What does it mean? What does it feel like? How do you get through?

I apologized if this is disorganized, I was just writing as it popped into my head.

Being a mother is the most wonderful, rewarding, and difficult job that any woman can ever have. It means things like late nights and early mornings, soothing cries, kissing boo boo’s and worry. It means laughs, and smiles, rejoicing with every new thing that they learn, with every milestone, every birthday, every day! Being a mother means so much. Being a mother means being strong, being a teacher, an advocate, a friend, it means always being there, and loving your children unconditionally. Many families have been faced with times when they don’t particularly like their children for many different reasons but they always love them. That is deep inside of us. It is our motherly instinct.

But what does it mean to be the mother of a child with cancer? What does that feel like? How do you fight every day to get through? Donavynn’s diagnosis was a blow to our family. My husband and I had tried so hard for our little man, it just didn’t seem real. It was like a terrible dream, that I kept telling myself I would wake up from eventually. But here it is two years later – and I must still be asleep because the fight rages on everyday. I remember that night. I remember that whole week before and after his diagnosis. I will never forget his pediatrician telling me that I was paranoid and two days later my doctor preparing me for the worst. I’ll never forget that sinking feeling that I felt when we walked in the door and say the answering machine blinking with 5 new messages – because it was then that I knew, my gut had been right. I’ll never forget pacing my house in tears waiting for my husband to get home because I didn’t want to tell him on the phone, and trying to stay calm while on the phone with the doctor while she tried to tell me what we needed to do, and where to go. I remember calling my mother and screaming through my hysteria “I TOLD YOU SO!” I’ll never forget the look on Dave’s face, packing our bags, the drive up while I tried desperately in spite of my sinking feeling to reassure him that our sleeping baby in the back seat was going to be just fine and maybe this was a fluke. You see they didn’t tell us much over the phone other than that his white count was very high and we needed to get to the hospital as soon as possible. That drive and trying to find a parking spot, the walk up to the floor and that ache in my heart as I pushed open the doors that read “pediatric hem/onc” I couldn’t believe we were taking our baby through those doors. I couldn’t believe that our world had been turned upside down in a matter of hours and that that baby we tried so hard and waited so long for could be taken away from us. I remember our nurse explaining what needed to be done first, and listening to him cry as they tried to get an IV into his dehydrated veins. Poke after poke and they kept blowing veins. I remember finally leaving the room because I couldn’t take anymore and going to the bathroom because I thought I was going to be sick. I remember the in turns going over the paperwork, checking his body over and asking question after question about our family history and his health history. I remember that by the time we finally went to bed it was after 4 in the morning and still I couldn’t sleep. I laid in that hospital bed cuddling with my baby and praying to wake up. I finally did fall asleep briefly and I remember waking up to our nurse standing over me and being heart broken when I realized that everything had been real, that my worst nightmare had come true. Just a few months before all that we had donated to St. Jude and my exact words to my husband were “You never know, someday it could be our child” And now it was. I didn’t know what to feel, I wanted to blame someone, I wanted to lash out at someone. I was so angry and hurt and broken. But somehow I held it together. Though I was dying inside I stayed strong outside for every one else. If I felt confident that things would be ok then so would they. At least that was what I told myself. I made my husband stay at the Ronald McDonald house because I refused to leave his side. I wanted to be there for everything and I wanted to know exactly what they were doing and when. Though I felt like that whole week was a daze I remember it so vividly. I was petrified when Dr. Souid explained all the tests that they had done, and the results. You see Donavynn had a few chromosome abnormalities that boggled them briefly. They diagnosed him with ALL but he had signs of Burkitt’s, and he had Monosomy 7 which is usually seen with AML. Because he had an enlarged mediastynum they also suspected T cell ALL instead of the B cell that he was diagnosed with. I remember when they asked me about all the different symptoms like – how long has he had this cough, did he sleep a lot, etc that I felt like a moron for not catching it even sooner. I thought he just had a cold. His initial white count was 60,000 his platelets were 7,000 – critically low. They told us that if we had waited any longer and he had fallen he could have bled to death. Hearing those words killed me but also made me happy that I followed my gut instinct! Everyone thought I was crazy but I knew something was wrong with my baby. I have always and still do have an unbelievable bond with Donavynn – if I suspect something is wrong with him I have never been wrong. This instinct may have very well saved his life and has taught me that when I am a nurse I should always listen to the parents. Donavynn has taught me the true meaning of strength. Through it all he stayed happy. I remember the fear I felt when he went into surgery for his port placement and how he hated anyone touching it because it was so sore. But even after