You Love Me Right?

Fours years ago April 30th I became a mom. I no longer was just Suzi or a friend, daughter or wife. I was Mommy. Rick placed this tiny little girl in my arms and she looked up at me with her beautiful blue eyes. I don't know if it was the drugs, hormones or just the moment but so many emotions ran through my body. I was happy, joyful, exhausted, afraid, overwhelmed, grateful and in love. I truly could not have guessed the depths of love I could feel for one little person. Three weeks later I sat on the living room floor, holding Maggie in my arms and crying. I was frozen in fear and sure that someway or somehow I was going to hurt her, lose her, kill her or just plain out traumatize her. Rick looked at me and with a concerned voice said, "We can't take her back so we just have to figure it out."

Tonight I remembered these moments as I sat on the floor next to Maggie's bed. I was watching her as she fell asleep and drinking in each moment, facial expression and breath she took. After a couple of minutes, Maggie opened one eye to check if I was still there. Sleepily she took my hand and asked me confidently, "Mommy you really love me don't you?" Yes Maggie I love you with everything in my heart and soul! With a smile I kissed her head and snuggled her one more time. I know in the past 4 years I have made mistakes, done things I wish I could take back and questioned decisions. Even with all that there is one constant I have done right - I have loved her with everything I have.

Tonight I heard someone talk about doing the next right thing today and worrying about tomorrow tomorrow. I sometimes have a hard time following that advice. Fear and anxiety take over. But when I look at that peaceful face sleeping or watch as she giggles and smiles, I know that no matter what all is perfect the way it is. I have to admit something - from the time I can remember I have longed for a little girl. All I dreamed about was having a little girl when I got married and started a family.

When my Dad was passing away, I asked him to pick out the perfect little girl for me when he got to heaven. I often think of that conversation as I watch Maggie play, read or do her gymnastics. In the bottom of my heart, I believe that my Dad listened to every word I said and picked out the "perfect" little girl for me. I know it is true because Maggie brightens my day everyday with her sunshine!

The Best Reminder

The past couple of days, I have had a lot of support and kind words from friends and family. I have felt down and overwhelmed with all the stuff that has happened the past week. Honestly, I am grateful for all the sentiments people have shared but I just couldn't shake the blues.

Even the sweet words that my husband shared didn't shake me out of it. For anyone who knows my husband, sentiment and mush is not really his thing. But seeing me struggle he told me how happy and grateful he is that I am his kids mom. That he thinks they are so awesome b/c of me and all I do. He gave me a big hug and reminded me that he and the kids love me and would be lost without me.

This afternoon I was exhausted and done. I just wanted to lay on the couch and zone out. It had been an off schedule morning. Lunch was late and I paid for it. Maggie was hungry and tired. The consequence was a pretty nasty temper tantrum. It was an end of the rope kind of moment. We needed to settle down and regroup. After quiet time, the kids and I curled up on the couch for a little Dora and Diego.

Maggie was curled up on my legs and Ricky snuggled in my arms. This was my reminder, my pick me up. Here I was with the sweetest two kids ever enjoying a nice quiet moment. Maggie told me, "Mommy I love being with you" and gave me a huge hug. About 5 minutes later Ricky looked up and smiled his beautiful smile. He gave me one of his kisses and told me "Momma Baby". At that moment I realized that this is what it is about even when life feels overwhelming and out of control. These 2 angels continue to remind me that no matter what happens I am blessed. I don't need to worry about the yesterdays and tomorrows, I just need to be present in today.

The Message

Maggie's appointment/x-ray showed that she has a blockage of poop. That is why she is peeing all the time. The doctor prescribed Miralax and we need to watch and make sure she is improving. This has been going on since the 1st of the year so she probably has been blocked since then. We had made the decision, after checking for UTI's, that all the peeing was from anxiety. I have tried every method I could think of to deal with the anxiety and minimize the peeing. To be honest, all her other symptoms of anxiety have decreased or disappeared except this one. And this week it got so much worse.

So now we know it was not anxiety but the blockage. And I feel like the worst mother of the year. How did I miss it? Was there a sign or a symptom that I completely overlooked? Had I burned out and so I just ignored something? Has she been uncomfortable? Could I have fixed it earlier? I felt like crap! The whole week brought me to a point where I couldn't even say I felt stressed. I just felt burnout. I needed a break or a moment where there was no medical concern and no one needed me for anything.

As I was beating myself up and felt like I was about to burst into tears a friend called me. I shared a bit of what was happening with the kids and she listened patiently. She empathized and offered her prayers. Then she said the one thing that made me stop and realize that maybe, just maybe I wasn't such a waste of a mom. My friend commented that even with all of this going on Maggie was such a happy child. She told me that when she sees Maggie every week, her observations is how much warmth and love Maggie has. My friend shared how lucky I am to have a little girl with such a zest for life and a love for God.

What an eye opener!!! Another person reminded me of all the wonderful things about my girl. She reminded of all those qualities that amaze me on a daily basis. Most importantly I realized that even though I am not perfect, I love my kids. More importantly, the things she noticed about Maggie are all the things that I hope people see when they look at my children. Maggie is learning all those things that I feel are important. She is exactly who I want her to be and embodies all that I hope and dream for her.

