"The Special Mother"

The Special Mother
by Erma Bombeck

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia"
"This one gets twins. The Patron saint will be Matthew"
"This one gets a son. The Patron saint.....give her Gerard. He's used to profanity"

Finally He passes a name to an angel and smiles. "Give her a disabled child".

The angel is curious. "Why this one God? She's so happy"

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you"

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"

The angel gasps - "Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"

"And what about her Patron saint?" asks the angel, his pen poised in mid air.

God smiles "A mirror will suffice"

Week 4 and some perspective

Well, week four is coming to a close and it has been a very inward-looking week for me. First off, I want to put down what this week's workout is and then go from there- jog 3 min., walk 1:30, jog 5, walk 2:30, jog 3, walk 1:30, jog 5
Okay, for some of you out there, this doesn't look too tough, but let me tell you something... IT IS HARD. When I first started this whole thing I thought the 1:30 minute jogging was tough and here I am jogging for 5 minutes straight! That is amazing to me and shows just how far you can come in a relatively short amount of time. But in order to do something like that, you have to be creative with what motivates you through it when you just want to collapse. I found some things that surprised me.
First on the list, I had to find music that would push and pull me through the tougher parts. After thinking back on my favorite kinds of music and what those songs made me feel, I realized that I needed to listen to Lincoln Park. Not some upbeat cardio-class music, but something a little more gritty and LOUD and emotional. It worked great and I was able to just go straight through that three and five and three and five minutes because of it. Then I had to think of something to get me through when I would feel tired or have a stitch in my side or ribs and I decided to do visualization. When I was begining to feel overwhelmed, I would just envision that I was actually in a pool swimming. I would move through the breast stroke and let myself feel the water and the rhythm of the stroke. I would envision the power and strength I feel when I am in that pool and then suddenly, I was feeling stronger and more able to get through that run. I was reading an article not long ago about the power of visualization and thought it was really a great idea. The writer explained that almost all Olympians use visualization before they compete. Sounded good to me and when I did it while I was running instead of before, it was very effective. Lastly, I really thought about why on earth this came to mind as something I want to do so badly. I thought about what makes me look forward to this every other day of the week that I do it and makes me want it enough to strength train in between those jogging days. Here is what I came up with:
I AM NOT PREGNANT ANYMORE. There. Okay, it is a little bit deeper, but not much. Over the last five years of my marriage (that is 65 months), I have been pregnant a total of 3 years, 2 months (or 38 months). To be more specific, I was pregnant the 9 1/2 months with M, when she was 13 months old I became pregnant with G. I did my 9 1/2 months with G and by the time she was 3 months old, I was unknowingly pregnant with E. I did my 9 1/2 months with E and she was born with a genetic condition that no one could figure out for a long time. When E was seven months old, I became pregnant with Z and did my 9 1/2 months with him while in the hospital with Elizabeth quite a few different times. So, tally it all up and you have the four months I was married that I wasn't pregnant yet, the 13 months between pregnancies with M and G, the three months between G and E, the seven months between E and Z, and the two months since Z was born that I WASN'T pregnant. Since I got married November 29th, 2003, I have been unpregnant a total of only 29 out of 65 months. That is A LOT of being pregnant for a five year old marriage and it also means that over the last five years, my body has belonged to my unborn children with everything I ate or did. Nothing I did was allowed to put strain of any kind without a feeling of "oh crap, what if that hurts the baby?", so I would just tell myself to wait it out until I wasn't pregnant anymore.
That time is NOW. I am not pregnant and for the first time in my life I won't be getting pregnant ever again. I can do things with my body for myself that are challenging and exciting without worrying about my baby's well being or getting it going just to have it undone once I am pregnant again. So, doesn't it make sense to start my unpregnant chapter with a BANG and run a 5k? It does to me. It makes A TON of sense to prove to myself that I can do something good without it involving being an incubator to a beautiful baby. I need to feel good about my body and be a good example to my babies on exercise and healthy eating. So here I am, finding anything motivational and exciting to push me through the tough spots because this means so much more to me than a run, it means the beginning of my belonging to me and me alone. A wife and friend, a mother of four of the most wonderful children in the world, and a LaNae that can do anything she sets her mind to. That is what a 5k means to me.

What I Have Been Up To...

