When Its Time To Check Yourself

After a week away at my parents and understanding from my mom, I realized it was time to actually put that month of me in place this month. Since first deciding Seraphina needed to be evaluated and eventually diagnosed with ASD, I truly have been in head down kid mode and taking care of myself went out the window. I didn't really write what I was feeling in the last blog and to be honest, I still can't really put it all into words.

After four amazingly healthy children, I was blessed with my surprise angel, Seraphina. She was named for my cousin Clare who passed nearly four years ago and with her passing so much more than a life was lost. Clare brought healing for me in my adoption and there was a connection I felt with her that I had never felt before in a child from the moment I met her. Seraphina was not anticipated but she was wanted.

When Seraphina was little she was "the best baby". People commented how peaceful and passive she was. I believed this was Clare coming through in her namesake, Seraphina MaryClare. Shortly after her 15 month birthday I took her in for her well child check. She was healthy and so we administered the typical vaccines, including the MMR. In my heart as we drove to the doctor that day I hesitated but had no idea why. As we drove home my son commented on her big bumps. Big bumps? Arriving home I took her out of her seat and noted HUGE welt on the site of the injection. Frantically I called the pediatrician who told me to watch it. I did and it spread. By the time my husband arrived home it was up her body, on her face and covering her eyes. I called again and they told me to use Benadryl. Frantically I tried to figure out how much to give her without overdosing her and plopped her in the tub in a bath. I knew then something was not right and her immune system was working hard to attack the vaccine. My husband figured out the dosing as I sat on the phone with St. Peter's Children's Hospital. They told me continue the medicine for the next four days and get a referral to an allergist. I did. Weeks later, I packed up my two youngest with snacks in tow and headed to the allergist. I never had a care about food allergies or any allergies in my children and perhaps that was just luck but it seemed my luck had run out. Though we ran batteries of tests and bloodwork, nothing was identified and I left with an epipen in hand hoping that if she had another reaction it would not be more serious and if it was I could help to save her if she was in distress.

Though I was shaken up, we went about life as usual and I was hopeful that reaction was the only issue our little princess would face, however in the coming months I would begin to observe behavior that I thought was unusual. Seraphina, who had initially called herself "Nina" no longer responded to her name. Period. She would play for hours by herself and not need any interaction. Though I was a busy mom of 5 and I liked that she could stay busy, something began to nag at me. As she turned 2, her tantrums increased and while I wanted to associate it with the age, something said they were not normal tantrums. Increasingly I would watch other children her age and notice she was not picking up on things as they were. I saw her as more of a "baby" and though she was interested in babies, she had no interest in peers. I began to suspect. I asked a Physician at an appointment and he looked at me, noted she was number 5 and told me not to worry. I couldn't stop worrying. My days were filled with worry and her constant screaming had me at my wits end. I was trying to make everything work and fit into a beautiful little box but I couldn't smash my emotions in there along with all the work I had with the kids, house and her behaviors, I knew she was different.

This winter I began to ask around for advice. Many friends looked at me hopeful that my own idea of what was wrong with Seraphina was incorrect and some tried to question helping me feel better about the skills she did have. I even asked my mom who was well versed in early childhood and finally during Spring break she told me to give the doctor a call again. It took me weeks to get an appointment as I was first told "pediatricians don't see kids for that". As we waited I wrote. With pages of notes, numbers of videos and five kids in tow we headed to see the nurse practitioner I love. She looked and listened and understood. She was warm and caring and agreed we had to rule out ASD. I knew in my heart ruling it out would not be the outcome and so I started saying it out loud. First, I told family. Seraphina may be autistic. Some listened, some believed and some denied it, not out of anything but pain for what our family may have to endure. I then told friends who all had a number of reactions. Shock. Confusion. Some even questioned my thoughts insisting she was "just fine". With some help from a few friends and a couple of personal calls, Seraphina was seen and formally diagnosed with Autism in June. During that wait, I had Early On brought in and they began to set a plan in place for therapies and services.

While taking care of all of Seraphina's needs, I focused on being hyper vigilant for the other four kids. I was bound and determined to make sure they didn't miss a beat. I was certain if I poured myself into them they would not even feel the effects of ASD but as I am learning, ASD isn't a child's diagnosis, its a journey. Its a life that one must accept and for me, acceptance has been hard.

As the days rolled into summer I ran myself until this past week when I realized that I needed to stop being their Super Hero and I needed to start teaching them that this is life. Life has disappointments. There are curves around the bend in which one has to change paths or choose to journey a different direction. I am certain that none of us would choose to have a child who is autistic but I will say I have learned so much already...like how to relish in the moment she says "I love you" or how to stop and listen when she asks you to read her a "gook".

We are blessed. As the spectrum goes, Seraphina is High Functioning and she will begin school this year to give her the best hope for a fairly normal life. Even though I consider myself blessed or even lucky, there is still part of me mourning. I am mourning the child I anticipated. I am mourning the relationships I thought I would witness between my children and I am mourning the changed relationships we all will have because of her diagnosis. I am also choosing to take time for me again. I need to because when I am in a better spot, I am a better mom.

I thought by now all the sadness, anger, anxiety and fears would have subsided but truth be told I think I am just beginning this wild ride. No matter what ups and downs we hit I know that God is with me and lifting me up when I can't go on.


Comments

  1. I know you mourn what you thought would be but I think you could celebrate what has come to be. Your other four are more sensitive and compassionate. They love Seraphina, too, and it shows in their interactions.
    Children tend to think of themselves as centers of the universe and we do see that in your kids, especially the younger ones, but we also see awareness of others in their actions and reactions. You are teaching them, not only through your words but through your own actions and expectations. Everything you say and do has an impact. When you are positive, they are positive. When you are discouraged and sad, they reflect that back. Your kids are amazingly wonderful people and your and Colin's efforts and outlooks are evident in their attitude.
    Seraphina has already made noticeable progress. She is very smart like your others and with all of you in her corner, she will be a successful and loving child of God. She ialready s loving and happy and secure, like the rest of you! I love you all so very much!

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