So I am again reminded that I need to get out of the pigpen and get back my "attitude of gratitude" I have 2 beautiful and amazing kids. I have no need to beat myself up for not meeting "my expectations". I am reminded of the Bruno Mars song - My kids are amazing just the way they are! And of course I go back to the 80's and remember the old song for me - Don't Worry, Be Happy!

X-ray

So my little Maggie May has been having some concerns with potty. She goes A LOT! At first we put it off to anxiety from the medical stuff she went through in December. The last few days it has just gotten progressively worse, actually it has been horrible. She is peeing every 5 minutes and sometimes she is sitting on the potty for 30 minutes at a time. When she sit for a long time on the potty she usually starts crying. It has been breaking my heart and frustrating me at the same time.

After a crazy morning of her going potty every second, I called Dr. Borus (her pediatrician). I explained my situation to the nurse and asked for the doctor to call me. He called within the half hour. Our laid-back doctor was very concerned. He told me it was time to jump on this and leave no stone unturned. He is concerned due to the pidd and wants to make sure we have looked at every option before we decide it is the anxiety. His concern scared the hell out of me.

So tomorrow morning we go to get an x-ray of Maggie's tummy to check for blockages and than we go to Dr. Borus for an exam. After that, if he finds nothing on the blockage front and is still concerned we head off to an urologist. What a fun day!

I am a wreck. I am a worried, nervous Momma who just wants her baby to not have to do one more medical thing. I can deal with the germs and the colds if we don't need to put her through anymore medical procedures. I had Dr. Borus walk me through the x-ray on the phone so I could prepare her. I hate to see the fear in her eyes when she thinks about going to the doctor. My stomach turns and my heart breaks every time I think this kid may have to go through another "thing".

Maggie is strong and she is a trooper. But she is also 3 and scared to death of anything medical. I just want to hold her and make it all go away. If I could I would wave a magic wand over her and she would be perfectly fine and healthy I would dance with joy. The truth is I can't so I have to do the next right thing. I will be saying lots of prayers tonight and tomorrow. I will visualize placing her in God's loving and protective hands. And I will hug and kiss her more times than anyone can count.

Siblings

I don't have much to post tonight. Today was not a bad day but not a good day. It lay somewhere in the middle. My migraine was still going strong until about 9 pm and so that seemed to handicap me and my attitude through most of the day. Maggie's ears were not working well so that seemed to frustrate me through most of the day. Rick was stressing over school and in and out most of the day. And poor Ricks didn't get his nap b/c he had to go with us to gymnastics and did not feel 100% himself today.

Even with all of that we did have some good moments of reading books and learning new words. The kids and I enjoyed a giggle-filled breakfast and some fun playtime in the morning. Maggie pretended to be a bear who was hibernating. She would wake up and chase her brother b/c he was a little boy who was playing in her woods. They would run around the playroom and fall down laughing. I love watching them together. They are as thick as thieves and love each other with amazing loyalty and joy. Yesterday as we walked out of Dr. T's office, Maggie took Ricky's hand and told him to follow her. He happily walked beside her and when I tried to take his other hand he pulled it away. "No Momma," he told me. The walked hand in hand until they reached the elevator.

My sister-in-law, whose kids are the same age difference, told me that it is a wonderful age gap. She said that in time they would become best friends and play with each other. Thus keep them busy and out of my hair. This has come true in the past couple of months. I actually had a moment the other day where I tried to enter the game and they were so busy they ignored me. I watched as they interacted and played together. And I felt blessed for 2 such great babies.

Maggie loves to read to her brother. Ricky looks for her when she leaves the room. They love to laugh and giggle during meals. Sure they have there random fights and battles but mostly they just enjoy and love each other. Maggie has told me that when she was a little baby she asked God for a Ricky. Many thanks that God listened to her request and they have each other!

The Numbers

Today I took Ricky to Dr. T b/c he was under the weather. Dr. T's diagnosis was another virus with a wonderful viral rash which broke out all over his torso this morning. So we continue on Biaxin until Friday and return to Dr T next Thur. First he had a virus, than a couple infections and now we are full circle at another virus. When will it end?

Excuse me if I don't make sense but I have a massive migraine tonight. While we were at Dr. T's we reviewed Ricky's latest immune numbers. The blood work was definitely full of surprises. The IgA info had not really changed. Ricky has a minuscule amount of IgA which does nothing. Basically, we should just say it is 0 b/c it is so small. Then there is the IgG. Now when we first tested him, his IgG was off a bit but Dr T did not think it was anything to worry about. He was young (approx 17 months) so he wanted to give his immune system time to mature. Today we found out that those numbers took a nose dive. His IgG numbers are significantly off and that is not good news.

To explain a bit more - both kids are missing there IgA antibodies. And now both have the right amount of IgG but they are not functioning properly. The analogy I like is all the parts of the machine are there but it just is not working right. So the bottom line is that Maggie and Ricky have one major part of their immune system missing and another not working.

