Warning: I have been trying to allow myself to open up enough, and be honest enough with my own feelings to write this post. I have typed and deleted many times, and have started and worked on this document for a couple of weeks. I hope it does not ‘step on any toes’ so-to-speak. I just needed an outlet to speak my mind and share some feelings. Thank you for listening and letting me vent a little. Most importantly, thank you for the prayers. Please keep them coming.
Here we go……
Quiet Moments do not happen around here much any more. I enjoy the noise…giggles, cries, musical toys, Baby Einstein etc. The noise reminds me that Emma is here - - -my precious little girl who wasn’t supposed to live is VERY MUCH alive and learning so many new and exciting, yet sometimes frustrating and painful things.
In the quiet moments when I get a chance to sit down and reflect upon the last (almost) 19 months, I can’t believe what we have been through as a family. Being a parent of a child with a congenital heart defect, no matter what the defect, is difficult, life altering, and emotional. However, if I am being honest with myself and those around me, I am jealous. Yes, I said it, jealous or envious. Don’t get me wrong, I am so blessed to have Emma and be able to enjoy her and her accomplishments.
Are you waiting for the but………..
Here it is……
A list of things I have not gotten used to yet….
1. People telling me that I was chosen to be Emma’s mom because I am strong enough……
a. First of all, thank you for thinking that I am strong enough, but it is all a choice. Scott and I choose to fight for Emma, get her what she needs, and love her unconditionally. It is not easy. There are days that I throw myself to the floor and scream/cry because I feel alone, stressed, and scared. God is giving me the strength to get through this valley, and for that I am thankful.
2. Watching Emma struggle and stress over learning new things and gaining strength both physically and emotionally.
a. Emma sees a physical therapist, occupational therapist, and speech therapist each twice a week for a total of 6 therapies. We LOVE our therapists. They are so patient with Emma and genuinely want what is best for her. They have really helped me learn how to appropriately work with her in order to help her grow and develop as much as she can, but Emma does not enjoy therapy. Therapy (most of the time) is stressful for her, and even when she does not have ‘scheduled’ therapy she has to do mommy therapy. There are days when I struggle between finding the balance between fun time and work time. She is so far behind that we have a lot of homework to do, but I do not want her to hate any and all activities.
3. Seeing other families being “normal” and going through “normal” developmental stages.
a. This is where the ‘green-eyed’ monster rears it ugly head the most. There are only so many times you can explain why your 19 month old can’t walk, talk, eat, crawl, etc. before you start getting a little perturbed. I know people mean well, but it doesn’t make it easier. Even among the heart community Emma is a rarity. There are just not that many people who we can relate to as far as length of hospital stay and severity of complications that kept us there. So while most people I know who have children around Emma’s age are talking about potty training, learning new words, speaking in sentences, being more independent, going on first trips to the park, zoo, lake, movies, restaurants, etc, and dealing with shots, snotty noses, ear infections, and fevers----we are isolating our child, taking her to every other day x-rays and blood draws, trying to work with terrible sensory issues so she doesn’t pull out all of her hair (everything is scary to her including: wagon rides, swinging, new people, weird textures, stroller moving too fast, anything food related, and I could go on and on), and all of her doctor appointments and therapies.
I crave normal sometimes. I am fully aware that this is our new NORMAL. I accept that—embrace it even, but that does not mean that I don’t miss the little things like attending worship as a family, or going to Walmart anytime for something I need at home, going to family events, etc.
I am working at becoming more at peace with this aspect of our lives, but I am a work in progress so to speak. Please know that I do care about the wonderful things that your child is learning how to do, but that it does strike a nerve inside of me and reminds me that this terrible life altering birth defect CHD has stolen some of those moments from us (at this current time).
I am a mother of a special needs child! I am proud of this title, but at the same time struggle.
4. People telling me they know how I feel….
a. REALLY??? I even ‘chastise’ my husband for saying this from time to time. There are VERY few people who truly know how I feel. I don’t mean to seem negative, and I am sure people are only trying to be helpful, but……it really isn’t. I love living close to Emma’s doctors, but it is lonely . . . I spend hours on the phone with insurance companies and doctors offices. . . I answer five million questions from all of the medical personnel….and ultimately I try be Emma’s biggest advocate while trying to live my life as well.
Thank you for letting me vent a little. I want you to leave this post remembering that I LOVE my child dearly. I also want you to take a moment and say a prayer of thanks for the healthy children in your life and offer up a prayer of strength for those you know and even those you don’t know who are fighting for their children every day.
Always remember that GOD IS GOOD! He is---He really is! All the Time! Even in the hard times, the quiet moments, when life seems unfair!