Before I entered the world of special needs, I never would have imagined this day...the day that I envy children with Down syndrome.
Today as we sat with our playgroup at Max's special school, tears began to well up as I noticed the widening gap between Max and his friends. Many in our group have Down syndrome and their progression has been amazing. Learning and using sign language very effectively, talking, walking, communicating, eating, playing...truly wonderful progress.
While I am thrilled for them and their families, it also saddens me to realize that their abilities are much more advanced than Max's. Yes, Max is doing wonderful too but he is moving at a different speed than his friends. To give him credit, he is a few months younger and spent more time in the hospital. BUT regardless, it hurts...it hurts terribly. And it angers me at myself. Am I doing enough? Maybe it's my parenting skills? Maybe it's because there is only one parent and I am not able to give him enough? Maybe I should do more research or focus more on particular areas? Maybe this, maybe that...the list goes on and on.
Here I am in a circle of special needs families...the one place we feel "normal." Yet I am holding back a flood of tears because of the stark realization that my child is behind everyone else. I wanted to just pick up Max and and run far, far away. But we stayed and I attempted to make the best of it.
What an incredibly difficult morning. I am overwhelmed with emotions, concerns, fears and questions. What next? What is going to happen when he goes to school? How can I better prepare for him? What else should I be doing? How can I get over the sadness? Who, what, where, when, why...the questions are endless.
20 comments:
Hugs Amy. I don't that I could say anything that would magically take all the pain away, or be the exact words that you needed to hear. But know that I am praying hard for you and for Kristy. Know that I promise to continue to pray for you girls and your children. Know that I love you and have two strong shoulders and two big ears to be here for you.
Hugs to you and Maxwell. I love you both
I can not imagine a parent doing more than you have for Max! You are one of the most extraordinary people I've ever met. Please don't get discouraged, Max is amazing because of all of your hard work and love.
Ugh, Amy I feel a giant knot in my stomach when I read this post. This is exactly what we go through all the time. You just can't help comparing your child to others. At Tom's school, he wasn't selected to be part of a new "reverse inclusion" program they have where they are pairing children with autism up with "typical" children of the same age in "typical" preschool classes that are being taught right in Tom's special needs preschool. But other children in his class were selected, and it's very frustrating. It's frustrating most of all to know that if you only had more help, more time, more energy, more money (mostly more money), you could do more. And I am so disgusted that the supports don't exist for these children - that it's a struggle to make sure they can reach their full potential, whatever that potential may be. And unfortunately, you as the parent know better than anyone what that potential may be, yet because you're the parent and not the "expert" your ideas/opinions/feelings are often dismissed as subjective and questionable. So I completely empathize with this. However, you have to realize that honestly, relative to other parents with children who have special needs, you are clearly among the very top one tenth of one percent of extraordinary moms. I have seen it all, and I would have to say that you are probably a case study on what an "optimal" parent would/should do for their child. Even my own wife, who is amazing, reads up on what you're doing and says, "Am I doing enough?" So - know that you're not alone in this feeling. And, as impossible as it is, just try your best not to compare your child to others. He is truly unique and will progress in his own way at his own pace. Frankly, I'm amazed at his progress!
Hi Amy,
It's really hard to not compare kiddos. I do the exact same thing even with my best intentions not to. I'm so sorry you are in that place and you are such a wonderful friend. Like your phone message said to me...I'm there for ya.
I also ditto what Stefanie has said. You are one of the most amazing parents I've ever met and set such an example for me. I admire you and all that you do. As Mike stated..."You are among the very top one tenth of one percent of extraordinary moms." It was well stated and I agree.
Hang in there. Before you know it, Max will give you one of those moments that makes life all better again. Dylan and Jonah do that for me all the time. And if you want to talk...absolutely.
Love ya.