So what do we do about this issue you ask? We re-immunize! Maggie was re-immunized once and most likely it will have to be done again. Ricky's pediatrician will do it so all shots are done in one appointment. Then we wait 3 weeks and do more blood work. If Dr T sees no improvement we re-immunize again, wait 3 weeks and blood work. If it is not working and Ricky is still getting sick we reconvene to discuss options. One option is prophylactic antibiotics which he would take as a precaution every day. All overwhelming so we will stick with just doing the 1st round of the re-immunizations. We are also doing blood work that could possible put us into a new diagnosis (Maggie will do hers her next blood work).

I am disappointed, disheartened, overwhelmed and exhausted. Once this migraine is gone and I have gotten some sleep I will be better able to process the info. For now I just say a prayer, kiss my babies, have confidence in Dr T and faith in God.

My Shoes

I just finished a conversation with someone who does not have children who suffer from chronic conditions. This person had a lot of wisdom and ideas about the best way to handle the situations and many opinions about the choices Rick and I have made. The person belittled my fears/anxieties and reminded me I needed to let it go. I am making a mountain out of a molehill. In this person's opinion my drama card is in full play and I am just working to be the center of attention.

I have an anger in my soul about this whole idea/conversation. The sad thing is that this person is not the only one in our lives who has reacted or feels this way. I am told that on the outside my kids look happy and healthy so what I am jabbering on about. But the truth is I work darn hard to keep balance. Rick and I make it a priority to do everything possible so they are happy and healthy. It doesn't happen just by chance. And honestly, we feel blessed that they are as happy and healthy as they are.

You see in my opinion, people who do not have a child who has been seriously ill, or taking it one step further, is not chronically ill, have no idea what this life is about. They cannot begin to understand the anxieties, fears, exhaustion, joy, happiness and plain out gratitude that comes with the territory. The have not had to watch as one of their babies screamed and cried as an IV was stuck in their arm. No doctor has every explained to them that when their 3 year old gets sick again (and the odds are she will get very sick again), he doesn't have many choices for antibiotics. Matter of fact, he is not sure what he will do. They have not sat, after putting their 23 month old to bed, wondering if when they go to the doctor in the am AGAIN if he will tell us the same thing.

As a parent, we love our children with everything we have. When both of my babies were placed in my arms I had dreams and hopes for them. Nowhere in those dreams were Selective IgA Deficiency, asthma or an allergy to penicillin. I never thought of a doctor telling me to "expect" them to be sick at least 3 times a month and celebrating when they were not. I don't know what the future holds for either or them but you can bet they both will make their marks on the world.

I love my children and do the best I can by them everyday. I make mistakes and fall along the way (as we all do). I try to give them roots and wings. I teach them about God and faith. I give them limits and love. I try to teach them life as a zebra and hope to help them overcome any obstacles they run into (including people). And I work to remember a very important mantra - IT IS NONE OF MY BUSINESS WHAT PEOPLE THINK OF ME! Now if they would just keep it to themselves : )

Yellow Still

Maggie has a new way of labeling how she feels from her therapeutic play kit. A green band aid means healthy, a yellow means a little bit sick and a red band aid means real sick. She constantly reminds us that she is a green band aid. Ricky has been working towards that green band aid since he was sick with a virus in mid January. I thought we were almost there and then BAM!

The past couple of days he seemed to be getting stuffy and was VERY cranky. He was laying his head down on his Bear a lot during play and just seemed to slow his activity. His appetite decreased but at the same time he is drooling and chewing on everything. So I determined he was probably getting in his 2 year molars. It was nothing major to worry about but some teething pain.

Today he woke from his nap an hour earlier than usual. We usually have to wake him at 3 and he woke up himself at 2. I was taking Maggie to the doctor for her tp/nose checkup but Daddy said he was very cranky when he woke up. When I gave him a hello kiss I could tell he was very warm. I took his temperature and he had a slight fever. So here we go again with a trip to the doctor to see what is going on. When I think about it my stomach knots and I want to cry.

Why can't we beat this bug? What is the deal here and what will it finally take to get him to 100%? Is there really something wrong or are is teeth the cause? I give teething credit for the crabbiness and other symptoms but the fever? Will we have to switch antibiotics? Are we running out of choices? Will Ricky need a ct scan?

I know I shouldn't get into the "whatifs". I should just stay in the present. I realize I have to hand it over to God and have the faith that it will all happen as it is supposed to. I will pray and do my meditation. In my mind I will hand Ricky over to God's hands. All is as it should be. FAITH!

That is true but when it is your baby it can be so hard. I want to hold him until he feels better. I want to hug him and squeeze all those germs out. I want to kiss him and make it so he doesn't need anymore antibiotics or tests. I want to take all the pain, illness and hard stuff away and replace it with love and laughter. I want to make it all better.

But I can't so I have to rely on God and faith. I have to hold on to the fact that God has it under control and no matter what happens tomorrow, we are okay. God may not take away the infection or the treatments but He is with us. He will hold Ricky in his hands and kiss him on the forehead with His love. He will walk with me and when needed he will carry me. When the kids have to go through uncomfortable stuff God will provide me with the strength and wisdom to do the next right thing.

