My Experience As A Special Needs Parent
My son is turning One this month. What has our first year with Rodrigo Ivan been like? Let’s recap!
Rodrigo Iván was diagnosed with Translocation Down Syndrome at 1 week old. Translocation Down Syndrome falls under Trisomy 21 criteria. Meaning, he has an extra copy of the 21st chromosome. The difference here is that the extra copy comes from chromosome 14, usually. It is an extra genetic material passed down from Mom or Dad. You can read more on Down Syndrome on my “Trisomy 21: Down Syndrome” post.
No Prenatal Diagnosis
As written on my “Grieving A Loss” post, we were not prenatally diagnosed. We did not know what we were in for to say the least. Initially, dad and I went through the process of Grief; uncertainty, denial and finally acceptance.
Uncertainty because although our “gut” told us that our son “could have” down syndrome, we did not know the results of the genetic testing yet.
Denial because deep inside what we longed for was not our reality. We longed for a baby boy, simple as that, right? Not because we did not want a child with Down Syndrome but because we did not picture a child with Down Syndrome. Any special needs parent can attest to that.
Acceptance, realizing that God blessed us with a baby boy, that came with a diagnosis of Down Syndrome. Regardless, we would love him because he was a part of my husband and I. Aside from him having DS he was our son first and foremost, and like our girls, we would take care of him as well.
Recall my initial question above. “What has our first year with Rodrigo Ivan been like?”
In one word: Hard. Since his birth we have not had a time out. In and out of hospitals, surgeries and procedures. Early intervention therapies and evaluations. Doctors appointments, specialist evaluations and scary diagnoses.
BUT.. everything that we have gone through this year has brought all of our families together. We have taken all our situations head on. We are stronger now because Rodrigo came in to our lives.
Anytime we reach a milestone as a family we celebrate. Everytime Rodrigo reaches milestones we celebrate. He will be one and he is the strongest person I know. At one he has gone through his first surgery, MRI, cardiac issues, respiratory issues, growth delays, developmental delays and guess what? He has survived it all. He is beyond blessed and we are beyond thankful for him.
Our Future With Down Syndrome
Is very bright. I am thankful to be surrounded by an amazing support system, my family! As a family we have seeked resources to help us cope for what is to come in our future. We have proven to ourselves, Rodrigo and God, that we are resilient when we stick together.
We have yet to encounter an uncomfortable or upsetting situation, but we are ready for that when it happens. While we don’t know what our future holds, we do know how to overcome obstacles.
Let’s Be Honest
I was scared, did not know what life would be like and I was hesitant about Down Syndrome.
In all honesty if Rodrigo had not come to our lives when he did, I am not sure where we would be now. As a family, our communication is better, we are stronger, more optimistic and we look forward to seeing Rodrigo grow.
A completely new world has opened up for us. We are involved in different communities because of this. Before him we did not know what other worlds/communities were out there. The Special Needs families, the Down Syndrome families , the Advocate families. Now we see our world and lives with different eyes.
I always thank God for Rodrigo but I also do not feel like I thank Him enough.
Rodrigo Ivan is truly a blessing in disguise. Our uncertainty has evolved into strength.
My experience as a Special Needs Parent has been life changing so far. An experience that is once in a lifetime and for that I am grateful!