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 : )