self satisfaction from blogging? Could I make myself more active in the community or church and get a similar satisfaction as I get from teaching. Could I be as passionate or as “good” at this as I am teaching? I also have always loved photography. I love it even when I don’t have my good camera. The pictures from my last post were all taken with a point and shoot camera or my cell phone. I also don’t have Photoshop (which I won’t be able to afford to buy if I quit my job) … so all my edits are done with different “free” programs. I think… could I be better with better tools? Could I make a bit of a living with blogging and photos? Ahhhh… but then comes the rub. If I am a “stay at home mom” … when would I ever find time to indulge these other passions? Would I even have time to blog or take photographs? Would we all drive each other crazy?
In the past, when I have been at home on maternity leave, I have always felt so – insignificant. I know there are people who will tell you, “raising a family is the most important job you could ever have.” But – I have always been more of a career motivated person. However, I have never had these other creative outlets to find significance in.
*Sigh* There is also the reality of this economy. How can I even bring up the idea of taking some time to sort this all out when people are losing their jobs left and right? When school districts are not hiring? When I finally have my classroom, my curriculum, my supervisors, my … everything I’ve ever really wanted professionally?
But, can I handle another year like last year? The phone calls. The appointments. I ended up exhausting all leave. I missed appointments. I ran out of the building several times. I cried sometimes. Often, I went on little or no sleep….
I know there are people I work with that read this blog. I realize this post just might make a lot of people think ~ really? ~ she’s back to this old song and dance? ~ we need to know if she’s working or not! ~ I thought she decided this already! I guess this is a bit of the problem also. Will there be a point when the blog for me gets me into trouble? We all know the “stories” about bloggers who’ve stepped one step too far. I don’t want to worry about that. I don’t want to mess up. (There are an awful lot of “I’s” in that last bit.)
And there is one more thing I’m going to throw into the mix, just for the sake of honesty. Our beloved dog is being put to sleep on Thursday. Truthfully, Jake is Ray’s dog, and I haven’t blogged about it specifically to protect Raymond’s privacy. I thought I was ok. I love Jake… but – he’s not my child. There is the very real possibility that this emotional roller coaster has been prompted by the dread of putting him down. Maybe I’m not as “ok” as I thought I was.
Ok. Hit me with it. I’m desperate. I’ve prayed. Ray and I have beat this horse to death. I’ve talked to my parents. I’ve talked to my friends. I’ve talked to my co-workers. I make a decision. I change my mind. I make a decision. I change my mind. What do you think? Give me a real answer… I can’t promise that I’ll do what everyone says, but I can tell you this – I welcome all perspectives at this point.
We’ve been doing. Painting, playing, going, …. spending time together. Loving
We are all about the trains around here. Raymond is on this e-bay / craigslist kick about the trains – and the kids are loving it. Brilliant idea – buy trains at Michaels and let the kids paint them. They LOVED it!
Is there any wonder my kids have a fascination with Doctors? Funny fact – when my kids look at the framed wedding picture of Raymond and I on the wall – they say, “Mommy is a princess and Daddy is a doctor.” I have NO idea where this idea came from, but it is so cute.
I’m working on an entire post about this…. how my kids have really bonded this summer. They love each other. And I love this…
Alexander decided he didn’t really feel like eating today. So he put his arm into the bowl of peas. And when I scolded him – he smiled. Little stinker!
Finally – story time before bed. Lovin’ this family time.
Tomorrow we will make our way to the geneticist. I’m preparing myself. I know what our conversation is going to be like. We haven’t seen him in the last 6 months. To be honest… seeing him is probably a waste of a day. The facts are clear: no one truly knows how the specific genetics of the 4th chromosome work. For those who have children with smaller deletions will tell you the smaller the deletion, the less severe the syndrome. Those parents who have children with large deletions, like ours - will tell you deletions don’t matter. The only genetic news I would love to hear is this: Alexander can do anything. But we are going.. and will continue to go until we feel it is really no longer useful.
|First round of AM meds|
Here is the low down on the last 6 months. This spring, Alexander continued to have uncontrollable seizures. He was transported by helicopter 4 or 5 times to Hershey. He is now in the process of being weaned off his third medicine in an attempt to control these seizures. At this current time, Alexander is completely doped up. When you wean from one medicine to another, you have a week or two where the body is overloaded with both drugs: you add the new drug before you begin to back the old drug off. Alexander is on one his largest doses of seizure medicines ever during this week and next week. So what will the geneticist see?
A 14 month old 10.5 lb baby that lacks head control. (He had head control until he put on 6 oz in 2 weeks and his muscles haven’t compensated for that weight gain.) He will not roll around, tolerate tummy time, tolerate the Wingbo, tolerate sitting for long periods of time, tolerate standing in his stander for long periods of time, or tolerate extended periods of oral eating. Because he is completely drugged up and exhausted.