The true question in my heart and soul tonight - why is it feel so hard?

TP

I don't have much energy tonight. It has been a very long day and I am ready for bed. I woke up cranky and it just went down hill from there. Maggie had her own plans for today and her listening ears were not working very well. Rick and I had some communication mishaps and I just wanted to curl up at quiet time and zone.

But that did not happen b/c at approximately 2pm I heard Maggie start to scream and cry. I raced upstairs to find her opening her door in tears. "Mommy I have toilet paper stuck up my nose" she tells me. I try to take a look but can't see a thing. I explain we need to go downstairs and see if Daddy can see anything. She freaks out and begins to fight me physically. I don't even think she realized she was kicking me and tried to bite my hand. Fear had hit her b/c she knew this probably was going to be a trip to a doctor.

I called for Rick as Maggie went into full panic mode with screaming and crying. Rick's response was a quick look and a concern that he will never get his studying done for his test on Tuesday. His wisdom was he probably should just drop his class. Instead of responding by screaming and my head spinning, I grabbed the phone and dialed the pediatrician. I actually had to wait for a person who informs me that the c/b time is 90 minutes. Maggie is continuing to scream that is uncomfortable and will not keep her fingers out of her nose. I decide we are going to go to the ER/Urgent Care. Neither of these places are good spots for a child with pidd. They are just a wealth of germs all searching for a new home.

I call the closest Urgent Care and they tell me they can handle toilet paper in the nose of a 3 year old. I take her there and ask at the desk. Again they tell me they can handle the situation. So we wait an hour and I keep Maggie busy with word games and spelling. Finally we get in to see the doctor. The nurse taking Maggie stats seems to have never heard of pidd and that concerns me. Oh well, we are here for tp in nose and not illness. She leaves and another nurse comes in to inform me they don't handle these situations. I start seeing smoke but keep my cool. I explain I called and was told they did. I asked before I waited and was told they did and now..... She gets the doctor who agrees to try.

The doctor sees the tp and says it is pretty far up. He needs Maggie to settle down so he can go in and get it. She says she has to pee (she has already peed 4 times in 30 minutes due to nerves). Maggie is screaming she is going to wet her pants and thrashing around as she has a death grip on my neck. She accidentally kicks the doctor and he says we need to go the the ER. Secretly I am glad she got a kick in b/c I am pretty pissed at the whole darn Urgent Care. But we leave.

In the meantime, the pediatrician's office calls back and says just try saline solution and bring her in tomorrow. So we come home and I keep pushing the saline. It takes a couple of hours and lots of tears but we get it. That paper was the size of a quarter! I still can't fathom why Maggie wanted to stick it up there. Her explanation was pretty simple, "I wanted to see how it felt and it was uncomfortable but soft and squishy" Well alrighty then!

I have made her promise no more tp, or any other item, in her nose. I am more than a bit nervous about any medical intervention she made need in the future b/c of her reaction to this situation. I have concerns about Urgent Cares. But mostly I am tired and need a night of rest to find the humor in this day. I am sure tomorrow I will have a good laugh after we see the doctor and get the all clear. And someday when it will most embarrass her I will share the story of how Maggie stuck toilet paper up her nose during quiet time.

Sniffles

I thoroughly enjoyed the wonderful weather of the last few days. Unfortunately it brought an early bloom to our allergies. Poor Maggie's eyes were watering and itching this morning. We learned last year that she has allergies to trees and some grasses. Of course her worst tree allergy is to maple which surround us. The allergies, I think, was made worse by her sinus infection or was it vice a versa. Either way, it was a long spring full of doctor visits and asthma flares.

I also have spring allergies. Today the sneezing was in full swing and I had that allergy fatigue. I am not sure exactly what I am allergic to but I know that as I get older the allergies get worse. So today I took the first Claritin of the season.

I love opening the windows and the house smelling like fresh spring air. That will not be happening again this year. I opened them up the past few days and I think that made the allergies worse. So we are starting allergy protocol to try and hold off its annoyances. Plus, I say a prayer that the allergies don't irritate the sinuses to much and create an infection. And then there is the asthma. I pray that we have it stabilized enough that we have no flares or concerns.

Finally, I gave Maggie a dose of 24 antihistamine this morning. It helped her eyes and sneezes but it also made her groggy and a bit whiney. She actually fell asleep at quiet time. That is an odd happening here unless she is sick. I can't remember the last time she slept during quiet time. I just hope the hour nap doesn't push bedtime until late. Actually, I hope she doesn't need it everyday to cope.

So I guess my dream is spring hurries by and we settle into a nice, warm and relaxing summer. Our allergies should have diminished and hopefully the kids are healthy. Then we can focus on lazy days in the backyard : )

Fresh Air

The past few days have been glorious! The kids and I have gotten out for a significant amount of time each day. They have played, explored the yard and gotten very muddy. Our days have flown by and I feel like we all have been re-energized. I have also opened all the windows I can to air out the nasty air from the past few months. I suppose I feel reborn with the springlike air/weather!

