Parenting in the trenches
Parenting a child with special needs is both a joyous blessing and a at times a heartbreaking task. Yes, all parents experience these highs and lows but for some the highs and lows hit just a little harder.
What do I mean? Let’s go back to the birth (assuming your child’s diagnosis didn’t come until after their birth), while the other new moms were rejoicing over their precious bundles (and receiving congratulations as well), the mom of a child with special needs often hears, “Oh, I’m so sorry.” The air around them often develops almost a funeral like atmosphere. The hospital staff is often more subdued than anything. People tend to tip-toe around the new mom (and dad) not quite sure what to say. As a mom of a child with specials needs, let me say, that congratulations on the birth of a new child is always in order (and so much more appropriate than the “Oh, I’m so sorry” comments).
Let’s assume you’ve gotten through those first few months and are trying to just enjoy being a mom to your newborn. Unlike the other moms whose children didn’t come with a “diagnosis of doom and gloom,” (yep, so much of the information parents of children with special needs receive is of the “doom and gloom” variety), you’re busy trekking off to the multitude of doctors appointments your newborn has scheduled. This makes it difficult (but not impossible) to see the child for the diagnosis. After all, if your days consists of getting to one doctor’s appointment after another when do you get to just sit and admire that new bundle of joy?
After a short time, you may start getting assistance from the Birth to Three (or Intervention Program by another name) where well-meaning professionals come to help you with your child. The questions they ask just serve to remind you that your precious baby isn’t quite like the other babies out there and needs more help. The focus is often on what the child can’t do and what they can do to help you help your child get to where they need to be (which may or may not happen).
At this point, you have probably come to see your precious bundle as yours and that he/she is unique in his/her own way and you love that little bundle and wouldn’t trade for another. You start living and only occasionally think about the diagnosis — like when something goes wrong or when your girlfriend whose baby is the same age as yours reaches a milestone that your precious little bundle hasn’t reached and isn’t showing any signs of reaching in the next few weeks.
Gradually, the years past and you are now a mother (parent) of a pre-schooler but your precious pre-schooler isn’t walking or potty-trained or fill-in-the-blank, well you get the picture. The funny thing is by this time you’re more of a veteran mom of a child with special needs so you don’t focus so much on what junior can’t do but on what he can do. Then when you are just tickled pink because Junior took two steps without holding on to anything, your girlfriend mentions that her little one has started riding his trike all over the yard. Yes, you’re happy for her but for a second that little voice in your head says, “What about Junior? Why does she always rub this stuff in my face.” Word to the wise, she isn’t intentionally rubbing it in your face, she just forgets that Junior isn’t as developmentally advance as her little one is and she is excited about her child’s progress.
What’s interesting is as the years progress, at least in my experience, the diagnosis becomes less important in the grand scheme of things and most of the time you tend to forget about it until something slams reality back down on your head. It’s those times that the heartbreak can be excruciating. It’s those times you wonder how you made it this far and you forget all that you and your precious bundle have accomplished. For those of you just starting out, I would highly recommend that you take the time to document your child’s successes. That way when reality strikes (and we all know it will) you can pull out your memory book(s) and say, “this too shall pass and when we reach the other side we will be victorious once again.”
Another bit of advice, if you know your child has a low immune system don’t be afraid to tell sick people to stay away. Your child’s health is more important than that play-date.
My son with special needs is now 17 and our life hasn’t always gone the way I hoped and prayed it would, but I know it has proceeded in a way that it needed to proceed to fulfill God’s plan for the two of us. To be honest, all three of my boys had a rocky start in life. Mitchell spent 3.5 weeks in the NICU after being life-flighted to get there. Zachary turned blue in the newborn nursery (yes, antiquated practices of a newborn nursery at the hospital) and came home with an apnea monitor which I do believe weighed more than he did and we lugged that thing around for 6 months. So I know that even a child with the right amount of chromosomes sometimes becomes a special needs child if only for a little while.
My days that reality slaps me in the face have ebbed and flowed over the years. Right now, I feel like I’m in the midst of one big reality wake-up call as my hopes and dreams for Nick aren’t exactly lining up with reality. It’s hard too when the 9 year old seems more mature (at times) than the 17 year old. (The 11 year old some days seems older than me.)
Hopefully, this post hasn’t made some expectant mom panic (especially if she has already gotten a doom and gloom prenatal diagnosis) because truthfully the good has outweighed the bad and I’m confident it will continue to do so.