Trusting the “Alpha & Omega” when the Alpha is missing

When my son was born, he was perfect. Healthy. Beautiful. He had ten tiny fingers and ten tiny toes. He was quiet when he was born, but he cried when he was supposed to. Held my pinky when I placed it in his hand. Looked up at me with those wise eyes. Fed like a champ. He was perfect…And I knew I was blessed to have a healthy child. We had survived labor with almost no complications and I thought we were in the clear. I remember when they did the heel prick in the hospital. You know, the one for the typical newborn screening. It was 1 or 2 o’clock in the morning. He didn’t even cry. Even the nurses were impressed…My fierce little lion…”Thank you” the nurse said cheerfully. “You should get the results back in a few weeks. It normally comes back all ok.” And with that, it didn’t cross my mind again…until a couple weeks later. It started with a phone call. A vague, terrifying phone call. I was told something showed up on the newborn screening, an “abnormality” with his blood. I needed to take him to the specialist. The date was 4 weeks away. They would send me a package of papers to fill out for the specialist..and no they couldn’t confirm what was wrong… There were a thousand blood disorders out there ranging from no problem to deadly and no one would tell me anything…I was devastated. In this moment my heart shattered. I had never felt a fear like this in my entire life. And to make matters worse: I was alone. Well 4 weeks later, after the doctor rescheduling his appointment twice and then me demanding my son to be seen, and still not receiving any answers; I loaded up my son and we drove almost an hour to the specialist. The entire way there I was a nervous wreck, already feeling the sting of tears in my eyes. Pediatric Oncology and Hematology….The name itself shoots fear through my heart…”Good Afternoon”. “Fill out these papers please”. “Sit here”. “Wait here”. More papers. “Sit here, they will draw his blood shortly”. I was numb. I held him tight and put on a brave face. Not the first. And not the last. She called us back, all business. “Sit down in the chair. Hold him in your lap”… Waaaiiittt! I wanted to scream! She was so calm, professional, cold almost. Didn’t she know I was terrified? That not all of us do this everyday? Didn’t she see how tiny he was? Didn’t she know being a new mom is scary enough? A single mom at that!—Of course she couldn’t have known that last part…I sat. I held him. And I braced myself…. I wasn’t prepared. How could you prepare yourself for this? Holding down his tiny arm, no bigger in width than 2 of my fingers. Watching the needle hit his vein. And the worst part? Hearing him scream. I had never heard that immense sound of pain come from him in his short 6 weeks; and if I thought my heart had been shattered previously, that was nothing close. I held him down. He screamed…I kissed his head. He screamed…I fought with every ounce of strength in me to hold back the tears. Still screaming…I cursed his father for not being there. Still screaming…I tried swallowing the lump in my throat so I could speak, but to no avail. He’s still screaming…I pray to God that my baby will be “ok”-whatever that means. More screaming… She finally withdraws the needle. I comfort him, trying to soothe his sobbing…”I didn’t get enough blood the first time” she informs me. “I have to do it again”….So we hold down the other arm. My son, my beautiful 6 week old infant, already screaming because he knows whats coming…

When we finished, we went up to the next floor. Here we sat and waited…and waited…and waited for the doctors to call us back. I’m numb. I’m silent. And so is he…He’s exhausted.

The doctors call us back, ask questions, do the physical exam. Lion baby lets them. He doesn’t cry. He doesn’t move. He just stares off blankly…and I try not to do the same. After what seems like forever, answering the same questions over and over; explaining a million times that no I do not know the paternal side’s family history, he’s not here, and that wasn’t exactly something we talked about…they finally explain the diagnosis.

My son has Alpha Thalassemia Minor. The easiest way for me to explain it here (and skip the half hour of diagrams and explanations from the doctors) is this: Blood is made up of 4 types of globins; the dominant types being Alpha and Beta. My son’s blood is missing some of the alpha-globins. It’s genetic, meaning at least one of his parents passed the gene(s). What are the effects? Well, it’s hard to know exactly at this point. We have another appointment soon to check his levels. However, being that my son has the minor form (and not the severe form), he will not need the more severe forms of treatment (blood transfusions, etc.) In simple terms though, alpha thalassemia affects the hemoglobin and reduces its ability to transport oxygen. The red blood cells are smaller than normal and alpha thalassemia may lead to anemia (not the iron deficient kind).

So where do we go from here? It’s a question I asked myself that day in the hospital and ask myself still. I still do not know what complications this may bring for my son, but what I do know is this: I am still BLESSED. I am blessed because: I am able to hold my child close. He is happy, and honestly healthy. I am blessed because my son carries the MINOR form.

I walked out of the Pediatric Oncology and Hematology floor that day…and as much as my heart ached for my own child, my heart ached for the children and parents sitting in the patient rooms that we passed. They didn’t have the opportunity to walk out of there that day, to get in the car, to drive an hour back home. They didn’t have the “blessing” of being told their child has _________MINOR. I walked out of there holding my child…the thought that some people don’t, tears me to pieces as I write this.

In all we do, there is always a blessing in the storm. No matter what hell we have been through, we can always lean on God and trust his plan…My son may be missing some alpha-globins, but that doesn’t mean anything will hold him back; and we will never stop trusting the “Alpha & Omega”.

-Alanna

❤ ***My son has the minor form of the disease; however there are children and families out there with the major form who are experiencing much worse than we are.The only cure for Alpha Thalassemia is bone marrow transplant. I would really like to encourage everyone to look into becoming a bone marrow donor. For this disease and so many others, you might just save a life.*** ❤

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The Plan for Happily Ever After; and Why I Know It Still Exists

Happily ever after….Don’t we all have those dreams?…You know how when you are in preschool and the teacher asks what you want to be when you grow up?….Sitting in a raggedy old scrapbook, packed away in a box somewhere in a shed at my parent’s house, there is a paper with a hand drawn picture from the four year old me that says “When I grow up I want to be A Mommy”….Just let that sink in a minute; all I ever wanted for my life was to be a Mommy; and truly I have been blessed….