Amy, I think at some point we all feel we need to do more but we can't do everything. As you know I am always wondering what else I can do to help Eva do more. I look at Max and I am so jealous, yes you are one parents and Eva has 2 and she is no where near Max. Max is walking with his walker, Eva doesnt even know what it is for. Max is signing, Eva has about 2 sign she can do and she only does them when she wants to. You are a wonderful mom and Max is the luckiest child in the world to have you has his mom. There are day I want to bring Eva to you and show me your tricks with Max so I know what I am doing wrong. I cry a lot but I also just heard crying is good it releses so much stress off our shoulders.
I know as Thanksgiving arrives we are so thankful for our children and we are so lucky to have eachother (and all our CHARGE families) even if we are spread aross the country.
You are going great Amy and I am sending you the worlds greatest hug!!!
Hugs,
Crystal and Eva
Amy you are one of the best mom's I know. I once heard a wise saying: God never gives us something HE can't handle! I know I can say that to you and it won't land on hollow ears. Not that I'm an expert but I think what you are feeling is normal and I think crying or blogging or whatever you need to do is good. But I'm sure more comments will flood in, encouraging you and affirming you as a wonderful mom and that Max is exactly where he needs to be.
Amy, I wish I were there to give you a hug! Try to concentrate on just one day at a time.
Just today I went through Maxwell's pictures you have posted and shared them with George. He is always so amazed at how far Maxwell has come and all that you do without any help.
I read of other excellent mothers who have children with fathers and how difficult it is for them. I then think about you and how you have never had any help with Maxwell. Amy, the only way that you could do more is if there were more hours in a day.
Look into Maxwell's beautiful big brown eyes and can see all the love that he shows when he looks at you. Then swallow those tears and give Maxwell and big kiss.
Holidays are wonderful but they are also a time when we are inclined to think of what we don't have. I know that after my parents died, there were many times that I wished that I could go to sleep the week before Thanksgiving and awaken on New Years Day.
I am always here if you want to talk.
Love,
Mary
Amy, I'm so sorry you are feeling blue. Max *will* achieve great things - but on his own time. I think I've shared that my son was a 28 week preemie. I was involved in a play group when he was small that consisted of all "typical" full term children - all of whom were way ahead of him in many ways. Now, my son doesn't have the same challenges as Max so I can honestly only say I have an inkling of your pain, but I have felt similar feelings.
You are truly an amazing and inspiring person and I love reading about Max's progress.
i no wat u mean i got charge but some of my say cp friends or other firends while we r all same we r yet so different none of them have the feeding probs i have but then all their fams get it well my best fam does her mums great and she knows i can eat certain things so wat does she do when they r having that she will offer it to me how good is that lol
Amy,
There isn't anything I can say to take away the hurt in this truth--I see it in Evan also, nearly every day. And it's OK to be sad about it. All we can do is try to remember that CHARGE isn't Down's, it isn't Autism, and even two kids with CHARGE syndrome can be entirely different. Max can only be compared to Max--and I have to say that compared to him a year ago or even six months ago, he is kicking the pants off himself!
Hugs,
Sarah, Jeremy, and Evan
Amy- I wish I had read this before I saw you tonight. You are so amazing and so is Max. Please remember this even when you are having a rough day you are one of the most amazing people I have ever known. I know my kiddos don't have the same challenges as Max does but I wanted to let you know that you are not alone in having these feeling many times I have left places in tears because my kiddos just did not compare to the typical kids that all my friends have. I hope you have a relaxing night tonight and get to watch your show. I am thinking of you and Max.
Amy-
I can just repeat what others have said, because it's the honest to God truth...you one of the most amazing parents...okay, the 3rd most amazing parent (what can i say? I was spoiled with bill and dee) ever! i'm sorry i don't have the words to take the pain away. just know that i'm here and i love you and max so much...maybe not as much as max loves himself...but pretty dang close! =)
Amy, I know exactly how you're feeling. We had been told when I was pregnant with Katie that she might have Down's due to things they saw on the ultrasounds, and I can honestly say that sometimes I think to myself, "Wow, Down's may have been a blessing compared to CHARGE." Not that Down's families don't have their own share of challenges and ups and downs, but CHARGE affects SOOOO much--it has to be one of the most complex syndromes I've ever seen. And even within our own CHARGE "family," I admit that I sometimes feel jealous or down because of the kids who have some hearing, or good language skills, or are cognitively high functioning--I think how much easier comparatively that those things make their lives. And although Katie is making great progress at school, it's always very difficult for me to go in and observe and watch all the other typical kids in her classroom talking, playing, interacting--just being kids. It's usually all I can do to hold back the tears until I leave.