I didn't want to post about this until I stuck with it long enough to convince myself I really was going to do it... I am training myself to run a 5k! I have always been a natural swimmer and after my last baby I did swimming and ballet and Weight Watchers and it worked amazingly. But circumstances change things and this time around, I don't have the money for the ballet and I don't feel like dealing with getting into my swim suit lol. So I had to think of something affordable (or completely free) that I could do to deal with my pregnancy weight and I decided it was time to do something I had always admired others for doing- marathons. I figured that weight loss would be a great side effect of the running but that my main focus would be on training for the run.
In order for me to do this, I had to find a program that was for someone starting from absolutely zero running and out-out-shapeness that could take me all the way to my first goal of a 5k (or 3 miles). So I went online and found this really great program called Couch to 5k (). It starts out so easy that even I can accomplish it lol. I also decided it was time to exercise with Darryl because I know how much he struggles with running and I really wanted a buddy in this process. And so I started two and a half weeks ago and I will finish my last run of week three today. I am actually up to just under a mile and a half in about 20 minutes so I am very proud of how far I have already come and that I haven't had to repeat a week yet. That is a prop to this program, it is for 9 weeks, but you can repeat weeks that challenge you too much until you feel ready to push forward.
I also decided that I really needed to get a handle on what I eat again. But just like the exercise issue of money, I couldn't afford to do Weight Watchers this time around that had worked sooo well for me before. That was when my mom turned me to Spark People. It is this completely free online weight and exercise tracking website. You can track everything you would with Weight Watchers but without spending a dime and I LOVE it. There is amazing support and it really has been working well for D and I over the last three weeks. It has been great for us to do and I have actually seen results even though my body is extremely stubborn right now since just having the baby when it comes to losing a single pound. But luckily I already decided that my main focus is on the running and not the weight because I would have given up already if it were about weight for sure. It took two whole weeks to see any progress AT ALL because I am only two months out from Z's birth and I breastfed until he was a month and a half old. So my body is very resistant to letting go of anything still. Oh well.
All in all, I have three goals with the training. My first goal that I am currently working on is to run a 5k in 30 minutes. My second will be to be able to run a half marathon. My third will be to start working on accomplishing a triathlon. That is my biggest goal and I am most excited about reaching this one because there is swimming involved. I love swimming so much that I actually take Saturdays off from the training to run or the strength training and I just swim. It is a very peaceful experience for me to swim and now I actually have a goal in the pool to reach 3 miles straight just like running. For those of you in the swimming world that is just under 1625 meters per mile (4825 for 3 miles!). My biggest challenge in the pool is that I have always done much better with breast stroke than free, so I will master in breast and then start working on free. All in all, I am working very hard toward something big and exciting that I never believed I could do before. Something in me wants to finally feel like I am the person I always knew I could be. I want to be in a body that is pregnancy free and able to do something else amazing.
Just to keep tabs on my progress, I will check in with what I have accomplished and what I am working on every week. So far I am doing week 3:
Jog 200 yards, walk 200 yards, jog 400 yards, walk 400 yards, and repeat once for a total of 1.36 miles or about 1 1/3 miles. This takes about 20 minutes. See, easy stuff (yeah right! lol). I will post next week on what I am doing. I am so excited! There is a 5k coming up here in Ridgecrest on May 2nd I am going to do no matter where I am in my training because it is a walk/run and I can finish it at a walk if needed.

Guess who's WALKING???!!!

E! It took her about five months longer than the norm, but she is doing awesome and we are so proud of her! She is very bowlegged so it is pretty cute to see her teetering around these days. Unfortunately, she has also learned how to express frustration in a new and loud way. She has learned to scream and yell instead of cry and she does it well and very loudly. Not so cute, but she is speech delayed and it has to be irritating for her to not be able to use words to communicate. I am considering for the first time with one of my kids teaching sign and just continuing it with Z. At least then she won't be screeching at us all the time when she doesn't like something or wants something from us. Our computer is still having emotional problems with the camera, so I will get pictures posted of our walking girl and our other cuties as well once I figure something out.
On a "you have to be kidding me" note, our computer was hacked and our TurboTax information stolen off of it. As those of you who file taxes know, your entire family's social security numbers, address, phone number, full names, and (for direct depositing) bank account information is on your taxes. So, to put it simply, I had A LOT of stuff I had to do to protect us. As a note to try and protect all my friends and family out there, DO NOT use LimeWire for downloads. We made that mistake and it was only by the grace of God that the man who did it had a bought of conscience and called to tell us and turn himself into the police. Please protect yourselves and I send my love!

