Over the last year plus, we have been on a long medical journey with our youngest son. After many concerns brought to doctors, referrals, phone calls, questions, waiting, appointments, tests, trials, and more waiting, he was recently diagnosed with a myriad of fairly severe food allergies. This is on top of other environmental allergies that we have known about for about a year.
I know that compared to other people, food allergies are nothing. I will probably one day feel less bothered by them, but due to the severity and the adjustments we are learning to make, it has been a huge change in our lives.
His reactions cause hives and rashes on his chest, legs, face, and some are even considered anaphylactic. There was a time in the not so distant past that he would have hives every day. That was the norm. He would have bright red rashes all over his face every day. He has other symptoms that feel so normal to us because they have been HIS normal for so long.
I’m so thankful that we are finally getting answers. I have to be completely transparent though….I’m also mad.
I’m mad because I’ve been raising alarms about potential allergies nearly his entire life. When he was a small baby, he had one particular symptom that I spoke to THREE different doctors about. I was consistently told that it would go away. When it did not go away, I was told that our focus should be somewhere else and it would clear up “eventually” or a number of other excuses. I was consistently and constantly brushed aside. It is so hard to feel like the reason I was brushed aside so frequently was because I wasn’t his mom.
I was just his foster mom. (I reallllllly hate that word)
This week, I raised a question about a specific symptom my son experiences and has experienced almost every day since we met him at five days old. The alarm bells went off loudly somewhere and two of his doctors from different organizations actually collaborated in my son’s best interest and decided to refer him to a specialist. When the nurse called to tell me, I am sure she could sense my frustration/relief/annoyance.
I explained to her that I feel so sad for my son because all of these negative symptoms that make him different from others and cause him problems are things I’ve been concerned about his entire life, not just the last 18 months. I feel like he wouldn’t be going through these things at almost 4 years old when they have been issues since he was an infant. The nurse told me that they actually looked in his chart and according to their records, the first time I raised concern about some of his symptoms was when my son was only a month old.
It makes me sad to think that because I was only his foster mom and his life was dictated by “the system” that I was not heard. I was not validated. My concerns ultimately just ended up in a file somewhere.
Sorry for the pity party. I really did not intend for this to end up this way. These are the raw and real emotions of an adoptive parent that just wants the best for my son.
With all that being said, I am so thankful we are finally on the right path. Or at least on a path in general. We have more waiting and appointments in front of us, but we do have some answers. It is so unfortunate that he had to have my last name for me to be heard, but he has it for life. So, I won’t ever be muted again. I finally have a voice and when it comes to my children, I will never lose it again.
Yes, I am “that mom.”
Koko