What he won’t see….
Alexander sitting almost unassisted.
Alexander taking assisted steps
Alexander enjoying his stander – he can be in it for hours.
Alexander enjoying eating – or eating macaroni and cheese.
Or Alexander talking
Because Alexander will probably be too tired to show off those tricks.
But what he should see is this.
Life through the eyes of a child…. He should witness the miracle of a medically fragile child.
Let me show you some miracles. Medically Fragile children who have had life threatening stays in the hospital, who have pushed through the sticks, needles, seizures, …. the unbelievable pain of constant tests and medicines to try to determine and control a medical problem. I don’t want to share their stories… if you are interested, you can follow some of the links and read about their own special road they travel. I do want to praise the miracle of God as demonstrated in these children labeled as medically fragile.
Mia. 4 months ago Mia spent over a month in the hospital. The prayers that went out for her were amazing. Because her life was indeed “fragile.” She fought. She barely cried. She was courageous. She showed and needed love.
HERE is a video put together by her parents….
Tanner. 5 months ago Tanner spent time in the hospital for severe dehydration – even though he was receiving his nutrition via g-tube. His color spoke volumes to the doctor. It happened overnight. … because his life was indeed “fragile.” Tanner didn’t cry. He didn’t fight. He was courageous. He showed love and needed love. Look at that face. I screams, “love me!” “I can do this!” And he can.
You can read about his journey HERE.
Kaylee. 3 months ago Kaylee spent time in the hospital while doctors raced to place an emergency g-tube in her for nutrition. She was not receiving enough nutrition, the button wasn’t placed correctly, and her “medically fragile” condition was again evident. She didn’t fight. She was courageous. She just needed love. Her mom has a blog – but you need to contact her privately to read their journey.
Bria. The beautiful baby who inspired this post. She is Alexander’s soul mate. You would never know that she was running a fever in this photo. Or that she has several seizures a day. Or that she is running a little “competition” with Alexander on who can have a seizure the longest. For several months this spring, Bria was in the hospital more than she was out. She doesn’t cry. Not even when they continue to stick to find a vein because most veins are too small or blown. She doesn’t fight. She is “medically fragile”…. but she is strong.
And Magnolia. Alexander’s Twin. Just last month, my heart prayed for her healing. One day, she just became ill. One day. She was fine and the next she wasn’t. Just like all of these “medically fragile” children. This image haunts me……. It haunts me because it has been all of our children. Magnolia is a fighter. She is so tough. I’m thinking about my twisted ankle from yesterday – that I cried for over 10 minutes about. Magnolia does not cry. She fights. She is a miracle from God. Yes…. medially fragile children exist. Yes, it is a journey of ups and downs that these children experience. BUT they are miracles. They are courageous. They can tolerate pain that none of us can even begin to imagine. You can read more about her journey HERE
Finally, my baby. Is it any wonder he is not always at his best game? We go forward. We go backwards. We sit, and take a break. We stand, and take a break. We are constantly fiddling with his medicine – just to find the perfect cocktail. And we will. But Alexander doesn’t cry. He doesn’t complain or whimper or …. even show real discomfort. He takes it. He shows me how to be courageous. He shows me that a twisted ankle should not leave me sobbing for so long.
How can you look at this picture and not see a miracle from God. Just look at him. He is perfect.n They all are.
First – I must tell you that before Ray and I were married, we had to complete “marriage counseling” sessions with our pastor. During one of those sessions, we examined – in depth – the way our parents react to situations, values they handed down to us, and practices we have unwittingly adopted from them.
Next – I’m going to tell you several hypothetical stories. These are of “sensitive” issues, so I don’t want you to think – for even a moment – that they could be about me or my family.
Hypothetically, there is this couple that had an anniversary.
Hypothetically – the wife in this couple unwittingly inherited many habits from her own father. One of those habits was a relaxed attitude about things that are not “essential.” For example… this wife’s father (hypothetically) probably has at least one vehicle in his driveway that is not inspected… Hypothetically.
Get the picture?
So – hypothetically – the husband surprised the wife with a great night of fun for their anniversary.
The husband made dinner reservations, had flowers sent to their table, and took the wife out to play a little roulette – which this hypothetical wife liked to play once or twice a year.
It was a great evening and the couple left when they broke even – they didn’t even lose any money. Everyone was all smiles and love. It was at this point that the hypothetical situation went awry.
As the hypothetical man went to retrieve the flowers, the hypothetical wife went to ask the nice security guard where she could cash in her chips.
That is when it happened.
The hypothetical security guard asked the hypothetical wife for her license.