One of the reasons it makes me feel uplifted is I always think that the fresh air cleans out all the nasty germs that have taken up residence in our house and bodies. I was so glad to bundle them up and send them out. I hoped that every time they breathed in the fresh air , they breathed out some of the stale, germy air in their lungs. And it is always better for them to be active and that is why I think they are healthier in the summer. The other item is I believe the joy and excitement they experience while jumping in a mud puddle or throwing a ball into the air affects their health. The happier and less stressed, the better their immune systems seems to work. So bring on the outdoor play and the stress-free summer mode!

I know we have not really hit spring yet and winter will wallop us at least one more time. It happens every year like some wicked joker. This taste of what is to come has at least lightened the mood and given me hope. I was starting to feel claustrophobic beneath all the white snow. The freezing temperatures were strangling me and the gray skies depressing me. It was time for a reminder of what it to come.

BRING ON THE SUMMER DAYS OF 8O DEGREES AND SUN. I can't wait to hang out in the backyard with the pool filled and the kids running barefoot. The thought of snack on the deck and dinners on the grill just hypnotize me. And the best memory - children just out of a bath who drop into their beds sound asleep from complete exhaustion. Summer don't be late : )

My Husband

I was out to dinner tonight with a bunch of my girlfriends. One woman shared about how she struggles with finding "Mr. Right". I was reminded of my life approx 9 years ago before I met Rick. I was sad, lonely and felt that no one would ever love me. At least not love me warts and all. Who could love a person with my baggage and craziness?

Then one night I met Rick. I remember we were bowling with some friends and he was so quiet and polite. Rick was nothing like any guy I had ever been attracted to . You see I always liked the guy who had a subscription to GQ and loved sports. Rick was none of the above. We hung out with these friends and soon we became friends. We met in approximately February and by May I knew I loved him. More importantly, I knew I wanted to spend the rest of my life with him. So the hunt began....

It took me a year or so and a breakup but in July of 2004 we got engaged. We were married in 2005 and started a family right away. So here we are in February 2011 with our 2 angels. I would love to say all is perfect and harmonious but life happens. All in all, things are strong and good. Rick is my true love, best friend and the best Dad I could have hoped for my kids.

Rick is the rock solid one in the relationship. He grounds me and is the voice of reason. He has taught me better budgeting and is the "money" mind around here. He is funny in his own straight man way. He works hard to make sure we have all we need and most of what we want. Rick is an active part of the kids life, He plays with them, changes diapers, read stories and makes meals.

There is so much to say and it would take many paragraphs to write it all down. Our life is "life on life's terms" There are good days and bad. We cycle through issues and fight our way to a stronger place. We parent together and make decisions. The one truth I know is that no matter what happens he is in this forever. He loves me in a way I never thought possible - warts and all. If anyone has seen my darkest side it is him and he has never walked a way. For all of this and more I love him with my complete heart and soul. I would be lost without his friendship and love. On this journey, he is the only partner I want. I am so grateful that God has put him in my life to share our joy, pain and love. He is my soulmate!

Extraordinary

Tonight I read an article by a woman named Heather Lende. She talked about finding the extraordinary in the ordinary. I loved this statement! It truly inspires me. I have found that on an average, ordinary day it can be very busy around here. Rick has school and has to study. One of the kids is sick or has an appointment. Maggie has school or Ricky is tearing up the house. Life happens and the day gets by us. There are some days it hits bedtime and I wonder where the day has gone. Although I usually feel accomplished on those days I sometimes wonder what I have missed along the way.

Today held one of those moments that was extraordinary. After living through the winter from hell, the weather finally gave us a gift. The temperature was mid-50's and the sun was shining. Now there is still a significant amount of snow and ice on the ground even though it felt like spring had sprung. Even with the snow mounds, Maggie and I decided we needed to enjoy the fresh air and we were bringing Ricks along for the ride. They put on boots and out we went. It was wet and muddy but the kids loved getting to run around. They explored the snow and shoveled it from here to there. There was a lot of puddle jumping and Ricks even decided he would try sitting down in the middle of one. That extraordinary moment came when Ricky and Maggie were jumping in a puddle and making "snow soup". The sun was shining and they were laughing. I felt a peace come over me and a happiness so huge fill my heart. This moment was what life, to me, is all about.

I have many a bad day or moment. I don't always have the perspective that looks for the silver lining. Some days it is a fight to see the positive. But what a blessing are the days I notice the small miracles and extraordinary moments. It is those memories that keep me going on the gray days. It is those memories that strengthen my "life line" to God. And it those memories that remind me that I am right where I need to be!

The Conference

To go or not to go that is the question! Anxiety is rearing its ugly head and I am about to back down and back out. It would be a great resource and I would probably get amazing information. I would meet others who have pid and get a chance to learn more about this chronic condition. The info would probably be extremely helpful for Maggie and Ricky. I might even benefit from a few days on my own. A respite and vacation. I could learn about myself and explore who I am away from being Mom.