When I found out I was pregnant, it wasn’t a feeling that I could have ever planned for…my whole life this is all I wanted, but the emotion is unexplainable. Almost immediately I was planning out my unborn child’s entire life. Everything from the flawless, no intervention, perfect childbirth with only the father of my child present; to family vacations; family photo shoots; and a plan of parenting that is so very different than the parenting style I have today. But like a tornado that just pops up: unannounced, suddenly, deadly; Four weeks before my son was born, everything flipped, and for a moment (a very, very, long, painful, drawn out moment) I thought that “Happily Ever After” was never going to exist for me or my son.

And for this reason, I want to share what being a single mom taught me about parenting, life and happily ever after…especially for those of you, the new single moms, who feel as though Happily Ever After has been shattered….

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1.) EVERYTHING changes; everything you had ever planned gets thrown out the window…well sort of. The LOVE for your child never changes, don’t forget that ❤ …Everything changes, but that’s okay!

2.) I co-slept. This might not even be such a big change for some, but it was for me. That wasn’t originally the plan we had thought about, but it changed when it was just me. When my child was a newborn, co-sleeping was honestly just easier. As a breastfeeding mama (especially being alone at nights and still in pain from labor), it was so much nicer to just roll over and feed him without having to get up or to allow my son to fully wake up either. Aside from that, I just wanted to be close to my child. I went back to work when my son was 5 weeks old; it was actually an internship…I was determined that nothing would stop me from finishing my degree. So starting at 5 weeks postpartum, I was logging around 50 hours a week!! In the beginning, co-sleeping was also a way to make up for lost time. I hated being away from him during the day and I felt like our night cuddles allowed us to still have that precious time together and closeness. Now, it has become a way of life and I am one of the biggest advocates (I’ll save the rest for another post as this is getting lengthy lol).

3.) I let him watch tv 😳. I swore I wouldn’t let my child watch tv before he was 2 yrs old…aaaaand I did. Originially this was “NEVER” going to happen, but sometimes you have to do what it takes. After a long day of work, coming home to make dinner, and then have to take an online test for school or study; at some points, I gave in for 10 mins…I feel like moms get a lot of flak for this, single or otherwise…believe me, it’s okay!

4.) You can still do FUN things with your child….just in different ways. For some reason I felt like being a single mom would rob my child of opportunities in life…it DOESN’T, believe me, it doesn’t. For starters, you can still go out with your child. Yes, it takes a little more planning, a few extra trips to the car, and some awesome juggling of the baby and bags (at least when they get big they can walk and don’t have a million trillion things to bring along lol); but you CAN do it. Financially, maybe you can’t afford to go on as many trips or pay for admittance into every museum, zoo, or aquarium every weekend, but that doesn’t mean you can’t give your child great learning experiences from home (or even costly activities) you just have to budget differently.

5.) I realized who were my true friends; who was there for me when I was falling apart; who was willing to come visit just because (sometimes even from 100 miles away; thanks AK,RW, and Boo Thang); who accompanied us on fun outings, who texts randomly just to check in; and even some people who I had hardly even spoke with previously and ended up being some of my greatest strongholds when I was hurting and my biggest cheerleaders through my achievements. To all of you, thank you…truly thank you!–Of course there were those who failed us as well, but that was just another great lesson. I learned to cut out those who were unreliable or drained my energy. I learned that my son is the only one I am willing to chase around. I hold no anger against these people, we are just at different times in our lives and experiencing different things…..But for these true friends, I am forever and eternally grateful.

6.) You have to take time for YOURSELF…What? Wait? I’m allowed to do that?!?!?!….This was an especially hard one for me because I did not want to leave my child for anything. I felt that after working and being a full time student, I did not want to waste the time I could be spending with my son. However, I also have realized that after a workout at the gym my mind is clear and I am more energized. This allows me to be refreshed so that I may better focus on my son….Now I feel like moms (especially single moms) get a lot of harsh judgment for taking “me time”. But hey, if you want to go to the gym for an hour? Take a bubble bath? Go to dinner? Go ahead!! The “me time” will allow you to re-energize so that you may better focus on your babies 🙂

7.) I can be HAPPY. Alone. And Single….If love comes along, so be it ❤ But I’m not feeling the need to go chasing after anyone; as mentioned in the friends section, I’m not going to chase anyone. If it takes away from my son, it’s not where I want to be.

8.) Finally…..I am strong. I. AM. STRONG. And I have to be….I didn’t realize this until my son was 6 weeks old. I had to take him to the hematologist. I had been stressing for weeks over this visit, but actually going was one of the worst moments of my life. The most heartbreaking moment thus far as a mother was holding down my newborn’s arm as they stuck a needle in his vein and he screamed. They drew blood from both his arms that day; and… He. Just. Screamed… But as I sat there, holding him down, listening to him scream for me to stop a pain I couldn’t fix, holding back my tears; something inside me held fast and didn’t break down. In that moment, I knew that the strength within me was of great magnitude; not for myself, but for my little lion. We have had some tough moments since that one and I’m sure many more to come, but because I am strong, (with a fierce little lion by my side) I know we will make it through anything.

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❤ If you take nothing else from this article…nothing else from my jumbled mess of thoughts…take this one simple fact: Happily Ever After always, always exists. Maybe it wasn’t exactly what you planned, but does life ever truly go exactly as planned? No matter what, Happily Ever After always, always exists; and nothing (and no one, except yourself) can ever truly rob you from that ❤

With all the love from me and Lion Baby,
-Alanna 💕