And lets just say… for argument’s sake… that the hypothetical license was expired. Hypothetically, because the wife had put on a few pounds and didn’t want to be fat on her license photo. And …. hypothetically … this security guard wouldn’t let the wife back on the floor… and .. ahem… called for more security back – up.
And the hypothetical husband rounded the corner as 2 hypothetical security guards are arguing with his hypothetical wife over her hypothetical license that the husband told her to renew months ago.
Got that mental image?
Sort of a romantic dampener.
I sure am glad this story is all made up – otherwise – some people were probably in trouble… or at least very thankful they have an awesomely forgiving husband.
So… As I’m testing all my pants and shirts to see what can go on the “soon I will fit into” pile – I find myself laughing at the ridiculousness of last year. I have gone to some extreme measures to deny that I was gaining weight. I thought I would share some of my fashion advice.
1. If you have to lay on your bed to zip the pants… don’t wear them.
2. People can recognized maternity clothes… don’t kid yourself. If you are still wearing maternity clothes at 1 year postpartum – buy a bigger size off the “normal” rack.
3. If your cousin (who had a baby and was immediately skinnier than you) offers you her old “fat clothes” … but they are all size petite because she is short…. don’t take them! You will just end up looking chubby and your ankles will stick out. (I didn’t wear high heals all last year because…. um…. well – I didn’t want to draw attention to my ankles.)
4. Buying an entire rack of “poofy” shirts to hide your “muffin top” doesn’t work as well as you think it does.
5. One more – I just actually did – sucking it in while standing on the scales – really will not make a difference in how much you weigh.
Let’s face it. If you are committing 2 or more of these offenses, e-mail me. We can talk. I’m not a fashionista – but I do have some experience in horizontally challenged fashion faux paux.
If you haven’t noticed – there has been a debate about how much weight you can subtract based on the added poundage of your head. So – I weighed my head. Just as my family has always suspected….
Ok. Super cool. So excited! Can’t contain myself!!!! I bought a website. (It only cost $10.00) – and I think it is awesome!!!
How awesome does that sound? I’m a dot com. So happy. If you come across a “redirect” page – just go ahead and let them redirect. I’m so psyched that we are a dot. com. AWESOME!!!
And… in other blogging news. I’ve decided to join the group BlogHer. I was issued an invitation a few months ago, but I was really leery because I thought maybe I could go it alone. I’m going to try this – it is a 1 year contract and I feel pretty blessed that they like our blog enough to ask. … so here goes!
Let’s get real here, Ray. We’ve made it this far on love. And babies. And more love. But – we have to be realistic. As I mentioned last night, we have some differences. Sometimes, those differences rear their ugly head. I would say that ugly head rears itself 80% of the time in the car. We are terrible car companions. It is not shocking…. it is genetic – and you know what I mean. I’ve decided to eliminate 80% of our disagreements in one fell swoop. I love you that much. It is called….. G.P.S. You better love it. If you don’t love it, you will learn to love it. Imagine it – us going somewhere without getting lost; us getting in the car without you asking me for the 1,000th time if I know where we are going. Imagine us just driving as some nice lady tells us when to turn … how LIFE CHANGING would that be. I love you. I can’t wait.
They said I should meet you.
I have no trouble meeting people, thank you.
They said they could arrange for us just to get together.
I don’t do blind dates.
They said we would be perfect for each other.
I need some time alone… I don’t want to date anyone right now.
You were everything I wasn’t. You were an athlete… A race is not my idea of fun. I’m unorganized and usually make things up as I go…. You plan itineraries for our vacations. You think 3 words makes a conversation… I leave a 3 hour answering machine message. You are private… I am not. You load the dishwasher with the plates in the back… I load the dishwasher with the plates in the front. (you just said, “this is possibly the worst dishwasher loading I’ve ever seen in my life” as I typed this.)
My one aunt says she has never seen people so opposite… and yet – you are they half that makes me reasonable. And I am the half that makes you relaxed. If ever there was a ying and yang – it would be us. And I love it.
I love the grumbles. I love the itineraries. I love that you plan so I can relax. I love that you help me see the world with a different perspective. I love you.
They were right. Tomorrow will be 5 years since I pledged forever – and your life has been my life for more than 7 years.
Our summer of love brought us together. One summer where 2 teachers had nothing really to do but get to know each other. We hiked to see sunrises. We took spontaneous road trips. You bought me a coffee maker. We camped. We laughed. We talked. I looked… I really looked – for some reason we shouldn’t be together. I couldn’t find one. You were the one for me.
5 years later…. here we are. 3 beautiful babies and a house full of love. Sometimes our differences seem so evident, but … they were the things that brought us together. We were blessed by that blind date. We were blessed by those friends who didn’t give up. Here’s to 75 more years.