But........I would be gone Thur morning thru Sunday morning. I would miss my kids and husband horribly. The nights would be hard b/c I would be wishing I was here with them instead of in a hotel room. I already have travel anxiety and the thought of going alone terrifies me. Add in the social anxiety and it just freezes my soul. I am not good at going into situations where I don't know anyone and being comfortable. I usually shut down and end up sitting quietly(and miserably) by myself. I hate that!

So the question is still out there on if I go in June or not. Rick and I have some financial/budget things to decide on so I still have time to freak about it. In all honesty this is one I need to hand over and let God lead the way. Cause if I do I will probably hide from the fear b/c it is easier not necessarily the next right thing. And if I can let it go what is supposed to happen will.

Perfection on Life's Terms

Happy Valentine's 2011!!! Today started as any normal Monday - the Richter family racing around trying to get Maggie and Rick off to school. But today we added in getting Ricky ready to go to a babysitter while I got ready to go to Maggie's Valentine party at school. In other words, a tiny bit of chaos. So I finally get the kids in the car and we are on our way. The cell phone rings and Rick can't find his keys. I turn around to give him my extra key and wonder what I could have done with his keys when I used them last night. This makes us a few minutes late but Maggie handles it all well and reassures me that we will find the keys. I get her to school and make it home to round up Ricky's stuff to take him to the babysitter. I do a quick key hunt and nothing. In the end I race out the door and forget at least 2 things. I get Ricky settled and head down to the party.

The party was fun and Maggie loved that her Mommy read a story to her class. We found the keys on the basement floor. Rick had grabbed them, dropped them on the floor and forgot he had done any of it. And the rest of the day was spent just enjoying each other. I made Valentine cookies with Maggie for dessert (to add to her already full cup of sugar she had consumed). We played and cuddled and just plain giggled. And to end the day, we all cuddled up on the couch for the last Dora of the day. Ricky curled up in my lap and Maggie settled in with Rick while holding my hand. As I looked at my family, I thought this is what Valentine's day is really about - love. Forget the candy, cards and gifts that soon get forgotten. It is about the love and the memories. It is about spending the time to just sit quietly and hold someone's hand. It is about the kisses and hugs from my kids. And it is about the husband, who through thick and thin, is my best friend and love of my life. This has been the best Valentine's Day yet!

Love

On the eve of Valentine's Day I am blessed with the 3 best valentines. Many years I was depressed b/c I had no one. I used to wish for flowers, candy or a card. This year my Valentine wish list is pretty simple: lots of hugs and kisses from my 2 huggable sweathearts and some quiet time to cuddle up with my husband and best friend. I don't need a material gift to prove how much any of them love me. I just need to see 3 smiling faces and hear the chatter and laughs as we spend time together.

Oh and one more thing I would LOVE for Valentine's Day this year - 2 healthy kids who have need to go to the doctor. That would make the day perfect : )

HAPPY VALENTINE'S DAY 2011!!!!

Lean on Me

The past year has been quite a journey starting with Ricky's egg allergy diagnosis and continuing today with yet another round of antibiotics to treat his sinus infection. Rick and I have been up and down and all around during these changes. It has changed each of us, our relationship and how we parent our children. At times it has been a very lonely spot as the Mom of pid kid. No one understands quite what it is about and most people wonder why your kid is sick all the time. But there are angels and true friends that have been there even for just a quick moment.

I guess I thought of this post b/c I ran into someone today who asked me about all my facebook statuses where my kids were sick. I explained about their immune deficiencies and what is going on. "What do you do? How do you do it?" she asked. My answer without much thought, "A lot of prayers, strong faith, patience and good friends." And that is pretty much as true as it gets in my life. I am so grateful for the people who love us and support us, even when they don't understand. It is nice to know that whatever craziness pid brings, we have people who are there to help. It has been a life-saver to just get a message from a friend asking how the kids and more importantly, I am doing.

It is times like these where you realize who your true friends are and what friendship really means. So many people who were in our lives a year ago have drifted off and the relationship fizzled. They got bored, tired of hearing about sickness or just felt it was drama. Some didn't have the time to invest or the listen. And there were a few, family and friends, who felt it was overblown or not that important. To be fair and honest, I have made some assumptions but for some I have it right on the nose.

Those are the negatives and some have left my heart a bit broken. On the flip side, the positives have saved my sanity and soothed my fears. They have helped me to keep walking and given me the strength to be strong for the kids when all I wanted to do was fall apart. It is the friend who calls to check in, the person who sends an email to remind me she is praying, the family member/friends who are so careful and conscience of all our medical ins and outs. It is the friend who always makes something special for my egg allergic Little Man or the aunt who asks what he can or cannot have before offering anything. It is the girlfriends who go to dinner with me or the ladies I have met in my online group. All of these people do so much to soothe the exhaustion and offer hope.

I don't say it often or enough but I love each and everyone of them. Even the people who are acquaintances or new pals. There is a special place in my heart for anyone who has shown kindness, love or support. Without you we would not be doing as well today as we are and our journey would have been much rougher along the way.