After Relief Comes Reality

So the relief of a diagnoses has begun to subside and the reality of the diagnoses is beggining to sink in. I pushed and pushed through the last 16 months of E's life to reach the point when all her health issues would make sense and I would be validated. It has happened now and I can say that she has VCFS aka Velo-Cardio-Facial Syndrome and partial DiGeorge Syndrome and it explains intricately every health problem she has ever had. It is a good feeling to know she will be able to get SSI and MediCal and that we will finally qualify for the assistance that we need in order to get her the medical care she needs. But then there is the pain of knowing that your precious child has a chromosomal disorder that is irreversible and permanent. My baby girl is considered "disabled" now and that is hard to adjust to. I mean, she will face challenges for the rest of her life, hopefully less and less as she ages and it will be D and I's responsibility to fight for her in the school systems and the medical realm. With D's job moving us so much, it will be important to fight to be allowed to stay were she is already getting great care.
I think in every situation like ours where there is a true mystery involved in your family member's health condition, you go through the euphoria at the diagnoses at first. You run around meeting all the doctors and you research the diagnoses on the internet until you know more than you should and you are just so relieved that you were right all along and it feels like a massive weight is lifted off of you. Then the reality of what the diagnoses holds starts it's way into sinking in. You have to face what it means for your loved one and for how long and what it will mean in your own life in taking care of them to the best of your ability. Then, in our case, you have to go through a sort of grieving process. Even though E is not dying or severely ill, she is permanently affected by this condition and it will be something that will make her life more challenging in multiple areas. Her development is slower, she speech and hearing is slower and impaired, she will have learning disabilities, she has a tube in her stomach to help her put on weight that will be there for an indefinite amount of time, she has a very high chance of mental illness. Also, all of her own children will have the 50% chance of having the same condition as she does on a much greater scale that could lead to their deaths within weeks of birth or at least heart surgery by weeks to months old. It is scary. Granted, I have been taking care of her without that information for 16 months already and so not much is going to change with the information except more help and less questions. I do however have to get her through these recurring infections and the failure to thrive with D's help and it has been really hard on us. Having a sick child takes a toll on every aspect of family life.
All in all, the relief is quieting down more and more and the depth of what it all means is setting in. We are now facing what it means and what we need to do. Good thing we have our faith in God to get us through because this is what faith exists for. To give you something to trust in and lean on and hope for when you know you have reached the end of your power to control or change things, especially when it is about your beautiful baby. And to think, she has the mildest version of this condition!

ANNOUNCING...

Z!!!

Born on Feb. 6th, 2009
At 12:09 pm
Weighing 7 pounds, 8 ounces
and Measuring 20 1/2 inches

He is WONDERFUL and healthy and I will get pictures out soon!

Update on Life- SERIOUS

Okay, so, I have no idea where to even start...
On Thursday, January 25th, I took E to her pediatrician because she was just not getting over a really nasty sinus infection. When I got there, I told her that I had an appointment scheduled for E at Loma Linda for her GI specialist the next morning. She told me that were it not for that appointment, she would personally hospitalize E, but she wanted her to go to that appointment and would call the doctor herself. Due to her feelings about hospitalizing E and the fact that she would be contacting the specialist, I took D's advice and packed a hospital bag for two of us just in case they admitted her up there at the children's hospital. Well, lucky I did because as soon as we sat down with the specialist, she asked me how far along I was and if there was enough help at home for my older children and I told her we had taken care of it all. She admitted E that evening to Loma Linda Children's Hospital and they started i.v. treatments of antibiotics and started watching her eating and weight and dirty diapers like a hawk. They also started running tons of tests to try to start honing in on what has been creating her eating, weight gaining, and development problems. After a week and a half, they decided to put in a G tube to start doing feedings through the night while she is asleep as a supplementation to her normal eating during the day. That went in today. They also got test results back on her chromosomes and found that she has an abnormal "fish" or chromosome 22 and it means that she has a very mild form of DiGeorge syndrome. I haven't been brave enough to research this disorder yet, but I do know that the doctors already checked to make sure that it hasn't caused heart damage, immune system damage, or calcium deficit and she was in great health on in the heart and calcium areas. They did a swallowing study to make sure she is swallowing well and were able to see why her food has always leaked out of her nose when she eats. There will be more clear information on that in a few weeks when we go back with her as an out-patient to the ENT's (Ear, Nose, and Throat specialists) to run their own tests and get a look. They will be doing a scope to see what is going on in her sinuses and get a better look in her ears. We will also follow up closely with her GI specialist and will be seeing her geneticist. All that and I am having my c-section on THIS Friday. In fact, the only reason I am home now and D is with E is because I had to book it to my OB to get the blood work and pre-admission paperwork done this afternoon. I couldn't put it off any longer and had to take care of this part of things. I will have one full day home before I am in the hospital to have my baby and I am crossing my fingers that D and E will be home by tomorrow night so that D can be there when the baby is born. Otherwise, my mother-in-law will be in the room and D will still be at Loma Linda tending to E. It is a crazy mess, but I am feeling so hopeful now that someone has found a significant key to what has done this to E. Please send TONS of prayers our way as we are all in desperate need of them. They have held us together thus far and I couldn't be more thankful to God than I am right now. God bless.