they poked and prodded him constantly he smiled and said thank you. He played in his crib and kept making us smile when it felt like we would never be able to smile again. It has been a long road – the first year was the hardest and sadly we still have a long way to go but he was in remission quickly and we pray every day that he stays that way. I remember when his hair started to fall out… I was afraid to give him a bath because I had heard so many times that it just comes out in clumps when you wash it. I was thankful that he had so much hair that the loss only thinned it out. The complete loss didn’t come until much later when they hit him with the hard doses again. It broke my heart to see how sick he looked and I just had to keep telling myself that he isn’t sick now, he is doing well and the hair will grow back. I remember the day after we moved here they found his clot because we were in the hospital for the fever he had on the plane and his arm swelled up and turned blue. I remember that summer wondering why he kept falling all the time and the fear that zipped through me when he started having seizures. I remember how it tore at me to see that he couldn’t even sit up, stand or talk any louder than a whisper. I feared the worst. We were happy to learn that it was an infection and with time he would heal. He seems to have healed very well, the only signs left are a few motor delays. I remember countless hospital stays for fevers of unknown origin – which turned out to be low counts, and 2 stays for pneumonia. I remember his most recent stay for a blood infection, his first time being able to stay home with an ear infection and the fear that I felt. I remember each and every blood and platelet transfusion and the fear that riddled my body with every bag of blood that he needed to receive. But after he got them I remember the relief that I felt to see the color return to his face or the bruises start to heal. I remember the lovenox injections twice a day for his clot, keppra twice a day for his seizures, 6mp daily, methotrexate weekly and monthly steroid pulses. But before that I remember a month of steroids and the rage he felt from them, blowing up like a balloon and finally wanting to eat again. I remember the Ara-C, Daunarubicin, and 6-TG as well as the other drugs. I remember the febrile reaction (we thought was from a transfusion) and the next time the anaphylactic reaction to the PEG and him being flown to Children’s Mercy and the fear that rung through me with the thought of him being on a helicopter. I remember as they explained how to use the Epi-pen hoping that I would never need to use it, unaware that a few hours later I would be doing just that. I remember how his little face swelled up and his body turned into one giant hive! I remember when his port stopped working and him having to go in to get another one put in, and the fear that I once again felt about him going into surgery. I know the fear of frequent lumbar punctures, and ultrasounds of the heart to make sure that "the red devil" hasn't damaged his heart on top of everything else. I still know the fear that I feel every time I see a new bruise, every time he has to go for treatment, every time that his diagnosis date rolls around. And I know that I will never be the same again. That this fight is and has been hard but that it has changed me for the better. Because through all of this and so much more that we as a family have endured we did it together. The chemo helped his body fight off the daemon with in and we the family helped to keep him happy so that he could fight his hardest. I also remember feeling alone and helpless. Seeing my baby suffer and feeling like no one understood my pain. But then I remember finding others to talk to and crying with them and rejoicing with them over the different things that their child had endured and conquered. I remember crying every time one of our little warriors is called home to decorate God’s garden. I shed those tears for the child lost, for the family who suffers, for the families who are fighting with us and for Donavynn and all that he has to endure everyday. Pumping his little body full of toxic drugs and helping him work through the side effects, cuddling him at night when he is afraid to sleep alone. Wiping tears and cleaning vomit and diarrhea. Enduring fits of roid rage and crying for him because I can’t ease his pain. This is what it feels like to have a child with cancer and so much more. But don’t be fooled, as hard as it is, I am happy, and proud of my little warrior, because though I often ache for the fact that he will never know what it is like to be a normal 2,3,4, or 5 year old I also know that this battle has and will continue to make him stronger and mold him into the wonderful man that he will someday be. He is my inspiration to help others, he is our warrior! And as hard as this battle has been it has made us who we are so we are thankful. God has taught me so much through all this – even though I cursed him out on the day of his diagnosis. I soon felt peace and knew that he would be ok. I remember going to the chapel the night Donavynn was taken in for his seizures. I asked God to give me a sign that things would be ok and as I was leaving the chapel I saw a book that I hadn’t noticed before on a shelf that said “free to families” I picked it up and sat down to read it. The line I read that I will never forget said “Together forever we always shall be because anything less would mean heartache for me” to me that was the sign I had asked for so I kept that book and read it to Donavynn. So I tell you all, don’t pity us, the mothers of special children, offer your love and support, raise awareness and be there to listen. Because “there is no problem that can’t become a blessing and no blessing that can’t become a problem.”