Just a Piece

I have had some interactions with fellow zebra Moms today that has made me really think about how I view my children. Since the day Maggie was diagnosed I have wanted from the bottom of my soul to parent them so they will be as well-rounded, "normal" and sane as possible. I wanted to give both Maggie and Ricky a chance to be more than just "a sick kid with pid". They both have Selective IgA Deficiency but it is only a part of them, it does not define them.

I was mulling this over as I watched them play today. It made me smile to see them dancing and jumping. They are both happy kids with ready smiles. So far, I feel we have given them the stability and love to walk along this journey. And were we or they have struggled, we have reached out for help. But I began to smile as I watched them and mused over who they are.

I want to share some of my thoughts:

Maggie is my strong, determined and independent one. She is the consummate first born. A perfectionist always striving to be the best at everything she does. I have realized lately that she has quite the competitive streak. Maggie was the baby who decided she didn't want the bottle or it was time to pee-pee in the potty. Many times I just followed her lead. She knows what she wants and she goes right for it.

But for all her strength, she has a huge and soft heart. She loves her little brother fiercely and always is looking out for him. Maggie readily shares and never wants any of her friends to be sad. She is my cuddler and loves to give out the hugs and kisses. She is a talker and very smart. She is observant and creative. Maggie is my sunshine.

Ricky is my breath of fresh air. He is silly and loves to smile. Ricky is a Momma's Boy and revels in the role. He loves to cuddle up with me and watch a good Dora. Yes he is the couch potato who would rather watch Dora than go out and play in the snow. He is a summer kid who loves running around in the grass with his shoes off. He belly laughs frequently and talks non-stop.

Ricky has a quick temper but it lasts only a second. His best friends are Bear and his big sister. Ricky thinks Maggie walks on water. He cries when she goes to school and screams with excitement when she comes home. He can tear apart a room and get into trouble faster then I can say boo. He takes things apart to figure out how they work on a daily basis. Ricky is the child who will give me a heart attack jumping off the couch or dive bombing down the stairs. He is all boy thru to the heart. Ricky is my laughter.

You see each one of my kids has a special place in my heart and soul. I love them both with everything I have but I love them differently. And the important thing to remember is that I love them not as a pid child but as a child who happens to have pid. They are the greatest blessings God has ever shared with me. All I ever truly wanted to be was a Mom and at times I thought it was not meant to be. But then these 2 angels entered my life and it was complete. You see no matter what happens in the future, it will all be as it is supposed to be. And it will be wonderful b/c I get the honor of being Maggie and Ricky's Momma.

The Pit

My mind has been whirring all afternoon and that pit is back in my stomach. You see I heard the two words that cause utter fear in my heart - sinus infection. This time it is Ricky who is the sick one. He has had a couple minor infections in the past year and it has taken him 6 weeks but he has gotten better. So why feel so anxious and fearful?

I suppose there are many reasons that I have had a lump in my throat and a ball of anxiety in my stomach since Ricky's appointment. One is that I hate when my kids have any infection. Number two is that he has been diagnosed with a penicillin allergy which limits our choices of treatment. Number three is we have been down this road with his sister and it sucked, Maggie started with a fever due to a viral infection in October of 2009, had another one in spring of 2010 and ended in May on IV antibiotics to kill the sinus germs that just wouldn't die.

The biggest player here is Mother's intuition. I just know that what is going on in those sinuses is nasty and feel it is going to take a big push to move those germs out. I have no ct scan or medical license. All I have is Mom knowledge, my heart and knowledge all about my Little Man.

Where does that leave me and my fears? Well the blog is named Faith and the IgA so that should give a clue. It leaves me on my knees praying for strength and wisdom whatever may happen. It is praying for the strength to let not only the infection fear go but to hand Ricky over to God. I visual placing him in God's hands. And I have to step back and take a breath. I have faith that whatever happens, God will hold him and love him through each moment. And as his Momma, I need to follow the doctor's orders, nurture him and love him.

It is normal as a Mom to have fears and anxieties when it comes to medical issues. The greatest gift I can give them is safety and stability. And the only way to do that is with God at my side.

Decisions, Decisions

The hardest part of being the PID Mom is knowing when to pull the trigger and make the doctor's appointment. Sure it is easy when one of the kids has a high fever or is obviously really sick. That is the obvious time to go to see Dr. T. But then there are the times when the gray area shows through and the decision is not so clear cut.

Take Ricky and this virus. It was obvious a couple of Saturday's ago that he was very sick. The fever, lethargy and plain out heart rate/breathing concerns. We did the ER and got the diagnosis of a fever caused by a virus. Then came the rash and so off to Dr. T we went. Now it is 2 weeks later and he is still stuffy, running low temps with random fevers popping up and some crazy breathing today. He also has been stopping his play to lay down on his Bear and take a rest. It is all slightly familiar to some of the things his older sister went through. Even Grandma noticed he is not quite himself today.