I guess what I'm saying is what you're feeling is typical. And while we know our kids are making great progress in their own time, it's hard not to compare and to want so much more for them. Just know that you are doing all you can for Max, and if he is happy and loved, he has more than many children in our world do. You're a great mother--don't forget that!!
Hugs,
Leslie & Katie
I think so many of us, as you can see here with the comments, are truly inspired by Max. I look up to him as the benchmark for a 2 year old and to Keith as the benchmark for an 18 yr old going to university and Lucas as the benchmark for 6 months, same as Reu. As Crystal says, we compare our little loves to other CHARGE kids especially as Reu has the lion's share of medical intervention. This is exactly how I'm feeling right now and I feel truly ashamed of the disappointments I feel at times. I wish I could offer some words of encouragement, but I'm right there in the depths of feeling Why, why, why and how? but I'd like to call and have a chat again soon when I'm feeling less self centred. As everyone says here, you are truly inspiring.
Amy,
Hang in there girl! Let yourself have a good cry, in private if you can, and let it all out. In the long run it will make you feel better! Use some cucumber slices on your swollen eyes and if anyone asks what's wrong just tell them you have allergies.
Whenever I look at Jordan and ask "why" God seems to put someone in my path that makes me realize that "it could be worse". We are strong, resilient moms who do the very best we can for our kids every day. Some days our very best is better than others but by virtue of the fact that every day we get up and face the day we are amazing!
You are not alone, as many of your friends here have indicated. I had one of those days yesterday as I try to make a medical decision for Jordan that is of a magnitude that can not be measured with current technology!
Hugs to you
Shari
Amy, As Mothers we all have the tendancy to beat up on ourselves and play the woulda, coulda, shoulda game. If I have learned anything in this life it is to fight for your child, be proud of their accomplishments and do not do not comapre them to others. We are all unique in God's eye and we all serve a prupose which we may not realize or know until we reach another life. But, please please be kind to yourself. Just from reading your blog I have learned so much and I KNOW that you are an amazing Mother. Look into Max's eyes and you will see unqualified love in his eyes and in your reflection. God Belss you and Maxwell.
I'm sure it is very hard some days, but what you can't forget is how far Max has come from those first days in the hospital, and that is all YOU and God. No one could be a better mommy or do more for Max than you. Max is incredible. You are incredible.
Lara in WV
My gosh, Amy. I have 3 children and none have any sort of "special need." Yet, I get so frustrated with them many times. Then I read your blog and I TRY TO BE MORE LIKE YOU. You are so patient with Max which is exactly what he needs. He will learn in his own time and you and him are a perfect team because you do have the patience that it takes to let him learn at his own pace. Just keep being so proud of him. He has accomplished so much in the short time that I have been following his blog and he could not have done any of it without your patience and persistence. Furthermore, he is much better off in a happy one-parent home than in an unhappy two-parent home. God bless you richly for being so great to His little Maxwell. And thank you for being such a good role model for all mothers. Chin up sweetheart, you (and Max) are doing just fine!
Lindsay Godsey
Memphis, TN
Amy
It is far better to have one truley brilliant parent than two average ones.
you put your heart and sole into Max...there is only so much we can do with our children with this syndrome.
It is natural to always worry about the future...your not alone in that one.. thats what makes us great parents.
(((hugs))))
Les and Amélie xx
Amy, like I have said from the beginning when I first met you and Max. You are an INCREDIBLE MOMMY. Max would not be as far as he is today, if it weren't for your never ending love and devotion for him. I love you both.
Love and Prayers,
Carolyn in WV
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