4 November 2013
On Thursday night after your feeding, you jumped :) into bed with mommy for some snuggles. As you were looking at me, your eyes started to twitch and move from side to side and your bottom lip was also twitching, almost like there was a string attached to your lip and somebody was pulling on it....so bizarre.
After you did this half a dozen times, mommy got into a bit of a panic and told daddy that something was wrong and we needed to do something right away. I was torn between calling 911 and Health Link. I know that there is a big difference between the two, I just didn't want to over-react. I sometimes think that I overanalyze, but I also know that as a mommy, you know when something just isn't quite right. It wasn't quite right.
Health Link advised us to take you to High River Emergency.
Not too much happened....your vitals were checked and you were monitored for a few hours.
Saturday, after a feeding, the same thing happened. Mommy called her best friend, who is a doctor, to get some advice. She told us to take you to ACH, as they will do a thorough examination and we would get some answers.
We were seen immediately and the tests started. The Respiratory Therapist came in to check your blood gasses, mommy was ok with a little heel poke. We thought that maybe that would be it for blood work. Nope. An IV was going to be started, a catheter inserted to get a urine sample and more blood needed to be drawn. Mommy had to leave the room. Daddy was a trooper.
I had to go to the end of the hall so that I couldn't hear your cries. It was breaking mommy's heart. It was so tough. I wanted to be the one getting poked and prodded. I wanted to take away your pain. Mommy returned to the room and you were very distraught. You were crying so hard. You were so upset. Mommy came over and I put my hand on your forehead, kissed you and told you how much I loved you. You stopped crying instantly and the tension from your body released. You calmed down. I cuddled you and reminded you over and over again that I loved you so much.
An EEG was preformed the following day and it came back all clear. Your blood work also showed no signs of seizure activity. There was a huge sigh of relief. Mommy and daddy were happy that the results were positive. The neurologist is going to follow and monitor your progress for the next while, just to make sure that you remain healthy and seizure free.
I am writing you this letter Adele, because sometimes mommy feels defeated. Sometimes mommy feels so helpless and useless. I worry about you Adele. I worry about your health. Mommy still questions at times, was it fair to bring you into this world, knowing that the journey would not always be easy.?? That there would be many obstacles and bumps along the way. You don't deserve it. It just isn't fair. There is no other way to put it, it just isn't fair. I wonder sometimes, was it for my own selfish reasons that I continued with the pregnancy? Mommy was far along in the pregnancy, almost halfway when daddy and I were still talking about your health and just how fair it would be to bring a child into this world who will have challenges. Mommy would always tell daddy that I couldn't go into the hospital, be induced, deliver a baby and leave with nothing. How would we leave the hospital without a car seat? How could I deliver a baby and say goodbye? How is that right?
It just makes me sad that this journey that you are on, has been difficult. You are only three months old and you have endured so much. When I look into your eyes Adele, I see strength and hope and love. I see right into your soul. I see this beautiful angel who has impacted so many lives in such a short period of time. I see that you have changed so many views and you have done this, not only in High River, but all across the world. You have brought so many special people into mommy's life and I love you for doing this, as it has made me a better person. You have made me a better person. My three month old has taught me the value of diversity. You have taught me that by having an extra chromosome, it has made you one extra special little girl. You have taught others that love is unconditional. You have encouraged others to find out more about Down syndrome and have shown so many just how resilient and beautiful you truly are....so beautiful.
Mommy gets scared sometimes about what lies ahead. Mommy fears the worst. I fear more hospital visits. I fear that you will develop cardiac issues. I fear that you won't be happy with your life. As a parent, you want your children to be happy and healthy. Bringing you into this world, mommy and daddy were well aware that sometimes it will feel like we are only taking steps back while in our minds, as parents, we should be working harder, we should only be taking steps forward. I don't want to feel defeated Adele. I don't want to feel like I have failed you. I don't want to feel that I didn't do everything possible to make sure that you were always moving in the right direction. I want you to smile. I want you to wake up knowing that you are such an amazing, perfect, loved and precious angel. I don't ever want you to look at mommy and daddy and wish for better, or to feel that we aren't doing our job.
I am your mommy Adele. I will always look after you. I will always love you. I will always be your advocate. I will always hug you when you need a hug. I will always lead you in the right direction. I will always show others that you came into this world for a reason. You were given to us for a reason. You have this diagnosis for a reason. You have changed so many lives for a reason.
It's just hard sometimes. Mommy feels drained. Mommy feels tired. Mommy told daddy the other night while I was cuddling you, I was close to my breaking point. I could see all these bandages on your arms from taking blood. I saw bruises from the needles. Your little hand was all taped up with the IV poking out. You were exhausted. You were so spent. You were sad. You wrapped your arms around mommy and you held on, truly, you held on. I held you tightly, kissing you again and again. I rubbed your back. I rubbed your head. I reassured you that it was going to be ok. I was sad. Mommy plays through her mind often that it will get better. Others have told me that it will get better. I know, but I am living this right now. I am going through it right now. I need to acknowledge the journey that we are taking at this very moment.
When mommy feels that the road is bumpy and the thought of giving up enters my mind, I always listen to the same song. It reassures me. It tells me to carry on. It tells me that it will be ok.
Carry On - By Fun
I love you Adele.
PS....please don't feel that I am in a slump or depressed. We have a great life, filled with joy, happiness and a lot of laughter. When we hit a bit of a wall, it's tough. It's therapeutic for me to write about the journey and it's important for me to share with all of you. xo