Rick and I both have noted some various symptoms. After a powwow this morning I decided it was time to go in and get him checked. I have been going between it being the virus and just plain 2 year molars coming in. See if he did not have pid I would just let it play out and go with the molars. The reality is that he does have pid and that means we need to check under every rock to make sure there is nothing more. So my concerns that he is developing a sinus infection or his asthma is a bit out of control are not just an overanxious Mother. They are legit concerns for the Momma of a Zebra.

*FYI for anyone - PID patients are known as zebras. It comes from doctors being taught in medical school "when you hear hoof beats, think horses, not zebras". And with a pid patient, a doctor really needs to think ZEBRA. But that is another post all together.

Let Them Be Little

Okay I was driving home this morning after dropping Maggie off at school. I heard this song called, "Let Them Be Little" that one of Maggie's teachers gave me a couple of years ago. In the song it talks about just letting your children be young and do all the things little ones do before they grow up. In the middle of the song I started to cry. It was an out-of-the-blue, tear-dropping cry. All I could feel with this sadness in heart and soul. I had been fine all morning, actually it had been a pretty stress-free start to the day. What was this all about?

So I said a prayer, cried my tears and continued home. Then it occurred to me why this sudden sadness at a song I have listened to many times before. I feel like it sometimes is a struggle for my kids just to be "little". There is always one more doctor appt, one more IV or blood test or just feeling plain sick. A 3 year old should not have a a complete knowledge of how to get an IV or struggle with the fear. A 22 month old should not be on his 2nd round of blood tests to check all his "numbers".

It breaks my heart that my babies can't just be 3 or 22 months without having to also go through obstacles other "healthy" children don't have to. They must walk a journey that is going to sometimes cause them not to be normal or to know far to much about what is happening in their bodies. There will be scary moments for them and for me. I am guessing a lot of tears will be shed and hugs needed as we face each medical crisis.

There is a silver lining in this journey. I have learned so much about myself, parenting and my kids the past few months. I have faced fears, practiced gratitude and trusted in my faith. I have handed to God the most precious blessings he has ever given me. And He has cared for them and carried me every inch of the way. I have realized that sweating the small stuff is so exhausting. It is not important if my house is clean, we have participated in all the "right" activities, the kids have "behaved" properly or honestly, what people think of the choices I make. I just have to do the next right thing and what is right for my family.

I have learned far to much to share in one entry. I will share one of the most important lessons. Be kind to myself - esp as a Mom. I love my children with all of my heart and soul. I keep them safe and work hard to make our house a home. I do the best I can and have faith that God is with me every step of the way. I am so grateful there is an entity stronger and wiser who can help, hold and love both me and my family.

Ricky

So after all the craziness of Maggie, we learned that Selective IgA is genetic. We had to test Ricky to see if he to was IgA deficient. The results showed that, like Maggie, he to had Selective Iga. But unlike his big sister, he had a minimal amount and was young enough that maybe it could improve. So in the short time span of a couple months I had 2 children with a primary immune deficiency and a lot to learn. Overwhelming and scared are understatements for what I was feeling. And I felt very alone. As much as people tried to help or understand, they just couldn't get it. I struggled to read up and understand the ins and outs. And trying to explain what I was trying hard to absorb felt exhausting.

There are all kinds of numbers and questions on IgA's and IgG's but in the end my babies will have to face obstacles others won't. We have become zealous about handwashing. And try to steer as clear of germs as possible (almost impossible). But in the end I have 2 gorgeous, strong and amazing kids. I know in my heart and soul that they are in God's Hands and no matter what this journey brings - it will all be okay.

Our Beginnings

So I am horrible at this blogging thing. I start and life happens so it falls in the cracks never to be heard from again. I have tried on a couple subjects and find that after a month or so I just get to busy to write. But as I sit here watching the Super Bowl, I have an itch to document the journey we have been on for the past year or so.

It all started with food allergies. I was diagnosed with a huge list in the summer of 2009. Then there was Ricky's egg allergy diagnosis in January of 2010. I thought it was the end of the world. How could I do this? How could I keep him safe? It was definitely overwhelming. I got on the internet and bought some cookbooks determined to figure it all out.

And then the shoes kept dropping. Maggie had been sick non-stop since October. If it wasn't a cold, it was croup or a high fever (which they originally thought was swine flu but we figured out it wasn't) Rick and I knew something was wrong but the doctors, esp her pediatrician, weren't interested in listening.

In March I took here to the allergist and she was diagnosed with asthma. Maybe this was it and now she would start getting better. We were wrong and soon enough I was sitting in an ER at 3 in the morning with a 3 year old who had a high fever. The doctor gave us the diagnosis (pneumonia) and an extra bonus that Maggie's white blood count was three times higher than a sick child. WHAT????!!!!!!????

The end of the story was at her appointment with the allergist/immunologist we FINALLY got our answer. Maggie had a massive sinus infection and she spent over 5 days on IV antibiotics. But we learned what lay underneath all of the illness and craziness. Maggie had a primary immune deficiency called Selective IgA Deficiency.

Relief, sadness, fear, confusion, anger, gratitude are only the name of a few feelings that went through me at the moment of her diagnosis. And I have gone through so many more the past 9 months or so. I hope to share all that has happened and all that is yet to occur. If I remember to log on!